My Battles with Crohn’s Disease
Crohn’s sucks, and I’ve spent half my life battling the disease. It would take most of a year to treat a flare-up that usually ended in surgery. I would be able to get back on my feet just in time to repeat the process. I tried tons of different medication, and had more than 20 surgeries without any resolve.
(I also told my story at Ignite, you can watch it here.)
I was sick of being sick, and I needed to conquer Crohn’s to have a life outside of the hospital. My wife Christina helped me find a smart doctor, and it turns out that not eating the things that piss off my Crohn’s is the easiest way to control it. Avoiding these ~30 ingredients is incredibly more difficult than it needs to be. Food labels suck in general as they’re made to be hard to read, and grinding out the labels to find safe food sucks. Christina, Zach, and I started WazINit to make things a bit easier for people with restricted diets to find something to eat.
Over the past two years I’ve been able to discontinue all my Crohn’s meds by controlling my diet, and very much enjoy life outside the hospital. If you’re battling digestive disease, and want to chat to someone that’s been there, please feel free to reach out to me on Twitter or join us on Slack IBD Chat. Seriously, I’d like to help you avoid the 15+ years of hell I went through, and I’ve gone through pretty much everything with “Crohn’s” in the same sentence (e.g. NG tubes, NPO, 20+ surgeries, fissures, fistulas, abscesses, all versions of CT scans and Bowel Follow-throughs, etc).
All the details…
Crohn’s is a nasty digestive disease that literally feels like that scene from Alien. You know the one, where the alien is frantically trying to burst out of the host’s stomach. I imagine it feels exactly like this, and I would describe the noises coming from my pissed off and inflamed GI tract as even more similar. You could say the stabbing pain feels exactly like tiny sharp teeth and claws, while at the same time the dull ache of a rounded head is constantly applying pressure from inside. As a bonus, this pain would endure for months at a time.
Since I was fifteen, I’ve had a pretty inconvenient cycle of spending 8–10 months of the year dealing with the flare-up and resulting surgeries. A large portion of this time was spent homebound or in hospital. The first year, I actually managed to avoid surgery, until I was diagnosed with “toxic mega colon” (no really, that is the technical term). On occasion I’d be well enough to make it to classes, and later whatever job I had for a few days in the hopes of keeping up with everything. Friends were glad I’m alive, and we made potty jokes. I would manage to get back on my feet just in time for the next flare-up. After missing about 170 days of high school over two years, I actually was able to graduate with my friends by studying in the hospital. Not only that, I graduated with honors and as an Eagle Scout.
To recap, and moving into the next decade or so of the cycle: I had my entire colon removed, started college as an engineering student, had two different kinds of ostomies (yes, there are actually many types), reconstructive surgery, and countless complications and revisions to the reconstructive surgery. My weight would fluctuate around 150 lbs, from my sick and not eating weight of 120 lbs to my steroid induced record, tipping the scales at 270 lbs (for reference I’m 6'4”).
I trained a many many residents, and I’m all for teaching the next generation of physicians. Although, at some point you just want to get better. The arrogant book smart residents annoyed me the most, and seemed to forget that I was 1) human and 2) had more experience with my disease than the chapter they read on it a few months ago. Unfortunately, a lot of them were in it for the money, and the compassionate physicians in training were few and far between. I always found it odd that nurses rarely “advanced” to become physicians. I think caring for patients as a nurse should be a requirement (and good indicator of abilities) in becoming a licensed physician.
I want to say I’ve had between 20–30 surgeries over the past half of my life, and I honestly lost count. At the worst of it I was having surgery about every other month. I came to realize that joking about my “zipper scar” was actually starting to sound like a great idea. Can we just put in an actual zipper?
This is no way to live, or generally exist as a human. New drugs were starting to come out, and I tried them all. Biologics started to work for a bit (and are still crazy expensive with unknown long term side effects), and then I had my first experience with anaphylaxis. That was fun, and thankfully I was getting the infusion under hospital supervision. I managed to stop the IV pump (years of experience with them now), yell for the nurse, and not pass out.
I was really starting to wonder if there was anything else I could do. I read a lot, anything I could get my hands on, articles and journals online while I was stuck in a bed. My favorite was going through the mound of paper that was my own medical chart. Topics ranged from my disease to new tech and physics papers. I watched lots of educational programs (i.e. Discovery, Science, etc.), and cooking shows were a favorite when I couldn’t eat for weeks at a time. My doctors kept throwing the latest pills and injections at me to no avail. My last major Crohn’s surgery in 2011 was botched by a certain “general hospital” in my area, where the residents were left to run amuck without any supervision by licensed physicians. I had a few surgeries in 2012 to clean up their screw up from a foreign body reaction, and that surgeon was surprised I hadn’t gone septic. I’m currently left with a giant hernia, literally the size and shape of a football.
My months of treatment at a time seemed to be “normal”, and people would just expect I was sick and not able to join in any reindeer games. I had tried elimination diets working with a nutritionist, and I didn’t seem to respond one way or the other for each of the two weeks I eliminated something. Everyone became an internet expert making ridiculous recommendations. I heard I had to eat/drink everything from aloe juice to a specific ginger snap cookie, and not to eat anything from tomatoes to gluten (before it was trendy). If it’s one thing I was starting to understand, it’s that everyone’s diet is different, and the cycle continued.
Until about two years ago when my wife, Christina, helped me finally find a physician that had this crazy idea to get me better. Get me better, as in break the cycle, and stop the flare-ups from happening. This was definitely a welcome shift in thinking. He had this outrageous idea: do some blood tests, and eliminate the foods that caused IgG reactions leading to inflammation (similar to IgE inflammation resulting from anaphylaxis type reactions, although a more delayed response). This is a topic of much debate among the “traditional” doctors. However, the founder of modern medicine Hippocrates himself said, “Let food be thy medicine.”
I’m also pretty sure that the Hippocratic oath is not meant to reflect the hypocrisy of modern healthcare.
Now I was skeptical at first because I had tried to eliminate foods before, and was told that two weeks was just not long enough for the body to calm down from inflammation overload. I really didn’t have anything to lose, and the IV Myer’s cocktails really did help me get my energy back along with Vitamin D shots. Turns out I was deficient in a lot of basic human chemistry, and not having a colon anymore can cause a lot of that. Who’d a thunk?
I get my results back from this food test, and find I only have to eliminate about 30 things I eat everyday, for at least the next six months (I’ve since discovered more). I know, right?! Now what do I eat?!
After one last hurrah of pizza, beer, and wings, I spent four hours with my list in the grocery store the next day. I walked out with a box of alternative crackers that were honestly disgusting. Eating out anytime soon was out of the question, and I didn’t understand my new diet enough to explain it to someone else. When I got home, I called my doc, who said he didn’t have anything to help and suggested I call the testing lab. I spent another hour on hold with the lab to find out they didn’t have any resources to help me, and then they wished me the best of luck.
Over a year or so struggling with food labels and doing really great Crohn’s health-wise, I started thinking there should be an easier way. Christina felt the same way, and I met Zach prior to Startup Weekend. All three of us decided to go, and it was obvious when we got there that other people felt the same way.
I pitched WazINit at Startup Weekend, because I always have to ask, “What’s in it?” before I eat it. We had tons of crowd votes and ended up with the largest team there. We received positive feedback from both millennials and boomers we talked to in grocery stores, all concerned about what we’re putting in our bodies. We managed to get a prototype working to demo for the judging panels, and were awarded first place from both.
The three of us have been working to solve a really big headache for a lot of people in the US. So, here we are today, trying to make it easier for people with restricted diets to find something safe to eat. We’ve been pretty scrappy so far, and have our doctors help us along the way.
I’m coming up on being in Crohn’s remission for three years (a new record for me) and just passed the two year mark of being Crohn’s med free. It is literally me getting my life back (not figuratively). At best, I will have at least two more surgeries, and zero more flare-ups.
So far so good.