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 @jessieanderson

Interested in more discussions like this? Go to the Digestive Health Support Group.

Welcome @ritabtripp, I thought I would reply to your post here so that you can meet other members discussing ulcerative colitis and might be able to respond to your question on stem cell treatment for UC.

Stem cell treatment for UC may hold some promise but I would shy away from any stem cell treatment centers if it's not part of a major teaching hospital or health facility like Mayo Clinic.

Do you mind sharing more about the location you are considering for the stem cell treatment?

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@johnbishop

Welcome @ritabtripp, I thought I would reply to your post here so that you can meet other members discussing ulcerative colitis and might be able to respond to your question on stem cell treatment for UC.

Stem cell treatment for UC may hold some promise but I would shy away from any stem cell treatment centers if it's not part of a major teaching hospital or health facility like Mayo Clinic.

Do you mind sharing more about the location you are considering for the stem cell treatment?

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A friend took her daughter who has Chrohn's to the Caymen Islands to Dr. Cona at the DVC. I was able to google it and find some info, but wondered if anyone else had used stem cell transplant to treat their UC. I know it hasn't been approved in the US yet, or at least that is my understanding. Her daughter ended up spiking a fever, but ended up okay, but still too early to tell if it will help.

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Has anyone else used stem cell transplantation to treat their UC?

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Entyvio is working but feel lousy with flares for 2 years. I have to go to Iowa City to get treated for SIBO if that's what the breath test shows. It's a 2 hour drive and I'm scared. I know there's no cure. I can't do the breath kits @ home. Too complicated for me. Can anyone relate to this? Really stressed. Maria.

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@ritabtripp

Has anyone else used stem cell transplantation to treat their UC?

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never heard of it, is this common?

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@mariajean03

Entyvio is working but feel lousy with flares for 2 years. I have to go to Iowa City to get treated for SIBO if that's what the breath test shows. It's a 2 hour drive and I'm scared. I know there's no cure. I can't do the breath kits @ home. Too complicated for me. Can anyone relate to this? Really stressed. Maria.

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I am on Entyvio as well. At the present I am doing ok, lots of. BMs in the AM but more solid. What do you mean by SIBO and breath tests? Never heard of breath test.

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I seem to get rashes or spots since I have started Entyvio. Round red spots on my hands which last a long long time. just recently I found a red scale round spot on my breast, just one, where the sun does not hit it. So I am not sure if this is from Entyvio or something else. The other thing I am dealing with is aching joints, shoulder, elbow, my legs when I start to walk but it works itself out. Does anyone else have these symptoms and what do you take or do? Seems like its been one thing after another after my diagnosis. Anyone?

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You can google SIBO. It's overgrowth of bacteria in the small intestine which causes lots of bad symptoms like bloating, gas, diarrhea, cramping and makes life miserable. The test is about 3 hours as you blow into a balloon every 15 min. to detect too much hydrogen in your breath. I was told IBS =D but I think the real culprit is SIBO. Then antibiotics are prescribed for 10 days. Maria.

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@christo56

I was diagnosed about a year ago, but I think I've had it 20 to 30 years - maybe longer (I'm 60). There have been some stretches of remission but recently it got quite bad.

I started treatment with prednisone and Lialda. I weaned off the prednisone but the Lialda alone wasn't enough to control my digestive symptoms. So I added imuron. Now I'm very stable, but the achiness still comes and goes. Pretty bad at times.

There was some talk about starting Humira, but I'd rather have less meds and took the more conservative route.

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Has anyone had UC in control with Entyvio but terrible IBS? That's where I'm @ and can't eat vegetables and many other healthy foods. I'd die for a lettuce salad again! Any special diet for IBS-D? Maria.

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