I’m currently a senior in college and was diagnosed with colitis about a year and a half ago. I’m pretty active and I like to compete in mud runs (Tough Mudders, Spartan Races, etc.). It’s hard to do a run when you’re squirting all the time.
Sam’s Colitis Story:
When I first noticed blood in my stool about a year and a half ago, I went to my primary care physician who referred me to a GI doc. At this point it was only a small amount of blood and not always diarrhea. I had a colonoscopy and it revealed that I had mild to severe colitis. After a few weeks I was squirting about 6 times a day, with a high around 12. At first, I was put on Lialda (4 pills a day), but it did nothing. I was running to class in the morning just to make it to the bathroom (Third floor because no one ever used those bathrooms). Usually I was unsuccessful. Next, my GI doc suggested prednisone, and that worked for about a month. It took about six months of me trying to make it to the bathroom before it was suggested that I try Remicade. I was never good with needles or anything to do with blood, but this seemed like my only option. After the first day, I saw results almost immediately. By the end of the first week I was back to normal! The worst part about the Remicade was having to sit in a fairly small room with people three times my age watching Regis and Kelly, Rachael Ray and The View… Anyway, I started to do more research about colitis and decided I wanted to get off of Remicade. Around this time I also stopped taking Lialda because I felt it was doing nothing. Without consulting my doctor (because I knew he would be against my decision) I decided to stop after the third infusion. Instead of the Remicade, I found a nutritionist to try a different route. He suggested that I try to eat gluten-free for six weeks. That didn’t work. Next, he had me get a food allergy test, which involved taking some blood (once again, I’m not a fan).
The findings were surprising.
I found out I’m allergic to sugar (really?!?!), honey (what?!?), cherries, brown rice, anchovies, cauliflower and a few other things. Finding out this information was horrible. I didn’t realize sugar is in EVERYTHING. And if it’s not sugar (which has a thousand different names on food labels) than it’s honey. (Note: I did notice that after eating a lot of sugar one day before I knew I was allergic, I had the worst flare the following day) I was also eating brown rice at least three times a week.
No wonder I was squirting my brains out.
Now I thought I’d just avoid these foods and I’d be back to normal. Wrong. This was also the time when my girlfriend and I decided to go on vacation in Punta Cana. Fun vacation except for the fact that I crapped my pants twice. Yep, I’ll admit it. It sucked. The only good thing was I was wearing a bathing suit both times and was very close to our room. When I got back from vacation I had to get Remicade again. After a lecture from my doctor about why I should not just stop getting the infusions because I feel like it, I was back on Remicade. Once again I was normal. But the story doesn’t end there. Of course I got some routine blood work done and found out my liver enzyme levels were ridiculously high. Over 500 points (or whatever you call them) for either the ALT or the AST, I forget. Well, back off the Remicade. I just got more blood work done and the levels are down to around 300, which is much better but still not good. My GI doc now wants me back on Lialda and wants to try 6-mp. I’m not too happy about this, but I did “squirt” once today. It appears my colitis is coming back right now since I’m not on any meds. I’m still avoiding the foods that I’m allergic to and just started to avoid grains. I’m basically eating tuna, chicken, salmon, eggs, vegetables, fruit and finely found nuts. Boring. I hope to see if I can stop this flare by eating better before I try the 6-mp, but we’ll see how that goes. I’ll update if I have any success with my diet or the medicine.
Was on Remicade until it started messing with my liver enzymes. That worked great though. About to go on Lialda again and 6-mp.
Written by Sam
Submitted in the Colitis Venting Area