Colitis But Not UC?

Symptoms:

I haven’t been formally diagnosed with Ulcerative Colitis, but UC is the closest thing to the diagnosis that I do have. My symptoms are largely diarrhea with steatorrhea. I guess I’m lucky because I don’t have any bleeding. When I’m symptomatic I get really tired.

I’ve attempted the SCD diet a few times, but I’m unable to get past the first part of it. I only tolerate cooked greens (spinach, kale etc.) and lean proteans (eggs, chicken breast). I don’t tolerate grains, fruits, other vegetables, or fats well at all.

My Story:

I’d had digestive problems all my life, but had pretty much gotten them squared by my mid-twenties through changes in diet (no processed food, organics, fiber, gluten free/dairy free). I took a trip to Central America where I fell ill with dysentery. I was very ill but recovered after several rounds of antibiotics. When I returned to the states something just didn’t feel right. Over the proceeding years I became sicker and sicker, mostly treating my symptoms with dietary changes.

I didn’t talk to the doctors about my symptoms

because I was concerned that they would

dismiss me as having IBS.

I felt that IBS was just an other way of saying “we don’t know what’s wrong with you go away.” As the years went by, I started having more and more loose stools regardless of what I ate. I pursued the infectious disease angle aggressively at first because the real trouble all seemed to begin after being in Central America . The extensive O&P tests turned out negative so I gave up on that and began look at other diagnosis . After seeing several doctors (naturopaths & alopaths), I finally got a colonoscopy. The results showed very mild inflammation of my colon, but otherwise there were no chronic changes or ulcers. I was put on Apriso (4 x1d). I also started taking loperamide. Both of these helped for a while but eventually stopped working. Later on, I was put on lomotil which helped tremendously for two months but has recently stopped helping at all. My symptoms are slowly returning and I’m not sure what to do next.

I was wondering if anyone else has has been diagnosed with just colitis?

Does any of this sound familiar at all?

I’d really like to avoid going on steroids because they sound pretty awful.

How long does it take for the SCD diet to start working?

I’ve been on even even stricter course of it for a couple of years now.

How do you find remission?

I keep waiting for it to happen but I just seem to hit this plateau where I get a little better but then slide backwards again.

Where I’d Like to Be in 1 Year:

I would like to be mostly symptom free and on my way to including more foods into my diet. I’d like to have enough energy and stability to enter into a PhD program. Right now, I’m not convinced I have the staying power for such an intense course of study.
Medications I’ve Tried:
Apriso – Helped at first but I’m not sure if its still helping or not.
Lomotil/Loperamide – Both of these helped at first, especially Lomotil, but they are opiate based so you build tolerance quickly. Their mode of action is pretty clear, IMO. They slow the digestive system down so more water is extracted.
saccharomyces boulardii – worked great at first, but stopped helping after a while.
Pepto Bismal – didn’t really help at all, but I’m giving it an other go. Not sure why this didn’t help. Other people report it being helpful.
Boswellia – I haven’t taken it consistently so undecided.
Psyllium Husk – Helps, but only so much. It’s mostly a bulking agent.
VSL#3 – Not sure. Need to try more of it.
Mediclear Plus – This is a natural, curcumin and L-glutamine based anti-inflammatory designed especially for people with digestive problems. It’s been a big help so far, but I may have plateaued.
Antibiotics – I’ve been on a few over the years, the one that helped the most was Spectrum DS. The others mostly did nothing.
Bowel Cleanse – I did a bowel cleanse before the scope and was symptom free for 4 weeks afterward.
written by Michael
submitted in the Colitis Venting Area



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3 Responses to Colitis But Not UC?

  1. Bev March 31, 2012 at 3:26 pm #

    Hi Micheal…

    Try and keep taking that VSL3. I’ve heard good things about it. I take one 50 billion ‘critical care’ probiotic a day, and no other meds, because I refuse meds. I am doing very well on the probiotic, right now, anyway. I have ulcerative pancolitis (meaning total colon involvement).

    Colitis is just another word for diarrhea, caused by either illness, or drug reactions. It usually eventually goes away. There are no ulcers in the colon, but I believe that there can be mild inflammation. Anyone can and does get that from time to time. Ulcerative colitis never goes away (altho it can go into remission), and it does involve ulcers in the colon. Sometimes they are there, and when in remission, the ulcers diminish, or disappear.

    I hope I helped…but I probably didn’t!

    Cheers, and good luck,
    Bev:)

  2. Bev March 31, 2012 at 3:28 pm #

    Oh, I forgot…AVOID ALL ANTIBIOTICS if possible. They will just rob your colon and gut of good bacteria…thus the reason for taking the probiotic!

    Bev:)

  3. OrdinaryWorldWhereRU April 1, 2012 at 7:04 am #

    Hi. It kind of goes without saying but saying it anyway – everyone is different so what works for one person may not work for another. Me I am on remicade and asacol and I also eat a low fiber diet. Along with that I avoid caffeine, carbonated beverages, and alcohol. My GI doc said I have been one of his more severe UC patients though. A lot of his patients have more of a variety of food choices. One time I tried the psyllium fiber and it really did my system in. Things went downhill rapidly after that. I was told no aspirin, advil, or aleve. Pepto bismal contains aspirin so that’s off limits for me. Although large doses of steroids are really harsh, maybe you won’t need such large doses. I was also told absolutely no casual use of antibiotics. Not only does it throw off the balance in the gut but can lead to c-diff. Have you been to a GI doctor? If yes, what did the doctor say?

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