Colitis Will Not Win… I Hope

Sam and His Colitis Story

Sam

Introduction:

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.
Colitis Medications:
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



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7 Responses to Colitis Will Not Win… I Hope

  1. Blake December 13, 2011 at 12:11 am #

    Hey Sam. I’m Blake, 30 year old father and husband and athlete, I had the very same problems as you. I would go on average 12-25 bloody shits a day. I shit my pants quite a few times also. I tried everything, all the drugs (Sulfasizine, Asacol, Asacol HD, Prednisone, Lialda, Remicade, Lomotil), some diets (SCD, gluten free-still on gluten free cause I’m Celiac) so I know what you mean man. Remicade didn’t work for me and I was really relying on that one to be my cure cause after that I had no other options but to suffer longer or get the colon snipped out of me. I chose to get the colon removed last Tuesday, Dec. 6th and I’m feeling great already. This disease is a guessing game, we all go through phases where we think we’re doing something right and find out it doesn’t work. Keep searching bro. I hope you can find something to get you to remission. I wish I did, I would’ve stuck with Remicade had it worked for me, but I broke out in a drug rash and was still shitting blood just as much as I was not on it. I hope you have a good doctor, one that knows his shit, cause honestly, most of them suck. I finally found a good one on my 3rd try, but it was too late, my colon was in too bad of shape. Luckily I have a great surgeon, all he does is remove people’s colons and he gave me my life back. I’m definately rooting for you to find some answers, it sounds like you’re doing all the right things, hang in there bro.

    Blake

  2. George in Napa December 13, 2011 at 6:00 am #

    Hi Sam,
    My doc also wants me to start 6-mp because nothing else seems to be working for me, except prednisone. Right now I am taking 10 mg per day of prednisone and hope to be off the miserable stuff in a week or two. Its almost 5a.m. right now in California and I have been up since 3:30 a.m. because of the insomnia that I get from that crap. I was researching 6-mp about a week ago when I found this site. I do not like what I have been reading about 6mp and I am still searching for other options. I still do the SCD diet (12 weeks now) but so far I haven’t seen much a change with my UC. In the past when I stopped the prednisone, a flare usually starts in 2 or 3 weeks….. in the meantime I will still be searching to see what other solutions may be out there.

    I am 66 years old and I would rather listen to my grandson bang on his toy drum than be tortured by sitting in a room watching Regis and Kelly or The View. (>:

    George in Napa

    • Rebeka
      Rebeka December 13, 2011 at 11:03 am #

      George, I just finished taking prednisone a week ago and I was plagued by insomnia as well. I had enough after a while and bought Valerian Root. It helped me sleep through most of the night. I can only recommend it – it’s all natural and it stinks like hell. Not sure if it works for everyone. I take one pill and it helps, my husband needs three though. I felt like after sleeping more I improved overall.

      • George in Napa December 13, 2011 at 12:32 pm #

        Rebeka, Thanks for the tip on Valerian Root. I did a google on it and it looks interesting. After I have about 3 or 4 nights of sleeping only 4 hours a night, I will take a couple of over-the counter WalMart brand sleep-aid pills. I will usually get a good eight or nine hours sleep when I take them but I don’t like to take them too often because they make me feel groggy when I take my hour morning hike between 6:30 – 7:30. The grogginess usually wears off by 9 a.m.

  3. Charis December 13, 2011 at 11:06 am #

    I was on 6 MP earlier this year to try to get a flare with my j-pouch to go away. It’s not a fun drug (well, I guess none of them are really). I lasted about 2 weeks on it before I stopped it. I really hope you don’t have to go that route.

    Hopefully you’ll have a nice Christmas and maybe 2012 will be better!

    Charis

    • George in Napa December 13, 2011 at 12:38 pm #

      Charis, I’m going try to do whatever I can to stay away from that 6mp stuff. I’ve read a lot of negative stuff about it.
      I hope that you have a nice Holiday season as well.

      George

  4. Kimberly July 8, 2013 at 4:38 pm #

    Hey Sam,

    I just came across your story by chance while researching Prednisone and Valerian root on the Internet (George and Rebeka talked about it in the comment section, so it popped up) I have been reading stories daily on this website since 2011, but somehow missed yours. Until today.

    I just wanted to see if anything ended up working for you?

    Like you, I’ve tried medications but never found anything that really worked. I was on Remicade for a year, but spent the last 2 months of that time with the horrible joint pain and swelling.

    Having just come out off a 16 day stay in the Hospital, I’m more than a little frustrated. It being my fifth Hospital stay in less than three years. The Prednisone finally stopped the bleeding and frequency, but I’m worried about what might happen by mid August when I’m finished weening off of it.

    Currently, I only eat protein, jasmine rice, rice crackers and humus, soggy veggies, and melon. I take Align (a probiotic made by Gasteroenterologists) L-Glutimine Powder, Boswellia and Vitamins. As I’ve mentioned, I’m better than I was in terms of frequency, but I’m not living any dream over here.

    Anyway, I’m really curious to hear what ended up happening with you, and I’m sure that other people are too.

    Hope this finds you well and happy,
    Kimberly

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