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

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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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My 20 year old son has had UC for the past two years. My son has been in a full blown flare up for almost 3 months now. He can't go to work as he has 10+ bowel movements a day. He has lost about 25lbs since the start of the flare up. He has been on Remicade, no luck, now Entyvio every 4 weeks, no luck and they want to move him to Stelara now. He also is taking prednisone. Anyone have luck with Stelara? After researching it, the % chance of it working is fairly low. Thoughts or suggestions needed. I'm becoming a desperate mom.

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@fleckster905

My 20 year old son has had UC for the past two years. My son has been in a full blown flare up for almost 3 months now. He can't go to work as he has 10+ bowel movements a day. He has lost about 25lbs since the start of the flare up. He has been on Remicade, no luck, now Entyvio every 4 weeks, no luck and they want to move him to Stelara now. He also is taking prednisone. Anyone have luck with Stelara? After researching it, the % chance of it working is fairly low. Thoughts or suggestions needed. I'm becoming a desperate mom.

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I’m a mom with 21yr old daughter with UC for the past 4 years. She’s been in severe flare up for 13 mos. Humira did not help at all but she started Stelara this week. Also interested in hearing how others found Stelara.

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My sister has ulcerative colitis and hasn't had any success in finding a gastroenterologist to relieve her pain and symptoms. She's not getting enough nourishment due to her u.c. ,which is causing other issues. She reached out to Mayo Clinic in Rochester and was told she has to wait 4 months, to get an appointment, from the time they receive her medical records. Can someone reach out and provide some direction on how she can expedite an appointment with a specialist at Mayo Clinic? She needs help now.

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@512epworth

My sister has ulcerative colitis and hasn't had any success in finding a gastroenterologist to relieve her pain and symptoms. She's not getting enough nourishment due to her u.c. ,which is causing other issues. She reached out to Mayo Clinic in Rochester and was told she has to wait 4 months, to get an appointment, from the time they receive her medical records. Can someone reach out and provide some direction on how she can expedite an appointment with a specialist at Mayo Clinic? She needs help now.

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Call the GI desk every morning and ask if there have been any cancellations. Sometimes it can be the same day. The other option is come in through the ER. Best of luck.

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@susanemaa

Call the GI desk every morning and ask if there have been any cancellations. Sometimes it can be the same day. The other option is come in through the ER. Best of luck.

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Susan, thank you so much for your insight. I'll forward to my sister.

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Colleen, I've been a flare for approx.5 years. I have now been on infliximab after 4 other drugs that didn't work. Remission is happening 🙂 so my question is probiotics, should I start one and if so what strains and how many cfu's?
Rod Johnson

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@johnson53rl

Colleen, I've been a flare for approx.5 years. I have now been on infliximab after 4 other drugs that didn't work. Remission is happening 🙂 so my question is probiotics, should I start one and if so what strains and how many cfu's?
Rod Johnson

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That’s great news! I’m glad you found something that works! That Xeljanz correct?

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No It's infliximab a generic of Remiocade I believe.
Also There was a person looking for someone with uc, I would offer myself to chat.
Rod

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Hello everyone, I suffering too much from My son disease ulcerative colitis severe . He is undisciplined on his treatment and now the doctor said my be the disease develop to chron's so I hope All with My son to get better from this disease, can One tell me is possible this happened

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