I’d like to meet others with ulcerative colitis

Posted by jkstanley @jkstanley, Mar 16, 2013

I have Ulcerative colitis and wondered if anyone here has it and have had experiences of thinking that you can get cancer with this. I am really scared but otherwise I feel fine today. 

Interested in more discussions like this? Go to the Inflammatory Bowel Disease (IBD) Support Group.

Profile picture for kayabbott @kayabbott

Collagenous colitis is also called microscopic colitis; it is an autoimmune disease that is only visible by examining biopsy samples under a microscope. It is more common with those of us with celiac disease. I try to manage mine with diet and de stressing. Everyone is different in what works, I eat yogurt and kombucha for probiotics, also some psyllium husk/water (soluble fiber feeds "friendly" bacteria and insoluble adds bulk, and may also bind with bile that can irritate the colon. ) As always, check with a doctor before you make a big change in diet or pills. https://my.clevelandclinic.org/health/diseases/17227-microscopic-colitis https://www.hopkinsmedicine.org/health/wellness-and-prevention/foods-for-diverticulosis-and-diverticulitis

Jump to this post

Thank you for that info.I also take yogurt and my intention is to take more of it.

REPLY

I'm 84 years, I have had this since my early 30's. Had more coloniscopies than I can remember, 1 every year till my 60's, I said no more, did it every 5 years till 80
I'm finished, if I get cancer so let it b.
If they didn't find any polyps don't have 1 every year .no cure for it, you just manage it with meds. I hav a flare maybe 3 or 4 times a year
And manage it with prednisone and. Sulfaasalazone. Good luck.
Sorry you hav this curse.

..

REPLY
Profile picture for golfngal @golfngal

I'm 84 years, I have had this since my early 30's. Had more coloniscopies than I can remember, 1 every year till my 60's, I said no more, did it every 5 years till 80
I'm finished, if I get cancer so let it b.
If they didn't find any polyps don't have 1 every year .no cure for it, you just manage it with meds. I hav a flare maybe 3 or 4 times a year
And manage it with prednisone and. Sulfaasalazone. Good luck.
Sorry you hav this curse.

..

Jump to this post

Hi @golfngal - I believe I had three colonoscopies in one year, after one of the "polyps" removed at my first ever one turned out to be neuroendocrine cancer. I thought that was a lot of colonoscopies, but sounds like you are the true veteran expert. 🙂 (The end of the story: After much testing, I have no cancer left in my body. I will have another colonoscopy every 2-3 years for now).

You mentioned you have 3 or 4 ulcerative colitis flares per year and manage it with sulfasalazine and prednisone. For how long do you have to be on these medications each time? Do they help tame the flare quickly?

REPLY
Profile picture for Lisa Lucier, Moderator @lisalucier

Hi @golfngal - I believe I had three colonoscopies in one year, after one of the "polyps" removed at my first ever one turned out to be neuroendocrine cancer. I thought that was a lot of colonoscopies, but sounds like you are the true veteran expert. 🙂 (The end of the story: After much testing, I have no cancer left in my body. I will have another colonoscopy every 2-3 years for now).

You mentioned you have 3 or 4 ulcerative colitis flares per year and manage it with sulfasalazine and prednisone. For how long do you have to be on these medications each time? Do they help tame the flare quickly?

Jump to this post

@lisalucier I start out 40 mg for 3 days, 30 for 3 days, 20 for 3 days, 10 For 3 days. Usually takes care of it. I take sulfasalazine every day
Sometimes. I forget to take it. I hate taking any thing.
Happy u are clear of cancer

REPLY
Please sign in or register to post a reply.