Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Anyone here with ulcerative colitis?

HI. My dad is having flare ups with his UC. He have had it for many years. I saw my parents this weekend and didn't really talk with dad much bec he spent most of time in bed. He's also grouchy bec of pain which I can understand bec when I had AS flare ups I was really grouchy too.

So tell me more about UC, normal for it to get worse before gets better? I do remember him going into hospital on Christmas 1979.

Hi,

My colitis got much better as far as ulcerations go, and I think they have been non-existant for years. Before that happened though, I was treated with 3 days of infusions (20 or more bags worth) because I was in an 8 month flare. The doctor who treated me gave me a list of foods to avoid and I pretty much stuck to that list ever since. They are basically the same foods as IBS trigger foods, but with a few exceptions. I never had to go back for treatment, but I do have some problems with UC off and on.

However, now that my colitis is not that active, over the past few years I have been slowly developing something else inflammatory inside most of my GI. It's something that could bother me every day if I let it. I think this is happening because of my lack of effective AS treatment, not so much because of having colitis. Ecotrin is the only pain reliever (NSAID/Aspirin) I can take that will not worsen my IBD symptoms... because of the special coating (I'm not sure if this would be good for active ulcerative colitis though, because it would dissolve closer to the colon). Other Nsaids and pain relievers just make my intestinal problems worse. I take boswellia too (herbal supplement), which is said to be good for colitis, but it only seems to help my AS, but at the same time, it does not worsen my IBD symptoms either.

One of my biggest problems is with fats/oils. Here is two links that might help show you the problem I had with fats.
http://www.helpforibs.com/diet/trigger1.asp
http://www.helpforibs.com/diet/trigger2.asp

In addition to what I ate and didn't eat was...

White poultry only, no fish, red meat thoroughly drained, no seeds, no foods with skins (peas, corn, apple skins, potato skins, etc), nothing too stringy or leafy (like celery, lettuce), no nuts (too hard to digest during flares/also contain oils), no cooking oils or foods with fats and oils, no fried food, and so on. It's been years, and I still have trouble with these foods. Olive oil is the only oil/fat I can handle.
I have not tried coconut oil though. I can get away with eating some of these foods in moderation now, but I have to be really careful.

I hope this helped and that I didn't go over-board.
Take care,
James.

Hi, Can I encourage you to do some independent research on UC and Low Dose Naltrexone, (LDN), as I believe it really gets good results for this.

www.lowdosenaltrexone.org

For example: My own Doc told me about a young lad of 12yrs old scheduled for surgery to remove his bowel,(he would have been left with a bag for the rest of his life) after taking the LDN she prescribed, the surgery was cancelled.

Jenny

I have/had ulcerative colitis (the UC symptoms are gone, but the underlying disease process still exists). The UC symptoms are gone because my colon was removed due to the fact that their medications (primarily prednisone) were completely ineffective and likely did additional harm to my body.

UC for most seems to come in flares (sound familiar?), however that is not the rule. For example, I was fortunate enough to go five years between UC flares. The second, and final one, is the one that got me. The first flare was able to be contained with prednisone and sulfasalzine. The majority of accounts I read seem to allude to folks having flares every one-and-a-half to two years.

Yes, I can relate to the grouchiness of it. It would just hurt your insides to move. Near the end, while hospitalized, anyone even bumping my bed would have me recoiling in pain and discomfort, so tread lightly around your father. Then there is the fact that you are more or less restricted to home or places where you know you have uninhibited access to a bathroom.

I personally don't know of anyone that says it gets worse before it gets better. Perhaps in the realm of one flare, yes, if that individual goes into remission. However, looking at the big picture and a series of flares over many years, they are likely to be more severe and maybe longer in duration. Also, the risk of colon cancer increases greatly in individuals with UC as they age.

Hope he's in good hands and is finding something that is working out for him.