Experiments In Treating My Crohn's Disease

So about four years ago I was diagnosed with Crohn’s disease, which is extremely painful, very embarrassing and most important considered incurable disease. It’s essentially a chronic inflammation of the digestive tract in different places.

I was diagnosed with sever Crohn’s it was spread throughout my large and small intestines and parts of my stomach. There was like I said enormous amounts of pain, many many trips to the bathroom every day and a whole host of other problems that were associated with it.

I was quickly put on medicines and more and more medicines until I got to about 16 a day including a form of chemotherapy which had me thrown up every day for six months and my hair was thinning from that.

For that I took alopecia which killed my libido and made me really emotional to the point where I would cry at commercials with babies in them. it was a bad time in my life. So I was also right at the beginning with starting a relationship with my now wife, but not a good thing to start a relationship when you’re in that situation.

So after one particularly horrible night in the hospital where I literally thought I was going to die. I had an epiphany and my doctor had done what he could and medicine had done what they could and I had to do something for myself.

So there was a placard in the hospital room and if you’ve been in a hospital you’ve probably seen it and it says, how bad is your pain? And there’s 10 smiley faces to frowny faces, and it’s like no pain is like a really big smile and really really bad pain is you know, and that kind of gave me a small idea of putting a metric to this.

So I started doing a little bit of tracking and I mainly knew I just needed to get myself in better shape and do something different. So I went completely vegetarian for three months just to kind of reboot my body, and I started doing whatever exercises I could think of; I was about 40 pounds heavier that I am now. And just really really unhealthy, just going up a flight of stairs had me winded.

So I set myself a unreasonable goal of doing a triathlon which I have never done before. And in that process of training for it there’s just natural tracking which goes a long with that, which was kind of my real first taste of it, so I had my Garment watch that was doing my mileage and my RPMs on my bike. And I was using Run Keeper on my iPhone to track all of the exercises I was doing and Daily burn for food, and I had the Withing’s scale that was checking my weight and my body fat every day and interacting with my Run Keeper data.

That was just for sport reasons but then I started to realize like oh well there’s these days when I did this many miles and I kind of feel this, and then there were these days when I biked or I swam and I was feeling this.

I kind of realized in the beginning that metrics based on how I was feeling were not really that helpful. I know that there’s services for tracking mood and I kind of dabbled in that but there’s a sort of psychological component to your gut hurting. It kind of just some connection between your head and your gut that’s very strong, and it’s kind of hard to quantify honestly. You know, some days I felt like I was getting shot and other days it wasn’t so bad, but the actual cause of it was not necessarily synchronized with what I was feeling.

So I started tracking everything that I possibly could. There’s certain metrics that you can track with diseases like Crone’s and one of them is C-reactive protein, which is a kind of a general inflammatory marker in your body. If you’re training for a triathlon unfortunately you get inflamed no matter what, so that did not become the most accurate after a while. And the other thing was that I couldn’t go for blood tests every other day.

It was helpful though, because I started experimenting with all sorts of different supplements and I didn’t run into any real horrible snags, but there were times when things just didn’t work and kind of made me feel sick. So I discovered some amazing supplements like Krill oil, which is 34 times more effective than fish oil. And Amazonian Cat’s Claw, which is anti-inflammatory and a smooth muscle relaxer which is made from the bark of a tree in the Amazon and you can get them from GNC now.

So because I really didn’t feel like feeling and hurting was really a good metric, so I needed to keep finding metrics that I could test for on a regular basis that would make sense. Because I was testing C-reactive protein every three months or two months when I went to see my doctor, so I got into everything I could think of. So genetics with 23andme, which if any of you have used 23andme it’s really good but it doesn’t tell you the whole story just to give you that warning. Actually I’ll explain it really quick.

My wife and I are going to have a baby in January, and 23andme tests for a whole bunch of metrics, and one of the things it tests for is if you are a carrier of cystic fibrosis, which is a big thing you look for when having a baby. 23andme said that I’m not. It turns out that I am. 23andme tests for 24 out of the 1800 or so markers for cystic fibrosis, but there’s a lot more than that. So the doctors have a test for 96, and it turns out I did carry it. My wife doesn’t so it’s fine. 23andme is great, it uses saliva but it doesn’t give you the whole story necessarily.

However it did tell me that I’m susceptible to Crohn’s disease which was nice to hear!

Anyway, so that was one. Duel x-ray absorbchemometry that was a fun one. That basically is like a big x-ray ultra sound machine that kind of tells you, it’s the most accurate way to find out where and what your body gut is. Also it tells you if your bones are degenerating, which Crohn’s disease can do. It can kind of cause osteoporosis symptoms, so that was another one.

Semen analysis was a particularly helpful one. The medicine that I was taking can actually deplete semen and the illness itself can kind of have an effect on that. that was a creepiest experience as I thought it was going to be, and unfortunately when you submit a semen analysis test to insurance they list it as semen anal, so that was awkward but it was a helpful metrics.

The point is I was tracking everything, and there is a lot of web apps and because I was trying to track so many things I was using the iPhone for as much as possible and also web applications, so I mentioned Daily Burn and kind of those basic ones.

I used a Fitbit for a few months to track my activity and also on my sleep. Sleep became a really interesting one to track. I was about to go for the Zeo sleep coach but I just never kind of got to it. There’s an iPhone app, but I can’t remember the name but the Fitbit for sleep tracking was a really interesting one as well. and I found there is a surprisingly large correlation between quality of sleep and how I was feeling that day, which shouldn’t be that surprising but it was for this.

Then as far as advocacy of medicine, so I would basically take like a supplement for a month way above the recommended dosage because I needed to get like a kind of a punch, and then I would go for a test, whether it was the x-ray, or C-reactive protein or semen anal or whatever I needed to do.

In the end I did the triathlon but then I actually ended up going on to do an ironman last July in France. So it was something I never could have done a year earlier or three years earlier because I was just so weak and so sick. And having that constant pain every day really pushed me to keep at it and track all these things that I could.

And in the end it’s an incurable disease but my doctor the last time I saw him he ended up sending me a letter that said we can no longer find any trace of the disease in your system, so I’ve kind of cured myself of Crohn’s disease.