Exocrine Pancreatic Insufficiency (EPI)

How I PRed My 100k Time

by Dana Lewis

I’ve been training for a big goal of mine: running a 100k in a specific amount of time. Yes, I’ve run farther than that before: last year I ran ~82 miles. However, I had someone in my family network who ran 100k last year, and I realized their time made a reasonable goal for me. I’m competitive, so the extra motivation of striving for a certain time is helpful for channeling my “racing”, even if I’m “racing” someone virtually (who ran a year ago!).

Like last year, I decided I would run my 100k (which is 62+ miles) as a solo or DIY ultramarathon. I originally plotted five laps of various lengths, then figured out I could slightly alter my longest route by almost a mile, making it so I would do 2 laps of the same length, a third lap of my original longest length, and then a fourth lap of a shorter length that’s also one of my preferred running routes. Only four laps would be mentally easier than doing five laps, even though it would end up being exactly the same distance. Like last year, I leveraged extensive planning (most of it done last year) to plan my electrolytes, enzymes, and fueling in advance. I had a lot less work to do this year, because I simply refreshed the list of gear and prep work from last year, shortened of course to match the length of my expected race (less than 18 hours vs ~24+ hours). The main thing I changed in terms of preparation is that while I set out a few “just in case” supplies, most of them I left in their places, figuring they’d be easy enough to find in the house by Scott (my husband) if I needed to ask him to bring out anything in particular. The few things I laid out were emergency medical supplies like inhaled insulin, inhaled glucagon, a backup pump site, etc. And my usual piles of supplies – clothes, fuel to refill my vest, etc – for each lap.

My 100k run supplies set out on the floor. I have a bag of OTC enzymes (for exocrine pancreatic insufficiency), 8-10 individually packaged snacks ranging from Fritos to yogurt pretzels to sandwich cookies, cashews, and beef sticks, a bag of electrolyte pills, and eye drops and disposable tooth brushes. Each lap (4 total) has a set of each of these.

One thing that was different for my 100k was my training. Last year, I was coming back from a broken toe and focused on rebuilding my feet. I found that I needed to stick with three runs per week. This year, I was back up to 4-5 runs per week and building up my long runs beginning in January, but in early February I felt like my left shin was getting niggle-y and I backed down to 3 runs a week. Plus, I was also more active on the weekends, including most weekends where we were cross-country skiing twice, often covering 10-15 miles between two days of skiing, so I was getting 3+ extra hours of “time on legs”, albeit differently than running. Instead of just keeping one longer run, a medium run, and two shorter runs (my original plan), I shifted to one long run, one medium long run (originally 8 and then jumping to 13 miles because it matched my favorite route), and the big difference was making my third run about 8 miles, too. This meant that I carried my vest and fueled for all three runs, rather than just one or two runs per week. I think the extra time training with the weight of my vest paid off, and the miles I didn’t do or the days I didn’t run didn’t seem to make a difference in regard to recovering during the weeks of training or for the big run itself. Plus, I practiced fueling every week for every run.

I also tapered differently. Once I switched to three runs a week, my shin felt a lot better. However, in addition to cross country skiing, Scott and I also have access now to an outdoor rock climbing wall (so fun!) and have been doing that. It’s a different type of workout and also helps with full body and upper body strength, while being fun and not feeling like a workout. I bring it up mostly because three weeks ago, I think I hurt the inside of my hip socket somehow by pressing off a foothold at a weird angle, and my hip started to be painful. It was mostly ok running, but I backed off my running schedule and did fewer miles for a week. The following week I was supposed to do my last longest long run – but I felt like it wouldn’t be ideal to do with my hip still feeling intermittently sore. Sometimes it felt uncomfortable running, other times it didn’t, but it didn’t feel fully back to normal. I decided to skip the last long run and stick with a week of my medium run length (I did 13, 13, and 8). That felt mostly good, and it occurred to me that two shorter weeks in a row were essentially a taper. If I didn’t feel like one more super long run (originally somewhere just under a 50k) was necessary to prepare, then I might as well consider moving my ‘race’ up. This is a big benefit of DIY’ing it, being able to adjust to injury or schedule – or the weather! The weather was also forecasted to be REALLY nice – no rain, high 50s F, and so I tentatively aimed to do a few short runs the following week with my 100k on the best weather day of the weekend. Or if the weather didn’t work out, I could push it out another week and stick with my original plan.

My taper continued to evolve, with me running 4 easy miles on Monday (without my vest) to see how my hip felt. Mostly better, but it still occasionally niggled when walking or running, which made me nervous. I discussed this endlessly with Scott, who as usual thought I was overcomplicating it and that I didn’t need to run more that week before my 100k. I didn’t like the idea of running Monday, then not running again until (Friday-Sunday, whenever it ended up being), but a friend unexpectedly was in town and free on Wednesday morning, so I went for a walk outside with her and that made it easy to choose not to run! It was going to be what it was going to be, and my hip would either let me run 100k or it would let me know to make it a regular long run day and I could stop at any time.

So – my training wasn’t ideal (shifting down to 3 runs a week) and my taper was very unexpected and evolved differently than it usually does, but listening to my body avoided major injury and I woke up feeling excited and with a good weather forecast for Friday morning, so I set off at 6am for my 100k.

(Why 6am start, if I was DIYing? My goal was to finish by 11:45pm, to beat the goal time of 11:46pm, which would have been 17 hours and 46 minutes. I could start later but that would involve more hours of running at night and keeping Scott awake longer, so I traded for an hour of running before it got light and finishing around midnight for a closer to normal bedtime for us both.)

*One other major thing I did to prep was that as soon as I identified that I wanted to shift my race up a week, I went in and started scheduling my bedtimes, beginning with the night before the race. If I raced at 6 from home, I would wake up at 5 to get ready, so I wanted to be sleeping by 9pm at the latest in order to get close to a normal night of sleep. Ideally it would be closer to 8-8:30. I set my bed time and each night prior, marked the bedtime 15 minutes later, so that when I started I was trying to push my bedtime from ~11pm to 10:45 pm then the next night 10:30pm etc. It wasn’t always super precise – I’ve done a better job achieving the goal bedtimes previously, but given that I did an early morning cross country ski race on the morning of daylight saving time the week before (ouch), it went pretty ok, and I woke up at 5am on race morning feeling rested and better than I usually do on race days. 7 hours and 45 minutes of sleep is an hour to an hour and a half less than usual, but it’s a LOT better than the 4-5 hours of sleep I might have otherwise gotten without shifting my schedule.

THE START (MILES 0-17)

My ultra running experience checklist, to highlight the good and the less good as I run. This shows that I saw stars, bunnies, and a loon and a pheasant, but did not see my usual eagles, heron, or heard any ducks splashing in the river at night.I set out at 6am, It was 33 degrees (F), so I wore shorts and a short sleeve shirt, with a pair of fleece lined pants over my shorts and a long sleeve shirt, rain jacket, ear cover, and gloves on my hand. It was dry, which helped. I was the only one out on the trail in the dark, and I had a really bright waist lamp and was running on a paved trail, so I didn’t have issues seeing or running. I felt a bit chilly but within 3 minutes could tell I would be fine temperature wise. As I got on the trail, I glanced up and grinned – the stars were out! That meant I could “check” something off my experience list at the very start. (I make a list of positive and less great experiences to ‘check off’ mentally, everything from seeing the stars or seeing bunnies or other wildlife to things like blisters, chafing, or being cold or tired or having out of whack glucose levels – to help me process and “check them off” my list and move on after problem solving, rather than dwelling on them and getting myself into a negative mood). The other thing I chuckled about at the start was passing the point where, about a half mile in to my 82 miles, I had popped the bite valve off of my hydration hose and gotten water everywhere and couldn’t find the bite valve for 3 minutes. That didn’t happen this time, phew! So this run was already off to a great start, just by nothing wild like that happening within the first few minutes. I peeled off my ear cover at 0.75 miles and my gloves at a mile. My jacket then peeled off to tie around my waist by the second mile, and I was surprised when my alarm went off at 6:30am reminding me to take in my first fuel. My plan calls for fuel every 30 minutes, which is why I like starting at the top of the hour (e.g. 6:00am) so I can use the alarm function on my phone to have alarms pre-set for the clock times when I need to fuel. Morning-sunrise-during-100kAs I continued my run/walk, just like I do in all my training runs, I pulled my enzymes out of my left pocket, swallowed them, put them away, grabbed my fuel out of my right pocket (starting with chili cheese Fritos), then also entered it into my fuel tracking spreadsheet so I could keep an eye on rolling calorie and sodium consumption throughout my run. (Plus, Scott can also see it and keep an eye on it as an extra data point that I’m doing well and following all planned activities, as well as having live GPS tracking and glucose tracking capabilities). I carried on, and as the sky began to lighten, I could see frost covering the ground beside the trail – brrr! It actually felt a little bit colder as the sun rose, and I could see wafts of fog rolling along the river. I started to see more people out for early morning runs, and I checked my usual irritation at people who were likely only out for (3? 5? 10? Psh!) short morning runs while I was just beginning an all day slog.

PheasantI was running well and a little ahead of my expected pace, closer to my usual long run/walk paces (which have been around 14:30-14:50 min/mi lately). I was concerned it was too fast and I would burn out as so many people do, but I did have wiggle room in my paces and had planned for an eventual slow down regardless. I made it to the first turnaround, used the trail bathroom there, and continued on, noting that even with the bathroom stop factored in, I was still on or ahead of schedule. I texted Scott to let him know to check my paces earlier than he might otherwise, and also stopped in my tracks to take a picture of a quail-like bird (which Scott thinks was a pheasant) that I’d never seen before. Lap 1 continued well, and I was feeling good and maintaining an overall sub-15 pace while I had been planning for a 15:10/ish average pace, so although Scott told me he didn’t need me to warn him about being particular miles away for aid station stops, I saw he was still at home by the time I was less than a mile out, and texted him. He was finishing a work call and had to rush to finish packing and come meet me. It wouldn’t have been a big deal if he had “missed” me at the expected turnaround spot, because there’s other benches and places where we could have met after that, but I think he was still stressed out (sorry!) about it, although I wasn’t. However, he biked up to me right at the turnaround spot, grabbed my vest and headed back to our normal table for refueling, while I used the bathroom and then headed out to meet him.

The other thing that might have stressed him out a little – and did stress me out a little bit – was my glucose levels. They were running normal levels for me during a run, around ~150mg/dL in the first 2-3 hours of my run. This is higher than I normally like to be for non-running times but is reasonable for long runs. I usually run a bit higher at the start and then settle in around 120-130mg/dL, because the risk of having too much insulin at the start from breakfast is prone to causing lows in the first hour; therefore I let myself reduce insulin prior to the run so that the first hour or so runs higher. However, instead of coming down as usual from the start of my run, I started a steady rise from 150 to 180. That was weird, but maybe it was a physiological response to the stress? I issued a correction, but I kept rising. I crossed 200 when I should have been beginning to flatten, and it kept going. What on earth? I idly passed my hand over my abdomen to check my pump site, and couldn’t feel my pump site. It had come unclipped!!! This was super frustrating, because it means I didn’t know how much insulin was in my body or when it had come unclipped. (Noteworthy that in 20+ years of using an insulin pump, this has NEVER happened before until this month, and it has now happened twice, so I need to record the batch/lot numbers and report it – this batch of sites is easily coming unclipped with a tug on the tubing, which is clearly dangerous because you can’t feel it come unclipped and don’t know until you see rising glucose levels.) “Luckily” though, this was when I was within 30 minutes or so of being back to Scott, so I texted him and told him to grab the inhaled insulin baggie I had set out, and I would use that at the aid station to more quickly get my body back into a good state (both in terms of feeling the insulin action as well as normalizing glucose levels more quickly. For those who don’t know, injected/pump insulin takes ~45 minutes to peak activity in the body, whereas inhaled insulin is much faster in the ballpark of ~15-20 minutes peak action, so in situations like this I prefer to, when possible, use inhaled insulin to normalize how my body is feeling while also resuming/fixing the pump site for normal insulin from then on).

As planned, at every aid station stop he brought water and ice to refill my camelback, which he did while I was at the bathroom. When I came up to the table where he was, I quickly did some inhaled insulin. Then I sat down and took off my socks and shoes and inspected my feet. My right foot felt like it had been rubbing on the outside slightly, so I added a piece of kinesiology tape to the outer edge of my foot. I already had pieces on the bottom of my feet to help prevent blisters like I got during my 82, and those seemed to be working, and it was quick and easy to add a straight piece of tape, re-stick pieces of lamb’s wool next to each big toe (to prevent blisters there), put fresh socks on, and put a fresh pair of shoes on. I also changed my shirts. It was now 44 F and it was supposed to warm up to 61 F by the end of this next lap. I stood up to put my pack on again and realized I had forgotten to peel off my pants! Argh. I had to unlace my shoes again, which was the most annoying part of my stop. I peeled off the pants (still wearing my shorts under), put my shoes back on and laced them again, then put my vest back on. I removed the remaining trash from my vest pockets, pulled out the old enzyme and electrolyte baggies, and began to put the new fuel supply and enzyme and electrolyte supply in the front vest pockets. Last time for my 82, I had Scott do the refilling of my vest, but this time I just had him set out my gallon bag that contained all of these, so that I could place the snacks how I like best and also have an idea of what I had for that lap. I would need to double check that I had enzymes and electrolytes, anyway, so it ended up being easier for me to do this and I think I’ll keep doing this moving forward. Oh, and at each aid station stop we popped my (non-ultra) Apple Watch on a watch charger to top off the charge, too. I also swapped in a new mini battery to my pack to help keep my phone battery up, and then took off. All this, including the bathroom time, took about 15 minutes! I had budgeted 20 minutes for each stop, and I was pleased that this first stop was ahead of schedule in addition to my running slightly ahead of schedule, because that gave me extra buffer if I slowed down later.

A 24 hour view of my CGM graph to show my glucose levels before (overnight), during the run including marks where my pump site likely unclipped, where I reclipped it, and how my glucose was in range for the remainder of the run.
A 24 hour view of my CGM graph to show my glucose levels before (overnight), during the run including marks where my pump site likely unclipped, where I reclipped it, and how my glucose was in range for the remainder of the run.

LAP 2 (MILES 18-34)

The next lap was the same route as the first, and felt like a normal long run day. It was mid 40s and gradually warmed up to 63 F and actually felt hot for the second half! It hadn’t been 60+ degrees in Seattle since October (!) so my body wasn’t used to the “heat”. I was still feeling good physically and running well – in fact, I was running only ~10s slower than my average pace from lap 1! If I kept this up and didn’t fall off the pace much in the second lap, I would have a very nice buffer for the end of the race. I focused on this lap and only thought about these 16-17 miles. I did begin to squirt water from my camelback on to the ‘cooling’ visor I have, which evaporates and helps your head feel cooler – especially since I wasn’t used to the heat and was sweating more, that felt good. The end of the second lap, I started to feel like I was slightly under my ideal sodium levels. I’m pretty sensitive to sodium; I also drink a lot (I was carrying 3-3.5L for every 17 mile lap!); and I’m a salty sweater. Add increased heat, and even though I was right on track with my goal of about ~500mg/hour of sodium intake between my fuel and additional electrolyte pills, I felt a bit under, and so the next while I added an extra electrolyte pill to increase my sodium intake, and the feeling went away as expected.

(My glucose levels had come back down nicely within the first few miles of this lap, dipped down but as I was fueling every 30 minutes, came nicely into range and stayed 100% in range with no issues for the next ~12 hours of the run!)

This time, Scott was aware that I was ahead of expected paces and had been mapping my paces. He told me that if I stayed at that pace for the lap, I would be able to slow down to a 16 min/mi pace for lap 3 (16 miles) and down further to a 17 min/mi pace for the last (almost 13 miles) lap and still beat my goal time. That sounded good to me! He ended up biking out early to meet me so he could start charging my watch a few minutes early, and I ended up taking one of my next snacks – a warmed up frozen waffle – for my ‘last’ snack of the lap because it was time for a snack and there was no reason to wait even though it was part of the ‘next’ lap’s fuel plan. So I got to eat a warm waffle, which was nice!

Once we got almost there, Scott took my vest and biked ahead to begin the camelback process. I hit the turnaround, made another quick bathroom stop, and ran over to the table. This time, since it was 60s and I would finish my next lap while it was still above 50 degrees and light, I left my clothing layers as-is, other than a quick shirt switch to get rid of my sweaty shirt. I decided not to undo my shoes and check my feet for blisters; they felt fine and good. Because I didn’t need a shoe change or have anything going on to troubleshoot, I was in and out in 5 minutes! Hooray, that gave me another 10 minute buffer (in addition to 5 before, plus all my running ahead of schedule). I took off for lap 3, but warned Scott I would probably be slowing down.

LAP 3 (MILES 35-50)

The third lap was almost the same route, but shorter by a little less than a mile. I was originally concerned, depending on how much I had slowed down, that I would finish either right around sunset or after sunset, so that Scott might need to bring me out a long sleeve shirt and my waist lamp. However, I was ahead of schedule, so I didn’t worry about it, and again set out trying to not fall off my paces too much. I slowed down only a tiny bit on the way out, and was surprised at the turnaround point that I was now only slightly above a 15 min/mi pace! The last few miles I felt like slowing down more, but I was motivated by two thoughts: one was that I would finish this lap and essentially be at 50 miles. This meant, given my excellent pacing, that I would be “PR”ing my 50 mile pace. I’ve not run a standalone 50 miles before, just as part of my 82 mile when I wasn’t paying attention to pace at all (and ran 2-3 min/mi slower as a result), so I was focused on holding my effort level to be close to the same. Plus, after this lap, I “only” had a ~13 mile single lap left. That was my usual route, so it would be mentally easier, and it’s my last lap, so I knew I would get a mental boost from that. Psychologically, having the 50 mile mark to PR here really helped me hold my pace! I ended up only slowing down ~13s average pace compared to the ~10s deterioration between laps 1 and 2. I was pretty pleased with that, especially with hitting 50 miles then!

At this aid station stop, I was pretty cheerful even though I kept telling Scott I would be slowing down. I took ~10 minutes at this stop because I had to put my jacket back on around my waist and put my double headlamp on (which I wear around my waist) for when it got dark, plus do the normal refueling. I changed my short sleeve shirt again so I had a dry shirt, and debated but went ahead and put my fresh long sleeve shirt on and rolled up the sleeves. I figured I’d be putting it on as soon as it got dark, and I didn’t want to have to hassle with getting my vest on and off (while moving) in order to get the shirt on, especially because I’d also have to do that with my jacket later, so I went with the long sleeve shirt on and rolled up the sleeves for now. I had originally planned to put my long pants back on over my shorts, but it was still 63 degrees and the forecast was only going to get down to 45 degrees by midnight, and I seemed ahead of schedule and should finish by then. If I did get really cold, Scott could always bike out early and bring me more layers, but even 45 degrees in the dark with long sleeves, jacket, ear cover, and two pairs of gloves should be fine, so I went without the pants.

Speaking of ahead of schedule, I was! I had 5 minutes from the first aid station, 15 minutes from the second aid station, 5 minutes from this last aid station…plus another ~15 minutes ahead of what I thought my running time would have been at this point. Woohoo!

LAP 4 (MILES 51-63)

However, as soon as I walked off with my restocked vest, I immediately felt incredibly sore thighs. Ouch! My feet also started complaining suddenly. I did an extra walk interval and resumed my run/walking and my first mile out of the aid station stop was possibly my slowest mile (barring any with a bathroom stop) for the entire race, which is funny, because it was only about a 16:30 pace. But I figured it would be downhill from there and I’d be lucky to hold a sub 17 pace for these last 13 miles, especially because most of them would be in the dark and I naturally move a bit slower in the dark. Luckily, I was so far ahead that I knew that even a 17 min/mi average pace (or even slower) would be fine. However, I had joked to Scott coming into the end of lap 3 that I was tempted to just walk lap 4 (because I was finally starting to be tired) but then I’d have to eat more snacks, because I’d be out there longer. Sounds funny, but it was true – I was eating ok but occasionally I was having trouble swallowing my enzyme pills. Which is completely reasonable, I had been swallowing dozens of those (and electrolyte pills) all day and putting food down my throat for ~12+ hours consistently. It wasn’t the action of swallowing that was a problem, but I seemed to be occasionally mistiming how I would get the pills washed to the back of my mouth at the top of my throat to be able to swallow them down. Once or twice I had to take in some extra water, so it really wasn’t a big deal, but it was a slight concern that if I stopped being able to enzyme, I couldn’t fuel (because I have EPI) and I’d either have to tough it out without fueling (bad idea) or stop (not a fun idea). So I had that little extra motivation to try to keep run/walking!

Luckily, that first mile of the last lap was the worst. My thighs were still sore but less so and my feet stopped yelling at me and were back to normal. I resumed a reasonable run/walk pace, albeit at closer to a 15:30+ pace, which was a bigger jump from my previous lap average pace. I didn’t let it stress me out, but I was wishing I felt like fighting harder. But I didn’t, and focused on holding that effort level. I texted Scott, telling him I was averaging sub-16 pace (barely) at miles 4 and 5, then asking him to check my assumption that if I didn’t completely walk it in, I could maybe be an hour ahead of schedule? He confirmed that I “only” needed 16:53 average pace for the lap to come in at 10:30pm (75 minutes ahead of goal) and that if I kept sub-16 I could come in around 10:19pm. Hmmm, that was nice to hear! I didn’t think I would keep sub-16 because it was getting dark and I was tired, ~55 miles into the run, but I was pretty sure I’d be able to be sub 17 and likely sub 16:53! I carried on, turning my light on as it got dark. I was happily distracted by checking happy experiences off my mental list, mostly seeing bunnies beside and darting across the trail in the dark!

I hit the almost-halfway mileage point of the last lap, but even though it wasn’t halfway in mileage it felt like the last big milestone – it was the last mini-hill I had to climb to cross a bridge to loop around back to finish the lap. Hooray! I texted Scott and told him I coudn’t believe that, with ~7 miles left, I would be done in <2 hours. It was starting to sink in that I’d probably beat my goal of 11:45 and not doubt that it was real, and that I’d beat it by more than a few minutes. I then couldn’t resist – and was also worried Scott wouldn’t realize how well I was moving and be prone to coming out too late – and texted him again when I was <5 miles out and then 4 miles out. But by the time I was at 3 miles, he replied to ask if I needed anything else other than the bag I had planned for him to bring to the finish. Nope, I said.

At that point, I was back on my home turf, as I think about the last 2-3 miles that I run or walk on most days of the week. And I had run these miles 3 times already (in each direction, too), but it was pretty joyful getting to the point where I know not only every half mile marker but every tenth of a mile. And when I came up under the last bridge and saw a bright light biking toward me, it was Scott! He made it out to the 1.75 mile mark and rode in with me, which was fun. I was still holding just under sub-16 pace, too. I naturally pick up the pace when he’s biking with me – even when I’ve run 60+ miles! – and I was thinking that I’d be close but a few minutes under an hour and a half of schedule. It didn’t really matter exactly, but I like even numbers, yet I didn’t feel like I had tons of energy to push hard to the end – I was pleased enough to still be moving at a reasonable speed at this point!

Finally, about a half mile out, Scott biked ahead to set up the finish for me. (Purple painter’s tape and a sign I had made!) I glanced at my watch as I rounded the last corner, about .1 mile away, and though “oh, I was so close to beating the goal by over an hour and a half, too bad I didn’t push harder a few minutes ago so I could come in by 10:16 and be an hour and a half ahead”. I ran a tiny bit more but didn’t have much speed, walked a few last steps, then ran the rest of the way so Scott could video me coming into the finish. I could see the light from his bike’s light glowing on the trail, and as I turned the corner to the finish I was almost blinded by his waist light and his head lamp. I ran through the finish tape and grinned. I did it! He stopped videoing and told me to stop my trackers. I did but told him it didn’t matter, because I was somewhere under an hour and a half. We took a still picture, then picked up my tape and got ready to head home. I had done it! I had run 100k, beat my goal time…and it turns out I DID beat it by over an hour and a half! We checked the timestamp on the video Scott took of the finish and it has me crossing at 10:16pm, so that makes it a 16 hour and 16 minute finish – woohoo!

A picture at night in the dark with me running, light at my waist, toward the purple painter tape stretched out as my finish line.

My last lap ended up being ~37 seconds average pace slower, so I had :10, :13, and :37 differences between the laps. Not too bad for that distance! I think I could’ve pushed a little harder, but I honestly didn’t feel like it psychologically, since I was already exceeding all of my goals, and I was enjoying focusing on the process meta-goals of trying to keep steady efforts and paces. Overall, my average pace was 15:36 min/mi which included ~30 min of aid station stops; and my average moving pace (excluding those 30 minutes of aid station time but did include probably another ~8-10 min of bathroom stops) was 15:17 min/mi. I’m pleased with that!

FUN STATS

A pivot table with conditional formatting showing when my sodium, calories, and carbs per hour met my hourly goal amounts.One of the things I do for all training runs but also races is input my fueling as I go, because it helps me make sure I’m actually fueling and spot any problems as they start to develop. As I mentioned, at one point I felt a tiny bit low on sodium and sure enough, I had dipped slightly below 500mg/hr in the two hottest hours of the day when I had also been sweating more and drinking more than I had been previously. Plus, it means I have cool post-run data to see how much I consumed and figure out if I want to adjust my strategy. This time, though? I wouldn’t change a thing. I nailed it! I averaged 585 mg/hour of sodium across all ~16 hours of my run. I also averaged ~264 calories/hour, which is above my ~250/hr goal. I did skip – intentionally – the very last snack at the top of the 16th hour, and it still meant that I was above goal in all my metrics. I don’t set goals for carb intake, but in case you were wondering, I ended up averaging 29.9 grams of carbs/hour (min 12, max 50, and the average snack is 15.4 carbs), but that’s totally coincidental. Overall, I consumed 3,663 calories, which was 419 carbs, 195 g of fat, and 69 grams of protein.

With EPI, as I mentioned that means I have to swallow enzyme pills with every snack, which was every 30 minutes. I swallowed 71 OTC enzyme pills (!) to match all that fuel, plus 26 electrolyte pills…meaning I swallowed 97 pills in 16 hours. You can see why I get tired of swallowing!

A graph showing the rates of sodium/hr for each 16 hours of the run (averaging above 500mg/hr); calories per hour (averaging above 250/hour), and carbs per hour.

Here’s a visual where you can see my consumption of calories, sodium, (and carbs) over the course of my race. The dip at the end is because I intentionally skipped the second snack of the hour 16 because I was almost done. Up to 15 hours (excluding the last hour), I had a slightly rolling increase in sodium/hr and a very slight decrease in calories/hr, with carbs/hr slightly increasing. Including the 16th hour (with a skipped snack intentionally), this changed the trends to slight rolling decrease in sodium/hr; the slight decrease trend in calories/hr continued; but it flattened the carbs/hr trend line to be neutral.

In contrast to my 82 mile where I had more significant fluctuations in sodium (and really felt it), I’m glad I was able to keep my sodium consumption at goal levels and also more easily respond when the conditions changed (hotter weather causing more sweat and more water intake than previous hours) so I could keep myself from getting into a hole sodium-wise. Overall, I feel like I get an A+ for executing my fueling and sodium strategy as planned. GI-wise, I get an A+++ because I had ZERO GI symptoms during and after the run! That’s really rare for any ultrarunners, let alone those of us with GI conditions (in my case, exocrine pancreatic insufficiency). Plus, despite the unclipped pump site and BG rise that resulted, I resumed back to typical running glucose levels for me and achieved 100% TIR 70-180 after that and I think likely 100% TIR for a more narrow range like 70-140, too, although I haven’t bothered to run those stats because I don’t care exactly what the numbers are. More importantly, I never went low, I never had any big drops or rises, and other than the brief 30 minutes of annoyance due to an unclipped pump site, diabetes did not factor any more into my thinking than blister management or EPI pill swallowing or sodium did – which is great!

Here’s a view of what I had leftover after my run. I had intentionally planned for an extra snack for every lap, plus I ran faster so I needed fewer overall. I also had packed extra enzymes and electrolytes for every lap, hoping I would never need to stress about running out on any individual lap – and I didn’t, so those amounts worked well.

A view of the enzymes and electrolyte baggies after my run, with a few left in each baggie as I planned for extras. I also had some snacks I didn't eat, both because I planned one extra per lap but I also ran faster than I expected, so I needed fewer overall

POST-RUN RECOVERY

As soon as I stopped running and took a picture at the finish line, we got ready to head home. My muscles froze up as soon as I stopped, just like always, so I moved like a tin person for a few steps before I loosened back up and was able to walk normally. I got home, and was able to climb into the shower (and out!) without too much hardship. I climbed into bed, hydrated, and was able to go to sleep pretty normally for about 5 hours. I woke up at 5am pretty awake, which possibly was also due to the fact that I had been sleep shifting my sleep schedule, but I also felt really stiff and used the opportunity to point and flex my ankles. I slept every 20-30 minutes off and on for another few hours before I finally got up at 8am and THEN felt really sore and stiff! My right lower shin was sore and had felt sore just a tiny bit in the last few miles of my run, so it wasn’t surprising that it was sore. My right hip, which is the one I had been watching prior to the race, was sore again. I hobbled around the house and started to loosen up, enough that I decided that I would put shoes on and try to go for a short easy walk. Usually, I can’t psychologically fathom putting shoes on my feet after an ultra, but my feet felt really decent! I had some blisters, sure, but I hadn’t even noticed them running and they didn’t hurt to walk on. My hip and ankle were more noticeable. I didn’t try to take the stairs and used the elevator, then began hobbling down the sidewalk. Ouch. My hip was hurting so much that I stopped at the first bench and laid down on it to stretch my hip out. Then I walked .3 miles to the next bench and again stretched my hip. A little better, so we went out a bit farther with the plan to turn around, but my hip finally loosened up after a half mile where I could mostly walk normally! Hooray. In total, I managed 1.5 miles or so of a walk, which is pretty big for me the day after an ultra run.

Meaningfully, overnight, I still had 100% time in range (ideal glucose levels). I did not have to do any extra work, thanks to OpenAPS and autosensitivity which adjusts automatically to any increases and later return to normal insulin sensitivity from so much activity!

A 12 hour view of glucose levels after my 100k. This was 100% TIR between 70-180 and probably a tighter range, although I did not bother to calculate what the tighter range is.

The next night, I slept even better, and didn’t notice any in-bed stiffness, although again on the second morning I felt stiff getting out of bed, but was able to do my full 5k+ walk route with my hip loosening up completely by a mile so that I didn’t even think about it!

On day 3, I feel 90% back to normal physically. I’m mostly fatigued,which Scott keeps reminding me is “as one should be” after runnning 100k! The nice change is that with previous ultras or long runs, I’ve felt brain fog for days or sometimes weeks – likely due to not fueling enough. But with my A+ fueling, my brain feels great – and good enough that it’s annoyed with my body still being a little bit tired. Interestingly, my body is both tired but also itching for more activity and new adventures. My friend compared it to “sea legs” where the brain has learned that the body should always be in motion, which is a decent analogy.

WHAT I HAVE LEARNED

I wouldn’t change anything in terms of my race pacing, execution, aid station stops, fueling, etc. for this run.

What I want to make sure I do next time includes continuing to adapt my training to listen to my body, rather than sticking to my pre-decided plan of how much to run. I feel like I can do that both because I now have 3000+ miles on my body of lifetime running (that I didn’t have for my first ultra); and I now have two ultras (last year’s 82 miles post-broken toe and this year’s 100k with minor hiccups like a sore shin and a hip at different times) where I was forced to or chose to adapt training, and it turned out just as good as I would have expected. For my 100k, I think the adaptation to 3 runs per week, all with my vest, ended up working well. This is the first run where I didn’t have noticeable shoulder soreness from my pack!

Same goes for taper: I don’t think, at my speed/skill level, that exact taper strategy makes a difference, and this experience confirmed it, doing DIY ultras and being able to flex a week forward or back based on how I’m physically feeling and when the best weather will be is now my preferred strategy for sure.

—-

If you’re new to ultras and haven’t read any of my other posts, consider reading some of the following, which I’ve alluded to in my post and directly contribute to the above situation being so positive:

Feel free to leave questions if you have any, either about slow ultra running in general or any other aspects of ultra running! I’m a places-from-last kind of ultra runner, but I’m happy to share my thinking process if it helps anyone else plan their own adventures.

Ultramarathon Races Are Exclusionary

by Dana Lewis

Recently, I’ve been thinking about the feeling I have that ultrarunning races (ultramarathons) are exclusionary.

Running is theoretically very accessible: you go out and do it. No special equipment or clothes needed. Same for ultrarunning: go run a distance longer than a marathon (26.2 miles or ~42 kilometers). You don’t even have to do it in an organized “race”, as many of us run DIY or solo ultramarathons for training or in lieu of races (like I did for my 82 miler). Run 26.3 miles? Technically you’re an ultrarunner (although it’s more common for a 50k/31 mile race to be the first distance most people consider ‘ultra’).

For many people, though, an organized ‘race’ or event is important for a number of reasons. It provides a commitment device and a firm and hard deadline for which to train. It might be the only safe way to achieve a distance, with aid stations and volunteers to support achieving the endeavor, if they don’t have family or friends able to crew runs otherwise or lack safe places to run these distances. It also provides motivation and camaraderie of setting out to achieve the same goal as a group of other people at the same time. And of course, it provides competition – not only with one’s self to achieve their best that day, but also against other people.

Most of us, though, statistically aren’t racing in an ultramarathon for a podium place or top-whatever finish.

So why do the rules work to exclude so many people from participating in ultramarathons?

I’m talking about rules like those often found listed in the 200 mile ultramarathon race descriptions and rule handbooks that say that aid cannot be administered outside of the aid station. Crew may not hand anything to racers outside of the aid station:

  • Cowboy 200, runner manual last updated 8/16/22: “Crew is only allowed to assist runners at FULL/MANNED aid stations. No exceptions. Crew cannot give anything to or take anything from runners anywhere except at manned aid stations.”
  • Bigfoot 200, 2022 runner manual: “Pacers are not allowed to mule (carry items) for their runner. Pacers may not give their runner any aid, food or water unless it is an emergency situation, in which case the runner may be disqualified. Pacers are for safety, not for giving aid or gaining an advantage over fellow participants.” and “Crew may not meet their runner between aid”
  • Tahoe 200, 2022 runner manual: A full disqualification may be given if “Contacts crew anywhere between aid stations; Has crew leave items left for the runner anywhere along the course; Takes outside aid between aid stations”
  • Moab 240, 2022 runner manual – same as above Tahoe 2022
  • Cocodona 250, accessed January 2023: “Crew may not meet their runner at any point on the course other than designated crew access aid stations. Runners will be automatically disqualified for receiving aid from crew outside of crew access aid stations.”

It’s a thing in 100 miles races, too.

  • Western States 100, 2023 participant guide: “Runners may not accept aid or assistance from their crew or other spectators in between crew-accessible aid stations.” and “Pacers may not carry water, food, flashlights, shoes, clothing, or other supplies for their runner or provide any other type of mechanical or physical assistance to their runner on the course.”
  • Hardrock 100, 2022 guide: “No stashing of supplies along the course and no accepting aid except within 400 yards of a designated aid station.” and “Pacers may not carry water, food, flashlights, shoes, clothing, or other supplies for their runner or provide any other type of mechanical or physical assistance to their runner on the course.”

Why is this a problem?

Well, say that an ultrarunner has type 1 diabetes and uses an insulin pump and the insulin pump breaks. (Battery dies; the pump itself smashes against a rock and breaks the screen; or like in my 82 miler last year, the water busts the button panel and it is no longer operable.) If you have a backup pump and a crew member, in a non-race setting they’d simply bike or run or drive out to you (whatever was feasible and safe for them) and hand you the pump. You’d replace it, and continue on your way.

But according to the ‘rules’ of these ultramarathon ‘races’, you’d be immediately disqualified and stopped from continuing the ultramarathon. In order to not be disqualified, you’d have to wait until you got to the aid station to swap to a backup insulin pump. Sure, you’d likely have a back up insulin delivery method (syringe or insulin pen), but those are stop gaps and not a strategy to get you to the end of the race, most likely. Knowing those rules, it incentivizes non-optimal decision making of participants to choose to continue for miles (in some cases, could be hours to the next crew-accessible aid station), all the while racking up high blood sugar and low insulin levels that can be really, really, physically unpleasant and further put ultrarunners at risk of physical injury due to the altered state of unnaturally high blood sugar levels.

My guess is these rules are there to limit cheating and a non-fair playing field for those competing for podium. (In some cases, it might be to limit traffic on narrow parts of trail, etc. so for safety reasons, but for the most part the reasons cited seem to be about ‘a fair playing field’.)

But you know what? It’s already an unfair playing field between them and people with diabetes: because those runners without diabetes have a fully functioning insulin production system inbuilt to their body! People with diabetes are already at a disadvantage. Allowing someone to switch to their backup insulin pump outside of an aid station isn’t an unfair advantage or “cheating”, nor does it even “level the playing field” with the other runners.

Instead, the ability to get medical supplies for a chronic disease outside of an aid station reduces medical and physical injury risk to the participant.

Maybe you think I’m being dramatic about the rules of these races and feeling excluded from participating. Because in fact, I do feel excluded. I know things can happen and there’s no point in paying hundreds or thousands of dollars to participate in an event where if I need to switch medical equipment mid-race and outside of an aid station, that I’ll be disqualified and receive an automatic DNF (did not finish) on my race record.

Further, there are other races with even more stringent rules that point blank exclude people with diabetes from participating at all in their races.

Yes, really.

In 2021, UTMB (one of the world’s top ultrarunning race series) announced a new medical policy (based on the Quartz Program) that forbids use of any substance on the WADA (World Anti-Doping Agency) Prohibited List that would require a TUE (therapeutic use exemption) within 7 days prior to competition or during competition.

Guess what’s on the WADA Prohibited List? Insulin.

So if you use insulin and are an athlete in another sport, you get a TUE approved and you’re allowed to participate in your sport despite using insulin for insulin-requiring diabetes.

But as a person with diabetes, you’re banned from participating in UTMB’s races! People with insulin-requiring diabetes can’t go 7 days prior to an event without insulin, nor can we go the entire race (hello, 105 miles takes a long time) without insulin. So this means we cannot participate.

This is dumb and outright exclusionary. There’s other people with healthcare conditions who are now outright banned from participating in UTMB races, too. The same exclusionary ‘health’ “program” has also been used by the Golden Trail Running Series.

This makes ultrarunning exclusionary for people with most chronic illnesses.

Think I’m being dramatic again? Check out this quote from an interview with the organizer of the health ‘program’ that UTMB used to generate this list of requirements:

“Whether the athlete is under the influence of drugs or sick, our role consists of protecting them and therefore stop them from starting the race.”

They outright say they’re trying to stop athletes from starting the race, under the guise of policing what is healthy and safe for trail and ultrarunning. It doesn’t allow for individual evaluation.

Point blank: I’m excluded, and so are many other people with chronic illnesses, despite the fact that we are likely in better health than many other prospective participants of the race, regardless of chronic illness.

Personally, I think having a chronic illness, as hard as it makes ultrarunning, makes me better prepared and a better ultrarunner: I am very experienced with listening to my body and adjusting to challenging situations and dealing with physical and medical adversity. I do ultramarathons in part because they are hard and challenging. They’re hard and challenging for everyone! That’s why so few (relatively speaking) people run ultramarathons. If it was easy, everyone would have done it.

But no one should be prevented from entering a race because of living with a chronic illness.

If you’re willing to put in the training and cover the miles and plan what you need to do in order to achieve this with your medical devices and life-critical medications? You should do so. You should not be discouraged from taking the best possible care of your body before, during, and after an ultramarathon. That is what these policies do at best: at worst they exclude you outright from entering the race.

Race directors and race organizers, your ultramarathon policies are exclusionary. You should fix them.

—

Fellow ultrarunners, I encourage you to ask race directors to update their policies, too.

How?

Take a leaf out of Tunnel Hill 100’s book. They say (bold emphasis mine):

“USATF SPECIAL NOTICE: No American, or World Record, including age group records, will be recognized for any athlete who:

1) receives aid outside of a designated Aid Station area, OR

2) uses a pacer who is not entered in the race. These rules fall under the “unfair advantage” rules.

NOTE: Don’t worry about these rules if you aren’t going to set any records other than your own personal records.“

This is how it should be done: make it clear what rules apply to elite/pro runners (aka podium/top 10/whatever places get rank or $$$) and which ones do NOT apply to the rest of us.

Don’t make people with chronic diseases pay yet another time tax to have to contact the race director and (in the US) ask for an accommodation under the Americans with Disabilities Act. Or point out, if declined, that it’s illegal to exclude people with disabilities (which includes people with most chronic diseases). We do enough work and already pay a lot of “time tax” for acquiring health supplies and managing our chronic diseases; don’t put MORE hoops in front of us to be able to participate and run.

That’s not equitable, nor fun, and it’s yet another barrier to keep more people out of running these races and events.

Functional Self-Tracking is The Only Self-Tracking I Do

by Dana Lewis

“I could never do that,” you say.

And I’ve heard it before.

Eating gluten free for the rest of your life, because you were diagnosed with celiac disease? Heard that response (I could never do that) for going on 14 years.

Inject yourself with insulin or fingerstick test your blood glucose 14 times a day? Wear an insulin pump on your body 24/7/365? Wear a CGM on your body 24/7/365?

Yeah, I’ve heard you can’t do that, either. (For 20 years and counting.) Which means I and the other people living with the situations that necessitate these behaviors are…doing this for fun?

We’re not.

More recently, I’ve heard this type of comment come up about tracking what I’m eating, and in particular, tracking what I’m eating when I’m running. I definitely don’t do that for fun.

—

I have a 20+ year strong history of hating tracking things, actually. When I was diagnosed with type 1 diabetes, I was given a physical log book and asked to write down my blood glucose numbers.

“Why?” I asked. They’re stored in the meter.

The answer was because supposedly the medical team was going to review them.

And they did.

And it was useless.

“Why were you high on February 22, 2003?”

Whether we were asking this question in March of 2003 or January of 2023 (almost 20 years later), the answer would be the same: I have no idea.

BG data, by itself, is like a single data point for a pilot. It’s useless without the contextual stream of data as well as other metrics (in the diabetes case, things like what was eaten, what activity happened, what my schedule was before this point, and all insulin dosed potentially in the last 12-24h).

So you wouldn’t be surprised to find out that I stopped tracking. I didn’t stop testing my blood glucose levels – in fact, I tested upwards of 14 times a day when I was in high school, because the real-time information was helpful. Retrospectively? Nope.

—

I didn’t start “tracking” things again (for diabetes) until late 2013, when we realized that I could get my CGM data off the device and into the laptop beside my bed, dragging the CGM data into a CSV file in Dropbox and sending it to the cloud so an app called “Pushover” would make a louder and different alarm on my phone to wake me up to overnight hypoglycemia. The only reason I added any manual “tracking” to this system was because we realized we could create an algorithm to USE the information I gave it (about what I was eating and the insulin I was taking) combined with the real-time CGM data to usefully predict glucose levels in the future. Predictions meant we could make *predictive* alarms, instead of solely having *reactive* alarms, which is what the status quo in diabetes has been for decades.

So sure, I started tracking what I was eating and dosing, but not really. I was hitting buttons to enter this information into the system because it was useful, again, in real time. I didn’t bother doing much with the data retrospectively. I did occasional do things like reflect on my changes in sensitivity after I got the norovirus, for example, but again this was mostly looking in awe at how the real-time functionality of autosensitivity, an algorithm feature we designed to adjust to real-time changes in sensitivity to insulin, dealt throughout the course of being sick.

—

At the beginning of 2020, my life changed. Not because of the pandemic (although also because of that), but because I began to have serious, very bothersome GI symptoms that dragged on throughout 2020 and 2021. I’ve written here about my experiences in eventually self-diagnosing (and confirming) that I have exocrine pancreatic insufficiency, and began taking pancreatic enzyme replacement therapy in January 2022.

What I haven’t yet done, though, is explain all my failed attempts at tracking things in 2020 and 2021. Or, not failed attempts, but where I started and stopped and why those tracking attempts weren’t useful.

Once I realized I had GI symptoms that weren’t going away, I tried writing down everything I ate. I tried writing in a list on my phone in spring of 2020. I couldn’t see any patterns. So I stopped.

A few months later, in summer of 2020, I tried again, this time using a digital spreadsheet so I could enter data from my phone or my computer. Again, after a few days, I still couldn’t see any patterns. So I stopped.

I made a third attempt to try to look at ingredients, rather than categories of food or individual food items. I came up with a short list of potential contenders, but repeated testing of consuming those ingredients didn’t do me any good. I stopped, again.

When I first went to the GI doctor in fall of 2020, one of the questions he asked was whether there was any pattern between my symptoms and what I was eating. “No,” I breathed out in a frustrated sigh. “I can’t find any patterns in what I’m eating and the symptoms.”

So we didn’t go down that rabbit hole.

At the start of 2021, though, I was sick and tired (of being sick and tired with GI symptoms for going on a year) and tried again. I decided that some of my “worst” symptoms happened after I consumed onions, so I tried removing obvious sources of onion from my diet. That evolved to onion and garlic, but I realized almost everything I ate also had onion powder or garlic powder, so I tried avoiding those. It helped, some. That then led me to research more, learn about the categorization of FODMAPs, and try a low-FODMAP diet in mid/fall 2021. That helped some.

Then I found out I actually had exocrine pancreatic insufficiency and it all made sense: what my symptoms were, why they were happening, and why the numerous previous tracking attempts were not successful.

You wouldn’t think I’d start tracking again, but I did. Although this time, finally, was different.

When I realized I had EPI, I learned that my body was no longer producing enough digestive enzymes to help my body digest fat, protein, and carbs. Because I’m a person with type 1 diabetes and have been correlating my insulin doses to my carbohydrate consumption for 20+ years, it seemed logical to me to track the amount of fat and protein in what I was eating, track my enzyme (PERT) dosing, and see if there were any correlations that indicated my doses needed to be more or less.

My spreadsheet involved recording the outcome of the previous day’s symptoms, and I had a section for entering multiple things that I ate throughout the day and the number of enzymes. I wrote a short description of my meal (“butter chicken” or “frozen pizza” or “chicken nuggets and veggies”), the estimate of fat and protein counts for the meal, and the number of enzymes I took for that meal. I had columns on the left that added up the total amount of fat and protein for the day, and the total number of enzymes.

It became very apparent to me – within two days – that the dose of the enzymes relative to the quantity of fat and protein I was eating mattered. I used this information to titrate (adjust) my enzyme dose and better match the enzymes to the amount of fat or protein I was eating. It was successful.

I kept writing down what I was eating, though.

In part, because it became a quick reference library to find the “counts” of a previous meal that I was duplicating, without having to re-do the burdensome math of adding up all the ingredients and counting them out for a typical portion size.

It also helped me see that within the first month, I was definitely improving, but not all the way – in terms of fully reducing and eliminating all of my symptoms. So I continued to use it to titrate my enzyme doses.

Then it helped me carefully work my way through re-adding food items and ingredients that I had been avoiding (like onions, apples, and pears) and proving to my brain that those were the result of enzyme insufficiency, not food intolerances. Once I had a working system for determining how to dose enzymes, it became a lot easier to see when I had slight symptoms from slightly getting my dosing wrong or majorly mis-estimating the fat and protein in what I was eating.

It provided me with a feedback loop that doesn’t really exist in EPI and GI conditions, and it was a daily, informative, real-time feedback loop.

As I reached the end of my first year of dosing with PERT, though, I was still using my spreadsheet. It surprised me, actually. Did I need to be using it? Not all the time. But the biggest reason I kept using it relates to how I often eat. I often look at an ‘entree’ for protein and then ‘build’ the rest of my meal around that, to help make sure I’m getting enough protein to fuel my ultrarunning endeavors. So I pick my entree/main thing I’m eating and put it in my spreadsheet under the fat and protein columns (=17 g of fat, =20 g of protein), for example, then decide what I’m going to eat to go with it. Say I add a bag of cheddar popcorn, so that becomes (=17+9 g of fat) and (=20+2 g of protein), and when I hit enter, those cells now tell me it’s 26 g of fat and 22 g of protein for the meal, which tells my brain (and I also tell the spreadsheet) that I’ll take 1 PERT pill for that. So I use the spreadsheet functionally to “build” what I’m eating and calculate the total grams of protein and fat; which helps me ‘calculate’ how much PERT to take (based on my previous titration efforts I know I can do up to 30g of fat and protein each in one PERT pill of the size of my prescription)

Example in my spreadsheet showing a meal and the in-progress data entry of entering the formula to add up two meal items' worth of fat and protein

Essentially, this has become a real-time calculator to add up the numbers every time I eat. Sure, I could do this in my head, but I’m usually multitasking and deciding what I want to eat and writing it down, doing something else, doing yet something else, then going to make my food and eat it. This helps me remember, between the time I decided – sometimes minutes, sometimes hours in advance of when I start eating and need to actually take the enzymes – what the counts are and what the PERT dosing needs to be.

I have done some neat retrospective analysis, of course – last year I had estimated that I took thousands of PERT pills (more on that here). I was able to do that not because it’s “fun” to track every pill that I swallow, but because I had, as a result of functional self-tracking of what I was eating to determine my PERT dosing for everything I ate, had a record of 99% of the enzyme pills that I took last year.

I do have some things that I’m no longer entering in my spreadsheet, which is why it’s only 99% of what I eat. There are some things like a quick snack where I grab it and the OTC enzymes to match without thought, and swallow the pills and eat the snack and don’t write it down. That maybe happens once a week. Generally, though, if I’m eating multiple things (like for a meal), then it’s incredibly useful in that moment to use my spreadsheet to add up all the counts to get my dosing right. If I don’t do that, my dosing is often off, and even a little bit “off” can cause uncomfortable and annoying symptoms the rest of the day, overnight, and into the next morning.

So, I have quite the incentive to use this spreadsheet to make sure that I get my dosing right. It’s functional: not for the perceived “fun” of writing things down.

–

It’s the same thing that happens when I run long runs. I need to fuel my runs, and fuel (food) means enzymes. Figuring out how many enzymes to dose as I’m running 6, 9, or 25 hours into a run gets increasingly harder. I found that what works for me is having a pre-built list of the fuel options; and a spreadsheet where I quickly on my phone open it and tap a drop down list to mark what I’m eating, and it pulls in the counts from the library and tells me how many enzymes to take for that fuel (which I’ve already pre-calculated).

It’s useful in real-time for helping me dose the right amount of enzymes for the fuel that I need and am taking every 30 minutes throughout my run. It’s also useful for helping me stay on top of my goal amounts of calories and sodium to make sure I’m fueling enough of the right things (for running in general), which is something that can be hard to do the longer I run. (More about this method and a template for anyone who wants to track similarly here.)

–

The TL;DR point of this is: I don’t track things for fun. I track things if and when they’re functionally useful, and primarily that is in real-time medical decision making.

These methods may not make sense to you, and don’t have to.

It may not be a method that works for you, or you may not have the situation that I’m in (T1D, Graves, celiac, and EPI – fun!) that necessitates these, or you may not have the goals that I have (ultrarunning). That’s ok!

But don’t say that you “couldn’t” do something. You ‘couldn’t’ track what you consumed when you ran or you ‘couldn’t’ write down what you were eating or you ‘couldn’t’ take that many pills or you ‘couldn’t’ inject insulin or…

You could, if you needed to, and if you decided it was the way that you could and would be able to achieve your goals.

Two New Children’s Books – And How I Illustrated Them Without Being An Illustrator

by Dana Lewis

I wrote two new books! You can find “Cooper’s Crutches” and “Chloe’s Cookies” on Amazon in paperback and Kindle formats.

Two children's books lay on the carpet: Cooper's Crutches and Chloe's Cookies, both written by Dana M. Lewis

—

One of these books I wrote years ago, about a month or so after I broke my ankle, inspired by the initial reactions from one of my nephews about me being on crutches. This new book is called Cooper’s Crutches.

I let it sit for several years, though, because I didn’t have illustrations for it. I’ve used a different illustrator or artist for each of my books so far.

A few weeks ago, though, I started thinking about experimenting with AI-driven illustrations for various projects, including wondering whether I could illustrate a children’s book or other projects with it.

The answer is: not yet. It’s hard to create a character who persists throughout image generation for enough scenes that can fit a two-dozen page storyline, although it would probably work for one or two images! (Especially if you managed to AI-illustrate a character that you could then place in various AI-illustrated scenes. The challenge is also having different poses for the same character, to illustrate a story.)

It then occurred to me to search around and I stumbled across a library of free, open source illustrations. Woohoo! Maybe those would work. Actually, I couldn’t even download that one due to a bug in their site, so I started searching (now that I knew to look for it) and found several other sets of illustrations. I even found a site called Blush that had a series of illustrations by various artists, and a web interface (GUI) that allowed you to modify images slightly then download them.

It’s like paper dolls, but digital – you can adjust the coloring of the hair, hair style, accessories, etc to modify the illustrated character.

I gave it a try, building some illustrations and downloading them. I then did some DIY-ing again in PowerPoint to modify them to help illustrate the full story in my children’s book. I printed a proof copy, but the versions I had downloaded for free were too low resolution and were fuzzy. However, the idea as a whole had worked great! I signed up for a free trial of the “Pro” version of Blush which enabled me to download both high-resolution PNG (image) files as well as SVG files.

Having SVG files theoretically would enable me to further modify and customize these, but as a non-illustrator even though I could load them in Figma and modify them, I still struggled to export them as high-enough resolution to work for printing in a book. I gave up and went back to DIY-ing the modifications in PowerPoint. They’re not perfect, but for the use case of my books (for a very small, niche audience), I doubt they care that they’re not perfect.

Here’s a selection of a few of the pages (not in order) in Cooper’s Crutches:

Excerpt images from Cooper's Crutches by Dana M. Lewis

At the same time that I started playing with these illustrations, I wondered whether I had any more ideas for books that I could illustrate at the same time with the same methods. I had had Cooper’s book written and waiting to illustrate; I now had a method to illustrate, but I wasn’t sure what story to illustrate.

But like all of my children’s books, inspiration again struck based on a situation and conversation I had with one of my nieces. She’s newly lactose intolerant and is taking lactase any time she has milk, like with milk and cookies for a bedtime snack. Lactase is an enzyme…and I’ve been taking enzymes of another sort this year, for exocrine pancreatic insufficiency.

Thus the next book, Chloe’s Cookies, was created!

Here’s a selection of a few of the pages (not in order) in the book:

Excerpt images from Chloe's Cookies, by Dana M. Lewis

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Both Cooper’s Crutches and Chloe’s Cookies are illustrated with illustrations from a variety of artists who make their work available on Blush, including: Veronica Iezzi; Susana Salas; Pau Barbaro; Ivan Mesaroš; Mariana Gonzalez Vega; Deivid Saenz; and Cezar Berje.

The neat thing about Blush is their license: you can use the illustrations in any way, including commercial products, and you can modify or combine it with other works (like I did, modifying the images and combining illustrations from various artists) however you like.

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I think I’ve likely maximized my use of Blush between these two books; unless other collections get uploaded in the future. But if you need a handful of illustrations that you can customize, definitely check it out!

And if you have ideas for other cool illustration libraries that I could use for future books, please let me know! (Or if you’re an artist who would like to contribute to one of my future books. :) )

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TLDR:

I have two new children’s books, and you can find “Cooper’s Crutches” and “Chloe’s Cookies” on Amazon in paperback and Kindle formats.

Illustrating Children's Books without being an illustrator, plus introducting two new children's books by Dana M. Lewis

One Year of Pancreatic Enzyme Replacement Therapy for Exocrine Pancreatic Insufficiency (EPI or PEI)

by Dana Lewis

I’ve had exocrine pancreatic insufficiency (EPI or PEI) for a full year now and have been taking pancreatic enzyme replacement therapy (PERT) ever since diagnosis.

I’ve written about what EPI is, what it’s like to go on PERT, and a variety of other posts (such as how I ultimately taught myself to titrate and adjust my dosing of PERT based on what I am eating) in the last year – you can see all my EPI posts listed at DIYPS.org/EPI. I also wrote recently about estimating the costs of PERT for a year, in which I had tallied up the number of PERT pills I had taken so far in the year. Since I’ve now hit the one year mark, I wanted to revisit that math.

In 365 days of pancreatic enzyme replacement therapy, I have consumed (at least) 3,277 pills.

That’s an average of 8.98 pills per day!

As I previously wrote, the number of pills is in part because I’m trying to lower the total costs (to everyone involved in paying for it) of my PERT by taking a mix of prescription PERT and OTC enzymes to try to balance effective dosing, cost, and the number of pills I swallow. I take one pill with my standard breakfast, so the remaining ~8 average pills are usually split between lunch, dinner, and/or a snack if I have one. (This is also influenced by my ultrarunning where I typically take ~2 pills every 30 minutes with my snacks/fuel for running, so long training days of 4 hours would involve 8 or more pills just for running fuel; obviously longer runs would involve even more, which drives the pills/day average higher.) If I wanted to reduce the total number of pills, I could by driving up the cost by using bigger, prescription PERT pills in lieu of some of the OTC options. However, most of the time, 3-4 pills per meal mixed between prescription and OTC is doable for me. I typically would choose to round up more PERT and reduce OTC pill count when I’m less certain about the macronutrient content of the meal or I want more confidence in better outcomes.

Speaking of better outcomes – is PERT effective?

For me, yes!

Overall, I feel so much better. Most of the time, I hardly ever have ANY symptoms (such as gas, bloating, or feeling icky) let alone my more extreme symptoms of “disrupting” my GI system. In the year of taking PERT, 78% of the time I had no disruption or any noticeable symptoms.

The average length of time between days with noticeable symptoms was 5.37 days.

And, if you look at the second half of the year, this increased quite a bit: 88% of the time I had no noticeable symptoms and the streak length of days between symptom days increased to 6.81 average days! The max streak is now 28 days (and counting)!

Showing the increasing length of streaks of consecutive days where I did not have any GI symptoms. The trend line shows a steady increase in the length of these streaks throughout the year.

That’s approaching a full month without any GI symptoms (woohoo) of any kind, and means less than 1 or 2 instances of symptoms per month for me in the last several months. That’s probably better than average for most people, even people without known GI conditions, and getting a lot closer back to my personal level of “normal”.

And obviously, this is continuing to increase over time as I improve my PERT dosing strategy.

This is pretty meaningful to think about.

PERT made a difference overall straight away, but I was also starting with very small portions of food and a very restricted diet. (This is because before I realized I had EPI I had done all kinds of behavioral gymnastics to try to eliminate foods like onion, garlic, and other foods that seemed to cause issues). So first I figured out PERT successfully for what I was eating; then carefully expanded my portion sizes back to typical quantities of food; then slowly expanded my diet to cover all the foods I used to eat before I started having all my GI problems.

It very much felt like I had three phases this year:

  • Phase 1: Use PERT to cover small quantities of small varieties of food. Figure out what foods I could eat that could “fit” into one PERT pill.
  • Phase 2: Start to figure out what quantities of food I wanted to eat, and get the PERT to match the food.
  • Phase 3: Finish expanding out my food choices to cover everything I was eating before and tackling all my “firsts” with PERT.

You can see this evolution in my diet, too, when you look at the relative changes in the amount of fat and protein I have eaten over the course of the year. (The one big obvious outlier on the graph in October is my 82 mile ultramarathon where I ate every 30 minutes for 25 hours!) There’s been a slight increase in my fat consumption over the course of the year, and protein consumption has stayed relatively flat as I’ve been making a very conscious effort to eat enough protein to fuel my ultrarunning endeavors throughout the year.

You can then see the relationship with increased number of pills (albeit pills with different amounts of lipase) over the course of the year, relative to the fat and protein consumed.

Displaying lines showing the relative amounts of fat and protein consumed throughout the year, plus the number of enzyme pills per day throughout 2022.

(Note that the pills per day is using a hidden right axis, whereas the fat and protein share the same left axis numbers, also not shown)

For anyone who is new (just diagnosed or recently diagnosed within a few weeks or months) to EPI, here’s what I would hope you take away:

  1. PERT works, but it needs to match what you are eating. Come up with a strategy (here’s mine – you can use it!) to adjust your dosing to match what you are eating. What you eat changes, and so should your PERT dosing.
  2. Things will improve over time, and you will get more effective at matching your dosing to what you are eating. You should be able to have more and more “streaks” of days without symptoms, or with reduced symptoms. However, this may take a few months, because you’ll likely also be – at the same time – re-expanding your variety of foods that you’re eating. The combination of eating more and different foods AND tweaking your dosing can make it take a little bit longer to figure it all out.
  3. If you’re not seeing success, talk with your doctor. There are different sizes of PERT pills – if you’re struggling to take X number of pills, you may be able to take fewer pills of a bigger size. There are different brands of PERT – so if one isn’t working for you (after you match your dosing to how much fat and protein is in each meal), you can switch and try another brand. There are also OTC options, which you can use to “top off” your prescription PERT or substitute, but you need to have an effective strategy for adjusting your dose that you can translate to your OTCs to be sure that they’re working.
One year of pancreatic enzyme replacement therapy for EPI by Dana M. Lewis

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(PS – you can find my previous posts about EPI at DIYPS.org/EPI.)

Looking Back Through 2022 (What You May Have Missed)

by Dana Lewis

I ended up writing a post last year recapping 2021, in part because I felt like I did hardly anything – which wasn’t true. In part, that was based on my body having a number of things going on that I didn’t know at the time. I figured those out in 2022 which made 2022 hard and also provided me with a sense of accomplishment as I tackled some of these new challenges.

For 2022, I have a very different feeling looking back on the entire year, which makes me so happy because it was night and day (different) compared to this time last year.

One major example? Exocrine Pancreatic Insufficiency.

I started taking enzymes (pancreatic enzyme replacement therapy, known as PERT) in early January. And they clearly worked, hooray!

I quickly realized that like insulin, PERT dosing needed to be based on the contents of my meals. I figured out how to effectively titrate for each meal and within a month or two was reliably dosing effectively with everything I was eating and drinking. And, I was writing and sharing my knowledge with others – you can see many of the posts I wrote collected at DIYPS.org/EPI.

I also designed and built an open source web calculator to help others figure out their ratios of lipase and fat and protease and protein to help them improve their dosing.

I even published a peer-reviewed journal article about EPI – submitted within 4 months of confirming that I had it! You can read that paper here with an analysis of glucose data from both before and after starting PERT. It’s a really neat example that I hope will pave the way for answering many questions we all have about how particular medications possibly affect glucose levels (instead of simply being warned that they “may cause hypoglycemia or hyperglycemia” which is vague and unhelpful.)

I also had my eyes opened to having another chronic disease that has very, very expensive medication with no generic medication option available (and OTCs may or may not work well). Here’s some of the math I did on the cost of living with EPI and diabetes (and celiac and Graves) for a year, in case you missed it.

Another other challenge+success was running (again), but with a 6 week forced break (ha) because I massively broke a toe in July 2022.

That was physically painful and frustrating for delaying my ultramarathon training.

I had been successfully figuring out how to run and fuel with enzymes for EPI; I even built a DIY macronutrient tracker and shared a template so others can use it. I ran a 50k with a river crossing in early June and was on track to target my 100 mile run in early fall.

However with the broken toe, I took the time off needed and carefully built back up, put a lot of planning into it, and made my attempt in late October instead.

I succeeded in running ~82 miles in ~25 hours, all in one go!

I am immensely proud of that run for so many reasons, some of which are general pride at the accomplishment and others are specific, including:

  • Doing something I didn’t think I could do which is running all day and all night without stopping
  • Doing this as a solo or “DIY” self-organized ultra
  • Eating every 30 minutes like clockwork, consuming enzymes (more than 92 pills!), which means 50 snacks consumed. No GI issues, either, which is remarkable even for an ultrarunner without EPI!
  • Generally figuring out all the plans and logistics needed to be able to handle such a run, especially when dealing with type 1 diabetes, celiac, EPI, and Graves
  • Not causing any injuries, and in fact recovering remarkably fast which shows how effective my training and ‘race’ strategy were.

On top of this all, I achieved my biggest-ever running year, with more than 1,333 miles run this year. This is 300+ more than my previous best from last year which was the first time I crossed 1,000 miles in a year.

Professionally, I did quite a lot of miscellaneous writing, research, and other activities.

I spent a lot of time doing research. I also peer reviewed more than 24 papers for academic journals. I was asked to join an editorial board for a journal. I served on 2 grant review committees/programs.

I also wrote a lot.

*by ton, I mean way more than the past couple of years combined. Some of that has been due to getting some energy back once I’ve fixed missing enzyme and mis-adjusted hormone levels in my body! I’m up to 40+ blog posts this year.

And personally, the punches felt like they kept coming, because this year we also found out that I have Graves’ disease, taking my chronic disease count up to 4. Argh. (T1D, celiac, EPI, and now Graves’, for those curious about my list.)

My experience with Graves’ has included symptoms of subclinical hyperthyroidism (although my T3 and T4 are in range), and I have chosen to try thyroid medication in order to manage the really bothersome Graves’-related eye symptoms. That’s been an ongoing process and the symptoms of this have been up and down a number of times as I went on medication, reduced medication levels, etc.

What I’ve learned from my experience with both EPI and Graves’ in the same year is that there are some huge gaps in medical knowledge around how these things actually work and how to use real-world data (whether patient-recorded data or wearable-tracked data) to help with diagnosis, treatment (including medication titration), etc. So the upside to this is I have quite a few new projects and articles coming to fruition to help tackle some of the gaps that I fell into or spotted this year.

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And that’s why I’m feeling optimistic, and like I accomplished quite a bit more in 2022 than in 2021. Some of it is the satisfaction of knowing the core two reasons why the previous year felt so physically bad; hopefully no more unsolved mysteries or additional chronic diseases will pop up in the next few years. Yet some of it is also the satisfaction of solving problems and creating solutions that I’m uniquely poised, due to my past experiences and skillsets, to solve. That feels good, and it feels good as always to get to channel my experiences and expertise to try to create solutions with words or code or research to help other people.

How To Dose Pancreatic Enzyme Replacement Therapy (PERT) By What You Are Eating – And A Free Web Calculator To Calculate Enzyme Dosing

by Dana Lewis

I’ve had exocrine pancreatic insufficiency (known as EPI or PEI) for a year now. I have had type 1 diabetes for 20+ years and am experienced in adjusting my medication (previously insulin) in response to everything that I eat or drink.

With EPI, though, most people are given a static prescription, such as one saying “take 3 pills with each meal”.

Well, what if every meal is not the same size?

Let’s think about a couple of hypothetical meals.

Meal A: Baked chicken, sweet potato, and broccoli. This meal likely results in ~31 grams of carbohydrates; 7 grams of fat; and ~30 grams of protein.

How would you dose for this meal? Most people do what they are told and dose based on the fat content of the meal. If they typically take 3 pills, they may take all 3 pills or take fewer pills if this is less fat than their typical meal.

Many people post in EPI social media groups post about restaurant dinners that sound like this complaining about side effects they experience with this type of meal. The commonly mentioned theory is that maybe the chicken is cooked in oil. However, the entire meal is so low in fat compared to other meals that it is unlikely to be the fat content causing symptoms if the typical meal dose of PERT is used, even if the chicken is cooked in oil.

Let’s discuss another meal.

Meal B: A bowl of chili topped with cheddar cheese and a piece of cornbread.

This meal results in ~45 grams of carbs; ~30 grams of fat; and ~42 grams of protein.

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The fat content between these two meals is quite a bit different (7 grams of fat versus 30 grams of fat). Yet, again, most people are told simply to dose by the amount of fat, so someone might take a lower dose for the chicken meal because it has so little fat relative to other meals.

This could result in symptoms, though. The pancreas actually produces THREE kinds of enzymes. That’s why pancreatic enzyme replacement therapy medicine, called pancrelipase as a common name, has THREE types of enzymes: lipase, to help digest fat; protease, to help digest protein; and amylase, to help digest carbohydrates. A typical PERT pill has different amounts of these three enzymes, although it is usually described by the size/quantity of lipase it has – yet the other enzymes still play an important role in digestion.

I’ve observed that it’s pretty common for people to completely ignore the protein in what they’re eating. But as I mentioned, that seems to be the most obvious thing to try dosing for if “low fat” meals are causing issues. (It could also be sensitivity to carbohydrates, but the above example meal is fairly low carbohydrate.) My personal experience has also been that I am sensitive to fat and protein, and dose my meals based on these macronutrients, but other than eating fruit on an empty stomach (when I would add PERT/enzyme, despite the zero fat and protein in it), I don’t need to dose based on carbohydrates.

But I do need to dose for BOTH fat AND protein in what I’m eating. And I have a theory that a lot of other people with EPI do, too.

So how do you do this?

How do you dose for meals of different sizes, and take into account both fat and protein for these varying meals?

First, you need to figure out what dosing “works” for you and begin to estimate some “ratios” that you can use.

Most people begin experimenting and find a quantity of food that they can eat with the dose that they typically take. This meal size is going to vary person to person; it’ll also vary based on what it is in the meal they’re eating (such as chicken vs chili, from the above examples).

Once you find a dose that “works” and try it out a few times on the same meal, you can use this to determine what your ratios/dosing should be.

How?

Let’s use two examples with different dose sizes and types of PERT.

(PS – did you know there are 6 FDA-approved PERT brands in the US? Sometimes one works for someone where a different brand does not. If you’re struggling with the first type of PERT you’ve been prescribed, and you’ve already ruled out that you’re dosing correctly (see below), make sure to talk to your doctor and ask about trying a different brand.)

First, let’s calculate the ratios of lipase needed per gram of fat.

Let’s say the meal that “works” with your typical dose is 30 grams of fat. If 30 grams of fat is fine on your current dose, I would eat another meal with a slightly higher amount of fat (such as 35 or 40 grams of fat). When you get to an amount that “doesn’t work” – meaning you get symptoms – then you go back to the dose that does “work” to use in the math.

If the meal that “worked” was 30 grams of fat I would do the following math for each of these two examples:

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Example A: You need 1 pill of Zenpep 25,000 to cover this meal

Example B: You need 3 pills of Creon 36,000 to cover this meal

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Example A: 1 pill of Zenpep 25,000 is 1 multiplied by 25,000, or 25,000 units of lipase. Take that (25,000) and divide it by the grams of fat in the meal that works (30 grams). This would be 25,000/30 = 833. This means you need 833 units of lipase to “cover” 1 gram of fat. You can round up to ~1000 units of lipase to make it easier; your ratio would be 1000 units of lipase for every 1 gram of fat.

Example B: 3 pills of Creon 36,000 is 3 multiplied by 36,000, which is 108,000 units of lipase. Take that number (108,000) and divide it by the grams of fat in the meal that works (30 grams). This would be 108,000/30 = 3,600. This means you need 3,600 units of lipase to “cover” 1 gram of fat.

The next time you wanted to eat a meal, you would look at the grams of fat in a meal.

Let’s say you’re going to eat two bowls of chili and two pieces of cornbread. Let’s assume that is about 64 grams of fat. (Two bowls of chili and two cornbread is 30×2=60, plus a bit of butter for the cornbread so we’re calling it 64 grams of fat).

Example A: Take the meal and multiply it by your ratio. 64 (grams of fat) x 1,000 (how many units of lipase you need to cover 1 grant of fat) = 64,000. A Zenpep 25,000 has 25,000 lipase. Since you need 64,000 (units of lipase needed to cover the meal), you would divide it by your pill/dose size of 25,000. 64,000 divided by 25,000 is 2.56. That means for these ratios and a prescription of Zenpep 25,000 pill size, you need *3* Zenpep 25,000 to cover a meal of 64g of fat. (Remember, you can’t cut a PERT, so you have to round up to the next pill size.)

Example B: Take the meal and multiply it by your ratio. 64 (grams of fat) times 3,600 (how many units of lipase you need to cover 1 grant of fat) = 230,400. A Creon 36,000 has 36,000 lipase. Since you need 230,400 units of lipase to cover the meal, you would divide it by your pill/dose size of 36,000. 230,400 divided by 36,000 is 6.4. This means you need *7* Creon 36,000 to cover a meal of 64g of fat. (Again, you can’t cut a PERT, so you have to round up to 7 from 6.4.)

Another way to think about this and make it easier in the future is to determine how much one pill “covers”.

Example A: A Zenpep 25,000 “covers” 25 grams of fat if my ratio is 1000 units of lipase for every gram of fat (25,000/1000=25).

So if a meal is under 25g of fat? 1 pill. A meal under 50g (25×2)? 2 pills. 75g (25×3)? 3 pills. And so on. Once you know what a pill “covers”, it’s a little easier; you can simply assess whether a meal is above/below your pill size of 1 (25g), 2 (50g), 3 (75g) etc.

Example B: A Creon 36,000 “covers” 10 grams of fat if my ratio is 3,600 units of lipase for every gram of fat (36,000/3600=10).

So if a meal is under 10 grams of fat? 1 pill. 20 grams of fat is 2 pills (10×2); 30 grams of fat is 3 pills (10×3); etc.

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When people with EPI share experiences online, they often describe their dose size (such as 1 x 25,000 or 3 x 36,000 like examples A and B above) for most meals, but the meal size and composition is rarely discussed.

Personally, I can eat pretty widely varying amounts of fat in each meal on a day to day basis.

That’s why, instead of a flat dosing that works for everything (because I would be taking a LOT of pills at every meal if I was trying to take enough to cover my highest fat meals every time), I have found it to be more effective to estimate each meal to determine my meal dosing.

Remember that meal estimates aren’t very precise. If you use a nutrition panel on a box serving, the serving size can vary a bit. Restaurants (especially chains) have nutrition information, but the serving size can vary. So recognize that if you are calculating or estimating 59 grams of fat and that means either 2 vs 3 pills or 6 vs 7 pills, that you should use your judgment on whether you want to round up to the next pill number – or not.

Let’s put the hypothetical meals side by side and compare dosing with examples A and B from above:

Example of how much PERT is needed for two different meals based on dose ratios from Examples A and B

Using the previous meal examples with either 7 or 30 grams of fat:

  • With Example A (ratio of 25g of fat for every 1 pill, or 1000 units of lipase to cover 1 gram of fat), we would need 1 pill for the chicken meal and 2 for the chili meal. Why? The chili is >25 grams of fat which means we need to round up to 2 pills.
  • With Example B (ratio of 10 grams of fat for every 1 pill or 3600 units of lipase to cover 1 gram of fat), we would need 1 pill to cover the chicken (because it’s less than 10 grams of fat) and 3 – or more – pills for the chili. Why “or more”? Well, something like chili is likely to be imprecisely counted – and if you’re like me, you’d want a bit of extra cheese, so chances are I would round up to a 4th pill here to take in the imprecision of the measurements of the ingredients.

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PERT Dosing for Protein

Wait, didn’t you say something about protein?

Yes, I did. Fat isn’t the only determinant in this math!

I do the same type of math with grams of protein and units of protease. (Remember, PERT has all 3 types of enzymes, even though it is labeled by the amount of lipase. You can look online or on the bottle label to see how much protease is in your PERT.)

For our examples, Zenpep 25,000 contains 85,000 units of protease. Creon 36,000 contains 114,000 units of protease.

For the meal that ‘worked’ of 30 grams of fat, we also want to know the protein that worked. For easy math, let’s also say 30 grams of protein is in this meal.

Following the same math as before:

Example A (Zenpep 25,000): 30 grams of protein divided by 1×85,000 units of protease is ~2,833 units of protease to every 1 gram of protein. Again, I like to think about how much 1 pill “covers” protein-wise. In this case, 1 Zenpep 25,000 “covers” 30 grams of protein.

Example B (Creon 36,000): 30 grams of protein divided into 3 x 114,000 units of protease is 11,400 units of protease per gram of protein. Again, I like to think about how much 1 pill “covers” protein-wise as well. In this case, 1 Creon 36,000 “covers” 10 grams of protein.

Here’s how many pills are needed for protein:

Example of how much PERT is needed for two different meals based on dose ratios from Examples A and B, showing both protein and fat quantities

  • With Example A (ratio of 30g of protein for every 1 pill), we would need 1 pill for the chicken meal and 2 for the chili meal. Why? The chili is 42, which is greater than (30×1) grams of protein which means we need to round up to 2 pills.
  • With Example B (ratio of 10 grams of protein for every 1 pill), we would need 3 or more pills to cover the chicken. Why 3 or more? Again, it’s on the top edge of what 3 pills would cover, so I’d be likely to round up to 4 pills here. For the chili, 5 pills are needed (42 is more than 4 x 10 and is less than 5 x 10).

So how do you decide the number of pills to take for these meals? Let’s go back to our two example meals and compare the amount needed, pill-wise, for both fat and protein for each meal and each example.

Example of how much PERT is needed for two different meals based on dose ratios from Examples A and B and comparing the number of pills for fat and protein

When the pill numbers MATCH (e.g. the same number needed for fat and protein), which is the case for both examples with Zenpep 25,000, it’s easy: take that number of pills total! For Zenpep 25,000, I would take 1 pill for the Chicken (1 fat | 1 protein); and I would take 2 pills for the Chili (2 fat | 2 protein). Remember that PERT pills contain all three enzymes, so the fat and protein are sufficiently *each* covered by the quantities of lipase and protease in this pill type.

When the pill numbers are DIFFERENT between your fat and protein estimates, you use the LARGER number of pills. For Creon 36,000, with the chicken meal the protein quantity is much larger than the fat quantity; I would in this case dose 4 total pills (1 fat | 4 protein), which would then cover the protein in this meal and would also sufficiently cover the amount of fat in this meal. For the chili meal, it is closer: I estimated needing 4 pills for fat and 5 for protein; in this case, I would take 5 total pills which would then successfully cover the protein and the fat in the meal.

If you find the math challenging to do, don’t worry: once you determine your ratios and figure out how much one pill “covers”, it gets a lot easier.

And I made a tool to help you!

Check out this free enzyme calculator which does the math to determine the ratios on exactly how much one pill “covers” for your successful meal.

Here’s what it looks like using the two examples above:

Example of Part 1 of the EPI Enzyme Calculator using Zenpep 25,000, where 1 pill covers 30 grams of fat and 30 grams of protein. Example of Part 1 of the EPI Enzyme Calculator using Creon 36,000, where 3 pills covers 30 grams of fat and 30 grams of protein.

You can input your meal that “works”, what your dose is that “works” (the number of pills and pill type), and it will share what your ratios are and what one pill “covers”.

You can also use the second part of the calculator to estimate the amount you need for a future meal! Say it’s coming up on a holiday and you’re going to eat a much larger meal than you normally do.

You can input into the calculator that you’ll be eating 90 grams of fat and 75 grams of protein.

Here’s the example with our dose from Example A (Zenpep 25,000):

Example of Part 2 of the EPI Enzyme Calculator using Zenpep 25,000, with a future larger meal of 90 grams of fat and 75 grams of protein.

Here’s the example large meal with our dose from Example B (Creon 36,000):

Example of Part 2 of the EPI Enzyme Calculator using Creon 36,000, with a future larger meal of 90 grams of fat and 75 grams of protein.

You can also hit the button to expand the calculations to see the math it is doing, and how it compares between the fat and protein pill estimates to see what “drives” the total number of pills needed.

You can also hit the button to expand the calculations to see the math it is doing, and how it compares between the fat and protein pill estimates to see what “drives” the total number of pills needed, with the calculation view expanded to show all the details

You can even download a PDF with this math to have on hand. Here’s what the PDF download looks like for Example B (Creon 36,000):

Example of a PDF print view of the same data from previous screenshots with a Creon 36000 example

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Switching dose sizes or PERT brand types

This calculator can also be useful if you were originally prescribed a smaller quantity of PERT (e.g. Creon 3000 or Zenpep 3000) and you find yourself taking many numbers of these pills (6 or more) to cover a small meal for you, let alone more pills for a larger meal.

You can input this into the calculator and get your ratios; then in the second part, identify a different pill size, to see how many numbers of pills you’d take on a different dose.

Example switching from one size of PERT pill to another size

You can also use it to help you understand how much you might need if you are switching between brands. Let’s say you were prescribed Zenpep 25,000 and you need to try Creon, either because you don’t think Zenpep works well for you or your insurance is more willing to cover the Creon brand.

You would use the top part of the calculator with your current brand and size (e.g. Zenpep 25,000 of which you take 6 for a standard meal of 30 grams of fat and 30 grams of protein) and then input the new brand and size and the same size meal (e.g. Creon 36,000 and another 30 grams of fat and 30 grams of protein meal) to see that you’d likely need 5 Creon 36,000 to match the 6 Zenpep 25,000 you were taking for a standard size (30 gram of fat and 30 gram of protein) meal.

Example of using the calculator to estimate the different number of pills for a different brand and size of PERT pill

Note: I’m not suggesting 30 grams of fat and protein at each meal is “standard” or the “right” size of the meal – I picked arbitrary numbers here to illustrate these examples, so make sure to include the meal that your PERT dosing successfully covers for YOU!

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As a reminder, I’m not a doctor – I’m a person living with EPI. None of this is medical advice. I use this math and this calculator for my own personal use and share it in case it’s helpful to others. If you have questions, please do talk to your doctor. If you’re still experiencing symptoms with your enzyme dosing, you definitely should talk with your doctor. Your prescription size might need updating compared to what you were originally prescribed.

Also, please note that the calculator is open source; you can find the code here, and I welcome contributions (pull requests) and suggestions! You can leave feedback on Github or share feedback in this form. For example, if you’re using a different type of enzyme not listed in the calculator (currently 2/6 of the US FDA-approved versions are listed), please let me know and I can work to add the relevant list.

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PS – You can find my other posts about EPI at DIYPS.org/EPI.

Dealing With And Avoiding Chronic Disease Management Burnout

by Dana Lewis

I’ve been thinking about juggling lately, especially as this year I’ve had to add a series of new habits and behaviors and medications to manage not one but two new chronic diseases. Getting one new chronic disease is hard; getting another is hard; and the challenges aren’t necessarily linear or exponential, and they’re not necessarily obvious up front.

But sometimes the challenges do compound over time.

In January when I started taking pancreatic enzyme replacement therapy (PERT) for exocrine pancreatic insufficiency (EPI or PEI), I had to teach myself to remember to take enzymes at every meal. Not just some time around the meal, but 100% every time before (by only a few minutes) or right at the start of the meal. With PERT, the timing matters for efficacy. I have a fast/short feedback loop – if I mis-time my enzymes or don’t take them, I get varying symptoms within a few hours that then bother me for the rest of the day, overnight, and into the next morning. So I’m very incentivized to take the enzymes and time them effectively when I eat. However, as I started to travel (my first trip out of the country since the pandemic started), I was nervous about trying to adapt to travel and being out of my routine at home where I’ve placed enzymes in visible eye sight of every location where I might consume food. Thankfully, that all went well and I managed not to forget taking enzymes when I ate and all was well. But I know I’m still building the habit of taking enzymes and eating, and that involves both always having enzymes with me and remembering to get them out and take them. It sounds like a trivial amount of things to remember, but this is added on top of everything else I’m doing for managing my health and well-being.

This includes other “simple” things like taking my allergy medications – because I’m allergic to cats (and we have them!), trees, dust, etc. And vitamins (I’m vitamin D deficient when I don’t take vitamin D).

And brushing my teeth and flossing.

You do that too, right? Or maybe you’re one of those people who struggle to remember to floss. It’s normal.

The list of well-being management gets kind of long when you think about all the every day activities and habits you have to help you stay at your best possible health.

Eat healthy! (You do that, right? 😉 )

Hydrate!

Exercise!

Etc.

I’ve also got the background habits of 20 years of living with diabetes: keeping my pump sites on my body; refilling the reservoir and changing the pump site every few days; making sure the insulin doesn’t get too hot or cold; making sure my CGM data isn’t too noisy; changing my CGM sensor when needed; estimating ballpark carbs and entering them and/or temporary targets to indicate exercise into my open source AID; keeping my AID powered; keeping my pump powered; keeping my phone – which has my CGM visibility on it – powered and nearby. Ordering supplies – batteries and pump sites and reservoirs and CGM transmitters and CGM sensors and insulin and glucagon.

Some of these are daily or every few days tasks; others are once or twice a month or every three months.

Those stack up sometimes where I need to refill a reservoir and oops, get another bottle of insulin out of the fridge which reminds me to make a note to check on my shipment of insulin which hasn’t arrived yet. I also need to change my pump site and my CGM sensor is expiring at bedtime so I need to also go ahead and change it so the CGM warmup period will be done by the time I go to sleep. I want to refill my reservoir and change the pump site after dinner since the dinner insulin is more effective on the existing site; I think of this as I pull my enzymes out to swallow as I start eating. I’ll do the CGM insertion when I do my pump site change. But the CGM warmup period is then in the after-dinner timeframe so I then have to keep an eye on things manually because my AID can’t function without CGM data so 2 hours (or more) of warmup means extra manual diabetes attention. While I’m doing that, I also need to remember to take my allergy medication and vitamin D, plus remembering to take my new thyroid medication at bedtime.

Any given day, that set of overlapping scenarios may be totally fine, and I don’t think anything of them.

On other days, where I might be stressed or overwhelmed by something else – even if it’s not health-related – that can make the above scenario feel overwhelmingly difficult.

One of the strategies I discussed in a previous post relative to planning travel or busy periods like holidays is trying to separate tasks in advance (like pre-filling a reservoir), so the action tasks (inserting a pump site and hooking it up to a new reservoir) don’t take as long. That works well, if you know the busy period is coming.

But sometimes you don’t have awareness of a forthcoming busy period and life happens. Or it’s not necessarily busy, per se, but you start to get overwhelmed and stressed and that leaks over into the necessary care and feeding of medical stuff, like managing pump sites and reservoirs and sensors and medication.

You might start negotiating with yourself: “do I really need to change that pump site today? It can wait until tomorrow”. Or you might wait until your reservoir actually hits the ‘0’ level (which isn’t fully 0; there’s a few units plus or minus some bubbles left) to refill it. Or other things like that, whether it’s not entering carbs into your pump or AID or not bolusing. Depending on your system/setup, those things may not be a big deal. And for a day or two, they’re likely not a big deal overall.

But falling into the rut of these becoming the new normal is not optimal – that’s burnout, and I try to avoid getting there.

When I start to have some of those thought patterns and recognize that I have begun negotiating with myself, I try to voice how I’m feeling to myself and my spouse or family or friends. I tell them I’m starting to feel “crispy” (around the edges) – indicating I’m not fully burnt out, but I could get all the way to burnout if I don’t temporarily change some things. (Or permanently, but often for me temporary shifts are effective.)

One of the first things I do is think through what is the bare minimum necessary care I need to take. I go above and beyond and optimize a LOT of things to get above-target outcomes in most areas. While I like to do those things, they’re not necessary. So I think through the list of necessary things, like: keeping a working pump site on my body; keeping insulin in a reservoir attached to my pump; keeping my CGM sensor working; and keeping my AID powered and nearby.

That then leaves a pile of tasks to consider:

  1. Not doing at all for ___ period of time
  2. Not doing myself but asking someone else to do for ____ period of time

And then I either ask or accept the offers of help I get to do some of those things.

When I was in high school and college, I would have weekends where I would ask my parents to help. They would take on the task of carb counting (or estimating) so I didn’t have to. (They also did HEAPS of work for years while I was on their insurance to order and keep supplies in the house and wrangle with insurance so I didn’t have to – that was huge background help that I greatly appreciated.)

Nowadays, there are still things I can and do get other people to help with. Sometimes it’s listening to me vent (with a clear warning that I’m just venting and don’t need suggestions); my parents often still fill that role for me! Since I’m now married and no longer living alone, Scott offers a lot of support especially during those times. Sometimes he fills reservoirs for me, or more often will bring me supplies from the cabinet or fridge to wherever I’m sitting (or even in bed so I don’t have to get up to go change my site). Or he’ll help evaluate and determine that something can wait until a later time to do (e.g. change pump site at another time). Sometimes I get him to open boxes for me and we re-organize how my supplies are to make them easier to grab and go.

Those are diabetes-specific examples, but I’ve also written about how helpful additional help can be sometimes for EPI too, especially with weighing and estimating macronutrient counts so I can figure out my PERT dosing. Or making food once I’ve decided what I want to eat, again so I can separate deciding what to eat and what the counts/dosing is from the action tasks of preparing or cooking the food.

For celiac, one of the biggest changes that has helped was Scott asking family members to load the “Find Me Gluten Free” app on their phone. That way, if we were going out to eat or finding a takeout option, instead of everyone ALWAYS turning to me and saying “what are the gluten free options?”, they could occasionally also skim the app to see what some of the obvious choices were, so I wasn’t always having to drive the family decision making on where to eat.

If you don’t have a chronic illness (or multiple chronic illnesses), these might not sound like a big deal. If you do (even if you have a different set of chronic disease(s)), maybe you recognize some of this.

There are estimates that people with diabetes make hundreds of decisions and actions a day for managing living with diabetes. Multiply that times 20 years. Ditto for celiac, for identifying and preparing and guarding against cross-contamination of said gluten-free food – multiply that work every day times 14 years. And now a year’s worth of *every* time I consider eating anything to estimate (with reading nutrition labels or calculating combinations based on food labels or weighing and googling and estimating compared to other nutrition labels) how much enzymes to take and remembering to swallow the right number of pills at the optimal times. Plus the moral and financial weight of deciding how to balance efficacy with cost of these enzymes. Plus several months now of an additional life-critical medication.

It’s so much work.

It’s easy to get outright burnt out, and common to start to feel a little “crispy” around the edges at times.

If you find yourself in this position, know that it’s normal.

You’re doing a lot, and you’re doing a great job to keep yourself alive.

You can’t do 110% all the time, though, so it is ok to figure out what is the bare minimum and some days throughout the year, just do that, so you can go back to 110%-ing it (or 100%-ing) the other days.

With practice, you will increasingly be able to spot patterns of scenarios or times of the year when you typically get crispy, and maybe you can eventually figure out strategies to adapt in advance (see me over here pre-filling reservoirs ahead of Thanksgiving last week and planning when I’d change my pump site and planning exactly what I would eat for 3 days).

TLDR:

  • Living with chronic disease is hard. And the more diseases you have, the harder it can be.
  • If you live with or love someone with chronic disease(s), ask them if you can help. If they’re venting, ask if they want you to listen (valuable!) or to let you know if at any point they want help brainstorming or for you to provide suggestions (helpful *if* desired and requested).
  • If you’re the one living with chronic disease(s), consider asking for help, even with small things. Don’t let your own judgment (“I should be able to do this!”) get in your way of asking for help. Try it for a day or for a weekend.
Dealing with and avoiding chronic disease burnout by Dana M. Lewis

Modifying Thanksgiving and Other Holiday Meals With Exocrine Pancreatic Insufficiency (and Celiac)

by Dana Lewis

In the last few years, I’ve had the opportunity (or challenge) of re-thinking how I do holiday food traditions. For the last 13+ years I’ve figured out how to do everything gluten free (because I have celiac). I had that figured out pretty well. But more recently, when I was eliminating onion and garlic and trying low FODMAP last year, it was a lot harder. Instead of modifying what I usually did, I essentially started from a blank page in figuring out what I *could* eat and then what I wanted to eat.

Thankfully, this year I have many more options. Since I realized it was exocrine pancreatic insufficiency (EPI) that was causing my GI issues, I am back to being able to eat whatever (gluten free) that I want. It’s a lot easier. But it’s still different this year than years prior, because I need to generally estimate how many grams of fat and protein in what I am eating in order to determine how much pancreatic enzyme replacement therapy (PERT) that I need to take to “cover” the meal so I can digest it.

Usually at Thanksgiving, we do a family-style meal. (With a group of family that is COVID-boosted and everyone does a rapid test before they come.) We all help make food and set it out on a table, and people pass it around and serve themselves. In the past, I’ve had a few gluten free specific dishes that just sat in front of my plate, and I served from those and took other naturally GF options (like sweet potatoes, green beans, etc) as they were passed around.

This year, I wasn’t sure how I wanted to handle it. I’m still not great at guesstimating the amount of fat and protein in food the way I am with carb estimates (for which I have 20 years of practice!). I knew I would want to weigh some of the food to help estimate it (turkey, stuffing, etc that are likely to be higher fat and/or protein quantities) whereas others like sweet potatoes were something I generally have estimated well.

But would I bring my scale to the table and pick up my plate and weigh it with each portion I served? That seemed like it might draw attention to me and generally reduce the joy of the meal for me. I could fill my plate then go back to the kitchen with it and weigh it; but that also felt like it would steal some of my joy from the experience of sitting down and eating with everybody.

Instead, I decided that I would dish up my plate in the kitchen, where I could weigh things and then pop them onto my plate, then take my plate out and have it ready to go (all estimated and pre-decided with how much PERT I needed to take) when everyone else was ready to eat.

That also inspired some flexibility in the choices of what I was eating, too. Instead of cooking a small, separate gluten free turkey (from which there were usually too many leftovers), I decided instead to go with a pre-made meal that is turkey, mashed potatoes, gravy, and a side of green beans. “Pre-made” may sound gross, but there’s a brand that does mail-order ready-made gluten free meals that are refrigerated and you only have to microwave them. And I happen to really like their turkey dinner one. So this year I decided to get several of those turkey meals, so that my turkey, mashed potatoes, and gravy were already pre-portioned and I can happily use the nutrition counts on the package. That’s the majority of what I was stressing about measuring/estimating! So that takes out a) a lot of work of making a separate GF turkey and b) makes it easier because I already have counts for the biggest portions of my plate.

I will still make a box of gluten free stuffing, but that’s essentially only one thing for which I’ll need to use the scale to estimate the serving size and nutrition counts. Otherwise, I’ll microwave my turkey meal, put it on my nice plate, add my portion of stuffing, and be able to take it to the table and eat just like everyone else.

I’ve also worked to take the guesswork and stress out of dessert, too.

I realized a few years ago that no one was eating any of the GF desserts I brought, even when I would specially hand-make gluten free pumpkins pies. In part because no one wanted to “take” my food (even if I offered it to them); but there’s also a bias that GF stuff is less good (which is sometimes true) and there’s a gluten-y option so why not just eat that? But I realized that I miss the joy of being able to pick from 2-3 dessert options just like everyone else. So instead of making or bringing one big GF pie and having a slice and having way too many leftovers, I’d just as soon get a frozen miniature gluten free pumpkin pie. And last year, I decided to get *two* miniature pies – for options! Then I could be like everyone else and decide on a whim whether I felt like pumpkin pie or a different flavor of pie. So that’s what I’m doing this year, too. I got 3 miniature pies – pumpkin, lemon, and apple. Yum!

The other thing this thought exercise has brought is the realization that if I’m making/preparing/bringing all my own food, I don’t have to limit myself to just eating it on Thanksgiving. This way I’ll get to have more moderate portions multiple times, without feeling inclined to overeat at the main Thanksgiving meal – because my meal can be repeated multiple times throughout the week, complete with a selection of tasty GF pie options.

I spent part of last week stressed about figuring out what to eat, what the nutrition counts are, etc. But I’ve tried to turn this into an upside, which I think it actually is (given my situation of also having celiac/GF to contend with alongside figuring out EPI).

  • Tips for holidays for those of us with chronic illnesses

This also reminded me how helpful I find it to separate the stressful decision making (what am I going to eat) and the math (what are the counts; how many enzymes does this mean I need?) from the act of making and consuming the food. All together, those can feel stressful and overwhelming (especially if I’m already stressed and overwhelmed about anything else). Separating those actions takes the time pressure off.

If you’re dealing with food allergies or food limitations or needing to dose medication (like enzymes) for your food, this is one way that I deal with reducing stress: planning ahead as much as possible and having as much done in advance as possible.

I also do this for diabetes when possible, such as when I’m planning for a trip or a holiday week with lots of busy activities. I take some time in advance and set out needed supplies for a pump site change; I also pre-fill two or three reservoirs with insulin, so instead of having to do a reservoir AND change my site, I’ve done half the work and reduced the friction. With the reservoir set up ready to go and the pump site sitting on my bathroom counter, it makes it feel easier to change my pump site (even though it’s not that much more work, it feels like I’ve made the amount of time and hassle it takes a lot more doable).

  • Remember that you can ask for help

The final thing that I did to reduce stress was to ask for help. I told Scott (my husband) what I was stressing about. He asked how he could help, and mainly that was discussing my options and what I wanted to possibly eat and discussing the different options from bringing the scale to the table vs plating my food in the kitchen all the way to making different food (which I ultimately chose).

I also assigned him a task to help me do my nutrition estimates. One of the frozen GF individual-sized pies I bought is from an amazing GF bakery in Western Washington, but because they’re a small bakery their items don’t have nutrition counts. As he’s done in the past, I told him I want help a) weighing the pie and b) looking up GF apple pies to get a general ballpark nutrition estimate. We’d then use the weight of my actual pie to create an estimated count based off of similar GF apple pies with nutrition counts. It’s not perfect, but it’s better than my wild guessing.

And, having him help makes it feel more manageable overall, because I’m not doing it “all” by myself.

You don’t have to do it by yourself all the time. No, no one can swallow your enzyme pills for you, but the people in your life can help you look up nutrition information or find safe places for you to eat or find safe options that you can eat. Sometimes you need to ask for them to help, because people don’t always know that they can help. And be clear with them, whether you’re just venting and want a listening ear (valuable!) or whether you’re looking for brainstorming ideas and solutions for a particular thing – which can also be super helpful. But remember to ask. Don’t keep it all to yourself; you are loved and people want to help but they may not know how to help.

You’ll notice that the title of this blog post was about modifying things…but I didn’t modify my food choices at all in the sense of “reducing” my food as one might infer from traditional thinking about meal modifications. I’m not eating fewer grams of fat because I have exocrine pancreatic insufficiency. Medically, in general, it’s no longer recommended for people with EPI to consume lower fat diets than the general population. Instead, we dose enzymes to match the amount of fat (and protein and carbs) that we are eating. It’s similar to type 1 diabetes and insulin. Before insulin was discovered, people were on the starvation diet (to prolong dying); but once insulin was discovered we have been able to eat the same diet as other people, as long as we cover what we are eating with insulin. Individually, you may CHOOSE a different, specific diet approach that works for you; but medically, it’s not necessary to modify things in general based on EPI or type 1 diabetes. The biggest/primary modifications I make are to not eat gluten, because I have celiac disease. Otherwise, I estimate the carbs (to tell my open source automated insulin delivery system that I’m eating) and fat and protein (to calculate how many enzymes I should be taking for EPI) in what I’m eating and carry on, just like everyone else.

Modifying holiday meals with exocrine pancreatic insufficiency and a few tips for reducing stress at the holidays with chronic illnesses in general

Costs, Price and Calculations for Living With Diabetes and Exocrine Pancreatic Insufficiency and Celiac and Graves

by Dana Lewis

Living with diabetes is expensive. However, the cost and price goes beyond the cost of insulin, which you may have heard about lately. In addition to insulin, you need tools and supplies to inject the insulin (e.g. syringes, insulin pens, or an insulin pump). Depending on those methods, you need additional supplies (e.g. pen needles for insulin pens, reservoirs and infusion sets for insulin pumps). You also need blood glucose monitoring supplies, whether that is meter and up to a dozen glucose test strips a day and/or a continuous glucose monitor which is made up of a disposable sensor and a reusable transmitter.

All those costs add up on a daily basis for people living with diabetes, even if you have health insurance.

Understanding the costs of living with chronic illness with health insurance in the US

Every year in the US we have “open enrollment” time when we opt-in or enroll into our choice of health insurance plan for the following year. I am lucky and have access to insurance through my husband’s employer, who covers part of the cost for him and me (as a spouse). We have a high-deductible (HSA-qualified) health plan, so our deductible (the amount we must pay before insurance begins to pay for a portion of the costs) is usually around $1,500-$2,500 USD for me. After that, I might pay either a fixed copay ($10 or $25 or similar) for a doctor’s visit, or a percentage (10% or 20%) while the insurance covers the rest of the cost. Then there is a fixed “out of pocket (OOP) max” cost for the year, which might be something like $3,000 USD total. Sometimes the OOP max is pretty close to the deductible, because we typically choose the ‘high deductible’ plan (with no monthly cost for the insurance plan) over a plan where we have a lower deductible but pay a monthly premium for the insurance.

That’s a very rough summary of how I see my health insurance. Everyone has different health insurers (the company providing the insurance) and different plans (the costs will be different based on whether it’s through a different employer or if it’s an individual plan).

So the costs to people with diabetes can vary quite a bit in the US, depending on whether you have insurance: there is variation in the monthly cost of the plan, the amount of the deductible, and the amount of the out of pocket max.

In order to choose my plan for the following year, I look at the total cost for the year of my health supplies and health care, then look at the plans. Usually, the high deductible plan “feels” more expensive because I might have to reach $2,500 before insurance kicks in; however, the out of pocket cap may only be $500 beyond that, so that I’m going to pay a maximum of $3,000 for the year in insurance-covered costs*. There are other types of plans that are lower deductible, such as insurance kicking in after a $250 deductible. That sounds better, right? Well, those plans come with a monthly cost (premium) of $250. So you need to factor that in ($250×12=$3,000) alongside the deductible and any costs up to the out of pocket max ($2,500). From this, you’d pay the $3,000 total yearly premium plus up to $2,500 OOP, or $5,500. Thus, even though it has a lower deductible and OOP, you’re in total paying much more ($5,500 vs $3,000) if you’re someone like me.

Why? Because I have >$3,000 of health supply costs every year.

This is why every few years (mostly after I forget what I learned the last time), I do the math on how much my supply costs to see if I’m still making the most cost-effective choices for me with my insurance plans.

I wanted to share this math methodology below, also because this year I have new variables, which are two new chronic diseases (exocrine pancreatic insufficiency and Graves) that add additional costs and healthcare needs and require me to want to re-check my math.

* Clarifying that previously and most years I pay out of pocket for minor, relatively low-cost health supplies like vitamins or tape to cover my CGM that I buy and do not get through insurance coverage, so my total costs are usually over that OOP max, but likely not by more than a few hundred dollars.

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Note: Do not attempt to use this as an absolute cost of diabetes for anyone else. These numbers are based on my use cases in terms of volume of insulin, insurance coverage, etc. Ditto for trying to use the costs for EPI. Where relevant below, I provide rough estimates of my methodology so that another individual with diabetes or EPI/PEI could use similar methods to calculate their own rough costs, if they wished. However, this cannot be used to determine any average cost to people with diabetes more broadly, so don’t excerpt or cite this in those ways. This is purely n=1 math with conclusions that are unique to this n=1 (aka me) but with methods that can be extended for others.

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I’ll cover my estimates for costs of diabetes, celiac, exocrine pancreatic insufficiency (EPI or PEI), and Graves’ disease below. This doesn’t account for visits (e.g. doctor’s appointments), lab tests, or other health costs such as x-rays for breaking bones, because those vary quite a bit year to year and aren’t guaranteed fixed costs. But the supplies I need for diabetes, EPI, etc are fixed costs, which I use to anchor my math. Given that they end up well above my OOP max, the then-variable amount of other costs (doctor’s appointments, lab work, etc) is minor in comparison and irrelevant regardless of how much it varies year to year.

The costs (for me) of daily living with diabetes

(You read the caveat note above, right? This is my math based on my volume of insulin, food intake, personal insulin sensitivity, etc. Lots of variables, all unique to me.)

To calculate the yearly costs of living with diabetes, I make a list of my diabetes supplies.

Primarily for me, those are:

  • Insulin
  • CGM sensors
  • CGM transmitter
  • Pump sites
  • Reservoirs

(Not included: meter/test strips or the cost of a pump or the cost of any hardware I’m using for my open source automated insulin delivery. I’ve not bought a new in-warranty pump in years, and that alone takes care of the OOP max on my insurance plan if I were to buy a pump that year. Anyway, the above list is really my recurring regular costs, but if you were purchasing a pump or on a subscription plan for a pump, you’d calculate that in as well).

First, I calculate the daily cost of insulin. I take the cost of a vial of my insulin and divide it by 1,000, because that’s how many units a vial of insulin has. Then I multiply that by the average number of units I use per day to get the cost per day of insulin, which for me is $4.36. (The yearly cost of insulin would be $1,592.)

Then, I calculate my CGM sensors. I take the total cost for a 3 month order of sensors and divide by the number of sensors; then divide by 10 days (because a sensor lasts about 10 days) to get the cost per day of a CGM sensor: about $11 per day. But, you also have to add in the cost of the re-usable transmitter. Again, factor the cost of a transmitter over the number of days it covers; for me it’s about $2 per day. In total, the cost per day of CGM is about $13 and the yearly cost of CGM is roughly $4,765.

Next is pump sites and reservoirs. You need both to go with your insulin pump: the pump site is the catheter site into your body and the tubing (this cumulatively gets replaced every few days), and the reservoir is disposable and is filled with insulin. The cost per day of pump sites and reservoirs is about $6 ($4.67 for a pump site and $1.17 for a reservoir) and the yearly cost of pump sites and reservoirs is $2,129.

If you add up these supplies (pump sites and reservoirs, CGM sensor and transmitter, insulin), the daily cost of diabetes for me is about $23. The yearly cost of diabetes for me is $8,486.

Give that $8,486 is well over the out of pocket max cost of $3,000, you can see why that for diabetes alone there is reason to pick the high deductible plan and pay a max of $3,000 for these supplies out of pocket.

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The daily and yearly costs of living with celiac disease

But I don’t just have type 1 diabetes, so the above are not my only health supply costs.

I also have celiac disease. The treatment is a 100% gluten free diet, and eating gluten free is notoriously more expensive than the standard cost of food, whether that is groceries or eating out.

However, the cost of gluten free food isn’t covered by health insurance, so that doesn’t go in my cost calculation toward pricing the best insurance plan. Yet, it does go into my “how much does it cost every day from my health conditions” mental calculation.

I recently looked at a blog post that summarized the cost of gluten free groceries by state compared to low/medium/high grocery costs for the average person. By extrapolating my state’s numbers from a high-cost grocery budget, plus adding $5 each for eating out twice a week (typically gluten free food has at least a $2-3 surcharge in addition to being at higher cost restaurants, plus the fact that I can’t go eat at most drive-throughs, which is why I use $5/meal to offset the combined cost of the actual surcharge plus my actual options being more expensive).

I ended up estimating about a $3 daily average higher cost of being gluten free, or $1,100 per year cost of eating gluten free for celiac.

That’s probably an underestimate for me, but to give a ballpark, that’s another $1,000 or more I’m paying out of pocket in addition to healthcare costs through insurance.

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The daily and yearly cost of living with exocrine pancreatic insufficiency and the daily and yearly cost of pancreatic enzyme replacement therapy

I spent a pleasant (so to speak) dozen or so years when “all” I had to pay for was diabetes supplies and gluten free food. However, in 2022, I was diagnosed with exocrine pancreatic insufficiency (and more recently also Graves’ disease, more on that cost below) and because I have spent ~20 years paying for diabetes, I wasn’t super surprised at the costs of EPI/PEI. However, most people get extreme sticker shock (so to speak) when they learn about the costs of pancreatic enzyme replacement therapy (PERT).

In summary, since most people don’t know about it: exocrine pancreatic insufficiency occurs for a variety of reasons, but is highly correlated with all types of diabetes, celiac, and other pancreatic conditions. When you have EPI, you need to take enzymes every time you eat food to help your body digest fat, protein, and carbohydrates, because in EPI your pancreas is not producing enough enzymes to successfully break down the food on its own. (Read a lot more about EPI here.)

Like diabetes, where different people may use very different amounts of insulin, in EPI people may need very different amounts of enzymes. This, like insulin, can be influenced by their body’s makeup, and also by the composition of what they are eating.

I use PERT (pancreatic enzyme replacement therapy) to also describe the prescription enzyme pills used for EPI. There are 6 different brands approved by the FDA in the US. They also come in different sizes; e.g. Brand A has 3,000, 6,000, 12,000, 24,000, 36,000 size pills. Those size refer to the units of lipase. Brand B has 3,000, 5,000, 10,000, 15,000, 20,000, 25,000, 40,000. Brands C, D, E and F have similar variety of sizes. The point is that when people compare amounts of enzymes you need to take into account 1) how many pills are they taking and 2) how much lipase (and protease and amylase) each of those pills are.

There is no generic for PERT. PERT is made from ground up pig pancreas. It’s expensive.

There are over the counter (OTC) enzymes made from alternative (plant etc) sources. However, there are ZERO studies looking at safety and efficacy of them. They typically contain much less lipase per pill; for example, one OTC brand pill contains 4,000 units of lipase per pill, or another contains 17,500 units of lipase per pill.

You also need to factor in the reliability of these non-approved pills. The quality of production can vary drastically. I had one bottle of OTC pills that was fine; then the next bottle of OTC pills I started to find empty capsules and eventually dumped them all out of the bottle and actually used a colander to filter out all of the enzyme powder from the broken capsules. There were more than 30 dud pill capsules that I found in that batch; in a bottle of 250 that means around 12% of them were unusable. That makes the reliability of the other ones suspect as well.

A pile of powder in the sink next to a colander where a bunch of pills sit. The colander was used to filter out the loose powder. On the right of the image is a baggie with empty pill capsules, illustrating where this loose powder came from. This shows the unreliability of over the counter (OTC) enzymes.

If the reliability of these pills even making it to you without breaking can be sketchy, then you need to assume that the counts of how much lipase (and protease and amylase) may not be precisely what the label is reporting. Again, there have been no tests for efficacy of these pills, so anyone with EPI or PEI needs to use these carefully and be aware of these limitations.

This unreliability isn’t necessarily true of all brands, however, or all types of OTC enzymes. That was a common brand of pancrelipase (aka contains lipase, protease, and amylase). I’ve had more success with the reliability of a lipase-only pill that contains about 6,000 units of lipase. However, it’s more expensive per pill (and doesn’t contain any of the other enzymes). I’ve used it to “top off” a meal with my prescription PERT when my meal contains a little bit more fat than what one PERT pill would “cover” on its own.

This combination of OTC and prescription PERT is where the math starts to get complicated for determining the daily cost and yearly cost of pancreatic enzyme replacement therapy.

Let’s say that I take 6-8 prescription PERT pills every day to cover what I eat. It varies because I don’t always eat the same type or amount of food; I adjust based on what I am eating.

The cost with my insurance and a 90 day supply is $8.34 for one PERT pill.

Depending on whether I am eating less fat and protein on a particular day and only need 6 PERT, the cost per day of enzymes for EPI might be $50.04, whereas if I eat a little more and need 8 PERT, the cost per day of enzymes for EPI could be up to $66.72.

The costs per year of PERT for EPI then would range from $18,000 (~6 per day) to $24,000 (~8 per day).

Please let that sink in.

Eighteen to twenty four thousand dollars to be able to successfully digest my food for a single year, not taking into account the cost of food itself or anything else.

(See why people new to EPI get sticker shock?!)

Even though I’m used to ‘high’ healthcare costs (see above estimates of $8,000 or more per year of diabetes costs), this is a lot of money. Knowing every time that I eat it “costs” at least one $8.34 pill is stressful. Eating a bigger portion of food and needing two or three pills? It really takes a mental toll in addition to a financial cost to think about your meal costing $25.02 (for 3 pills) on top of the cost of the food itself.

This is why OTC pills are interesting, because they are drastically differently priced. The 4,000 unit of lipase multi-enzyme pill that I described costs $0.09 per pill, which is about $0.02 per 1000 units of lipase. Compared to my prescription PERT which is $0.33 per 1000 units of lipase, it’s a lot cheaper.

But again, check out those pictures above of the 4,000 units of lipase OTC pills. Can you rely on those?

Not in the same way you can with the prescription PERT.

In the course of taking 1,254 prescription PERT pills this year (so far), I have not had a single issue with one of those pills. So in part the high cost is to ensure the safety and efficacy. Compare that to 12% (or more) of the OTC pills being complete duds (empty pill capsules that have emptied their powder into the bottle) and some % of unreliability even with a not-broken capsule.

Therefore it’s not feasible to me to completely replace prescription PERT with OTC pills, although it’s tempting purely on price.

I previously wrote at a high level about the cost calculations of PERT, but given my desire to look at the annual cost for estimating my insurance plan (plus many more months of data), I went deeper into the math.

I need to take anywhere from 2-6 OTC pills (depending on the brand and size) to “match” the size of one PERT. I found a new type (to me) of OTC pills that are more units of lipase (so I need 2 to match one PERT) instead of the two other kinds (which took either 4 or 6 to match one PERT), which would enable me to cut down on the number of pills swallowed.

The number of pills swallowed matters.

So far (as of mid-November, after starting PERT in early January), I have swallowed at least 1,254 prescription PERT enzyme pills. I don’t have as much precision of numbers on my OTC pills because I don’t always log them (there’s probably a few dozen I haven’t written down, but I probably have logged 95% of them in my enzyme tracking spreadsheet that I use to help calculate the amount needed for each meal/snack and also to look at trends.), but it’s about 2,100 OTC enzyme pills swallowed.

This means cumulatively this year (which is not over), I have swallowed over 3,300 enzyme pills. That’s about 10 enzyme pills swallowed every day!

That’s a lot of swallowing.

That’s why switching to a brand that is more units of lipase per pill, where 2 of these new OTC kind matches one PERT instead of 4-6, is also significant. While it is also slightly cheaper than the combination of the two I was using previously (a lipase-only and a multi-enzyme version), it is fewer pills to achieve the same amount.

If I had taken prescription PERT instead of the OTCs, it would have saved me over 1,600 pills to swallow so far this year.

You might be thinking: take the prescription PERT! Don’t worry about the OTC pills! OMG that’s a lot of pills.

(OMG, it *is* a lot of pills: I think that as well now that I’m adding up all of these numbers.)

Thankfully, so far I am not having issues with swallowing these pills. As I get older, that might change and be a bigger factor in determining my strategy for how I dose enzymes; but right now, that’s not the biggest factor. Instead, I’m looking at efficacy (getting the right amount of enzymes to match my food), the cost (in terms of price), and then optimizing and reducing the total number of pills if I can. But the price is such a big variable that it is playing the largest role in determining my strategy.

How should we collectively pay for this?

You see, I don’t have EPI in a vacuum.

As I described at the top of the post, I already have $8,000+ of yearly diabetes costs. The $18,000 (or $24,000 or more) yearly enzyme costs are a lot. Cumulatively, just these two alone mean my supply costs are $26-32,000 (or more), excluding other healthcare costs. Thankfully, I do have insurance to cover costs after I hit my out of pocket max, but the bigger question is: who should be paying for this?

If my insurer pays more, then the employer pays more, which means employees get worse coverage on our pooled insurance plan. Premiums go up and/or the plans cover less, and the out of pocket costs to everyone goes up.

So while it is tempting to try to “stuff” all of my supply needs into insurance-covered supplies, in order to reduce my personal out of pocket costs in the short run, that raises costs for everyone in the long run.

This year, for all of those (remember I estimated 2,100 OTC pills swallowed to date) OTC pills I bought, it cost me $515. Out of pocket. Not billed through insurance; they know nothing about it.

It feels like a lot of money. However, if you calculate how many PERT it replaced and the cost per PERT pill, I saved $4,036 by swallowing 1,652 extra pills.

Is paying $500 to save everyone else $4000 worth it?

I think so.

Again, the “price” question gets interesting.

The raw costs of yearly supplies I don’t pay completely; remember with health insurance I am capped at $3,000 out of pocket for supplies I get through insurance. However, again, it’s worth considering that additional costs do not cost me but they cost the insurer, and therefore the employer and our pool of people in this insurance plan and influences future costs for everyone on insurance. So if I can afford (although I don’t like it) $500-ish out of pocket and save everyone $4,000 – that’s worth doing.

Although, I think I can improve on that math for next year.

I was taking the two OTC kinds that I had mentioned: one that was lipase-only and very reliable, but $0.28/pill or $0.04 per 1000 units of lipase (and contains ~6000 units of lipase). The less reliable multi-enzyme pill was cheaper ($.09) per pill but only contains 4000 units of lipase, and was $.02 per 1000 units of lipase. That doesn’t factor in the duds and the way I had to increase the number of pills to account for the lack of faith I had in the 4000 units of lipase always being 4000 units of lipase.

The new OTC pill I mentioned above is $0.39 per pill, which is fairly equivalent price to a combined lipase-only and multi-enzyme pill. In fact, I often would take 1+1 for snacks that had a few grams of protein and more than a few grams of lipase. So one new pill will cover 17,000 units of lipase (instead of 10,000, made up of 6000+4000) at a similar cost: $0.39 instead of $0.36 (for the two combined). And, it also has a LOT more protease per pill, too. It has >2x the amount of protease as the multi-enzyme OTC pill, and is very similar to the amount of protease in my prescription PERT! I’ve mostly discussed the math by units of lipase, but I also dose based on how much protein I’m eating (thus, protease to cover protein the way lipase covers fat digestion), so this is also a benefit. As a result, two of the new OTC pill now more than match 1 PERT on lipase, double the protease to 1 PERT, and is only two swallows instead of the 4-6 swallows needed with the previous combination of OTCs.

I have only tested for a few days, but so far this new OTC is working fairly well as a substitute for my previous two OTC kinds.

Given the unreliability of OTCs, even with different brands that are more reliable than the above picture, I still want to consume one prescription PERT to “anchor” my main meals. I can then “top off” with some of the new OTC pills, which is lower price than more PERT but has the tradeoff cost of slightly less reliability compared to PERT.

So with 3 main meals, that means at least 3 PERT per day ($8.34 per pill) at $25.02 per day in prescription PERT costs and $9,132 per year in prescription PERT costs. Then to cover the additional 3-5 PERT pills I would otherwise need, assuming 2 of the new OTC covers 1 PERT pills, that is 6-10 OTC pills.

Combined, 3 PERT + 6 OTC pills or 3 PERT + 10 OTC pills would be $27.36 or $28.92 per day, or $9,986 or $10,556 per year.

Still quite a bit of money, but compared to 6-8 PERT per day (yearly cost $18,264 to $24,352), it saves somewhere between $7,708 per year (comparing 6 PERT to 3 PERT + 6 OTC pills per day) all the way up to $14,366 per year (comparing 8 PERT to 3 PERT +10 OTC pills per day).

And coming back to number of pills swallowed, 6 PERT per day would be 2,190 swallows per year; 8 PERT pills per day is 2,920 swallows per year; 3 PERT + 6 OTC is 9 pills per day which is 3,285 swallows per year; and 3 PERT + 10 OTC is 13 swallows per day which is 4,745 swallows per year.

That is 1,095 more swallows per year (3PERT+6 OTC vs 6 PERT) or 1,825 more swallows per year (3 PERT + 10 OTC vs 8 PERT).

Given that I estimated I swallowed ~10 enzyme pills per day this year so far, the estimated range of 9-13 swallows with the combination of PERT and OTC pills (either 3 PERT + (6 or 10) OTC) for next year seems reasonable.

Again, in future this might change if I begin to have issues swallowing for whatever reason, but in my current state it seems doable.

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The daily and annual costs of thyroid treatment for Graves’ Disease

No, we’re still not done yet with annual health cost math. I also developed Graves’ disease with subclinical hyperthyroidism this year, putting me to a grand total of 4 chronic health conditions.

Luckily, though, the 4th time was the charm and I finally have a cheap(er) one!

My thyroid med DOES have a generic. It’s cheap: $11.75 for 3 months of a once-daily pill! Woohoo! That means $0.13 per day cost of thyroid treatment and $48 per year cost of thyroid treatment.

(Isn’t it nice to have cheap, easy math about at least one of 4 things? I think so!)

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Adding up all the costs of diabetes, celiac disease, exocrine pancreatic insufficiency and Graves’ Disease

High five if you’ve read this entire post; and no problem if you skimmed the sections you didn’t care about.

Adding it all up, my personal costs are:

  • Diabetes: $23.25 per day; $8,486 per year
  • Celiac: $3 per day; $1,100 per year (all out of pocket)
  • Exocrine Pancreatic Insufficiency:
    • Anywhere from $50.04 up to $66.72 per day with just prescription PERT pills; $18,265 (6 per day) to $24,353 (8 per day) per year
    • With a mix of prescription and OTC pills, $27.36 to $28.92 per day; $9,986 to $10,556 per year.
    • Of this, the out of pocket cost for me would be $2.34 to $3.90 per day; or $854 up to $1,424 per year.
  • Thyroid/Graves: $0.13 per day; $48 per year

Total yearly cost:

  • $27,893 (where EPI costs are 6 prescription PERT per day); 2,190 swallows
  • $33,982 (where EPI costs are 8 prescription PERT per day); 2,920 swallows
  • $19,615 (where EPI costs are 3 prescription PERT and 6 OTC per day); 3,285 swallows
  • $20,185 (where EPI costs are 3 prescription PERT and 9 OTC per day); 4,745 swallows

* My out of pocket costs per year are $854-$1424 for EPI when using OTCs to supplement prescription PERT and an estimated $1,100 for celiac-related gluten free food costs. 

** Daily cost-wise, that means $76.42, $93.10, $53.74, or $55.30 daily costs respectively.

*** The swallow “cost” is 1,095-1,825 more swallows per year to get the lower price cost of enzymes by combining prescription and OTC.

Combining these out of pocket costs with my $3,000 out of pocket max on my insurance plan, I can expect that I will therefore pay around $4,900 to $5,600 next year in health supply costs, plus another few hundred for things like tape or vitamins etc. that aren’t major expenses.

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TLDR: 

  • Diabetes is expensive, and it’s not just insulin.
    • Insulin is roughly 19% of my daily cost of diabetes supplies. CGM is currently 56% of my diabetes supply costs.
  • EPI is super expensive.
    • OTC pills can supplement prescription PERT but have reliability issues.
    • However, combined with prescription PERT it can help drastically cut the price of EPI.
    • The cost of this price reduction is significantly more pills to swallow on a daily basis, and adds an additional out of pocket cost that insurance doesn’t cover.
    • However in my case; I am privileged enough to afford this cost and choose this over increasing everyone in my insurance plan’s costs.
  • Celiac is expensive and mostly an out of pocket cost.
  • Thyroid is not as expensive to manage with daily medication. Yay for one of four being reasonably priced!

REMEMBER to not use these numbers or math out of context and apply them to any other person; this is based on my usage of insulin, enzymes, etc as well as my insurance plan’s costs.

Yearly costs, prices, and calculations of living with 4 chronic diseases (type 1 diabetes, celiac, Graves, and exocrine pancreatic insufficiency)