1. < Inflammatory Bowel Disease (IBD)
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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. 

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cardigan | @cardigan | Sep 9, 2025
In reply to @kayabbott "Collagenous colitis is also called microscopic colitis; it is an autoimmune disease that is only visible..." + (show)
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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

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

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golfngal | @golfngal | Sep 25, 2025

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.

..

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Lisa Lucier, Moderator | @lisalucier | Sep 25, 2025
In reply to @golfngal "I'm 84 years, I have had this since my early 30's. Had more coloniscopies than I..." + (show)
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.

..

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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?

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golfngal | @golfngal | Sep 25, 2025
In reply to @lisalucier "Hi @golfngal - I believe I had three colonoscopies in one year, after one of the..." + (show)
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?

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@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

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Lisa Lucier, Moderator | @lisalucier | Oct 17, 2025
In reply to @sherw "Hello, I have had UC for 31 years. I'm monitored closely by GI these days and..." + (show)
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Hello, I have had UC for 31 years. I'm monitored closely by GI these days and feel as though they are doing everything they can for me. If flares are kept in check that's the big thing, the more inflammation the higher the risk is what I've read. Diet for me has been key. No coffee at all. Dropping coffee out of my diet stopped the need to run and I do mean run to the bathroom. I had no idea. I'm sure everyone is different, but that was key for me. I also don't eat raw veggies, too hard to digest. I do enjoy cooked veggies and try to get them into my diet regularly. Best Wishes

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@sherw - wanted to check in with you and see how things are going with managing your UC? Is it working okay for you to stop drinking coffee altogether?

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buddy5308204 | @buddy5308204 | Nov 21, 2025

I have been bleeding for 4 months now and my Dr. suspects UC. Is this curable?

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Lisa Lucier, Moderator | @lisalucier | Nov 21, 2025
In reply to @buddy5308204 "I have been bleeding for 4 months now and my Dr. suspects UC. Is this curable?" + (show)
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I have been bleeding for 4 months now and my Dr. suspects UC. Is this curable?

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Hi @buddy5308204 - welcome to Mayo Clinic Connect. I'm sorry to hear about the bleeding.

I wanted to let you know I moved your post here to this existing discussion on meeting others with ulcerative colitis, started by @jkstanley, so that you can connect with others who have this disease or who have a friend or loved one who has it:

- I’d like to meet others with ulcerative colitis https://connect.mayoclinic.org/discussion/i-have-ulcerative-colitis-and-wondered-if-anyone-here-has-it-and/

Will you be undergoing further testing for ulcerative colitis, then, buddy5308204? Is your bleeding now under better control?

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jej55555 | @jej55555 | Jan 24 12:21pm

Looks like this post is old. Would like to hear from others who have ulcerative colitis.

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Lisa Lucier, Moderator | @lisalucier | Jan 24 4:19pm
In reply to @jej55555 "Looks like this post is old. Would like to hear from others who have ulcerative colitis." + (show)
Profile picture for jej55555 @jej55555

Looks like this post is old. Would like to hear from others who have ulcerative colitis.

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@jej55555 - welcome to Mayo Clinic Connect. I'm guessing from what you said here that you also have a diagnosis of ulcerative colitis? If so, what symptom is currently bothering you the most?

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jej55555 | @jej55555 | Jan 29 12:30pm

I would like to hear from others who have ulcerative colitis, but noticed the post was from 2016. Is there a more recent post?
Thanks

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