I have Ulcerative colitis and wondered if anyone here has it

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

Thanks for your reply, Colleen. I would say the biggest stressor now is dealing with my husband who has a business and needs to find more work. So, I am the main breadwinner, and this causes me a lot of stress, as we have an expensive mortgage. I dance ballet, and that helps me to cope with my stress. My gastroenterologist recommends fiber, drinking lots of water, exercise, probiotics and the medications he has prescribed. When I have a flare, the only thing that seems to help is to take prednisone, but he is hesitant to prescribe, as he is concerned it will weaken my bones. However, I take it only as long as necessary to reduce swelling of my colon and stop the bleeding and mucus secretions. The Rowasa enemas don’t help much, since most of the time, I can’t empty the entire bottle, as I may have impacted stool. My doctor does not seem to understand that even if I have a bowel movement once a day, I am still constipated if I have to strain and cannot empty fully.

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Thank goodness for exercise, especially something as expressive as ballet.
It sounds like you don’t have that much confidence in your gastroenterologist or that the rapport between the 2 of you is not the best. Time for a second opinion?

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My son was diagnosed with ulcerative colitis 3 years ago and he remains in a flare. He has been on all the known medications, has tried different diets, and he continues to suffer. He has lost about 30 lbs (he was already slim) and he is always exhausted. Are there any UC patients, or parents of adult children with UC, in NYC on this board?

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Welcome to Connect @miraklwkr. I moved your message to this discussion in the Digestive Health group so you could meet others who have been talking about ulcerative colitis. Please meet @cdancer2 @christo56 @missie @dongee @sherw and others who are managing this condition.

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@miraklwkr

My son was diagnosed with ulcerative colitis 3 years ago and he remains in a flare. He has been on all the known medications, has tried different diets, and he continues to suffer. He has lost about 30 lbs (he was already slim) and he is always exhausted. Are there any UC patients, or parents of adult children with UC, in NYC on this board?

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I am so sorry to hear about your son’s suffering from ulcerative colitis. I was diagnosed with it about 30 years ago and have been on medications since then. I am not located in NYC, so I can’t recommend any doctors there. I wish I had an answer to help your son, as I am looking for a successful treatment myself. What does his doctor have to say? I know this must be very hard for you to see your son suffering.

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I have been looking into FMT ( fecal matter transfers) for sufferers of ulcerative colitis. This treatment has been found to cure almost 100% of C Diff and is gVing encouraging results in UC. My sons kidney stones are believed to be caused by his UC. I am hopeful if he can cure his UC the stones will stop forming. Is this a possibility? Fingers crossed

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