I met with my doctor yesterday and received my diagnosis. I have callaginous colitis. This is the most unwell known form of colitis, only recently discovered in the last few decades. It, like UC has no known cure or cause. The drugs most commonly used to treat UC have no positive effect and often a negative effect on this form of colitis. It has taken a total of 2 months to finally receive this information, to find out what I have.
So I've researched, talked to the doc. So far all I know is spicy foods ill-advised, caffeine not so good for some, no pain pills except tylenol/acedominiphine, high fiber not great, does not cause or lead to colon cancer. So, I'm eating more binding foods and the doctor has me on a pepto-bismal regiment for a while, 3 pills, 3 times daily. Also recommended using Immodium. I have starting adding supplements, like Omega-3, B-Complex, and Align pro-biotic to my daily Multivitimin. There aren't many case studies on this form of colitis, so in a sense I'm becoming my own case study, trying to find something that works.
Anyone out there in this board have this form of colitis?
Re: callaginous colitis
It's spelled collagenous, that might help in your research.
It is a form of microscopic colitis. It's good you have a diagnosis. Do you have UC as well?
The pepto is a salicylate...hope it helps. Have you tried any of the 5ASA such as asacol meds as of yet?
The reason for the suggestion is that the salicylate medication of the Pepto won't be dispursed in the stomach or small intestine and will be utilised in the colon where it's needed.
How much of your colon is affected? Is Collagenous colitis usually affecting the entire colon or areas?
I have not read that fibre isn't good, but I think it would depend on which fibre combinations you eat. A food diary will help.
Fibre supplements will help bulk the stool.
I wonder if a good probiotic would be a good thing for you to take...I would definitely try it.
Curious if you are in the middle age category as well?
Thank you for bringing up this diagnosis...it's definitely in the inflammatory category. I hope you find remission.
Re: callaginous colitis
Thanks for the spelling tip, could definitely help. I do not have UC, just CC. It does not affect the small intestine just the large, and seems to be widespread throughout the colon. I think I'm getting to the end of my flair. I am trying probiotics, Align, as well as Omega-3, B-Comlex vitamin in addition to my multi. I'm drinking more water, and trying to change up my diet, eating a little less red meat and more chicken, fish, and other sources of protein. High fiber should be avoided during flairs, as well as spicy foods. I am however not giving up on the caffeine, being an ex-problem drinker as well a recent ex-smoker. I need to hold onto one vice at least.
Actually I'm not middle age, far from it. I'm in my mid-twenties, and fairly active.
I'm working on finding some good lifestyle changing, being even more physically active, eating more balanced meals, learning some relaxation techniques and just taking better care of myself.
I'm doing more research on it.
So far, the little research done on this disease shows that typical colitis treatments such as steroids, and other prescriptions have little effect and in some cases, such as mine, they can make the condition worse. While on prednisone when it was suspected I had UC, I was in much worse shape during being on the drug, and a while after while it was leaving my system.
Thanks for your input.
If you think of anything else, I'd love to hear it. Meeting with my doc in another two weeks to go over my progress. Also talking with my chiropractor who also is into alternative holistic medicine and approaches.
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