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.

@missie

Hi, My daughter has U.C. She has pain in here back all the time and it is worse when she is in a flare up. Has anyone of you had this problem? She is on pain meds that she would like to get off of. Hope you all can help, Missie

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I find with the joint pain that it's best to keep moving. I also take anti-inflammatory medicine rather than pain meds. That's just what worked for me... But I know some people experience much worse pain than mine.

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Hi @christo56, welcome to Connect.
I'm glad you found this discussion about UC. I'm sure @missie @dongee @sherw and others will join me in welcoming you to our group.
Christo, I'm sorry to hear that things aren't going so well at the moment. What do you do during the flare-ups? Do you have non-medicinal tactics that help?

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@colleenyoung

Hi @christo56, welcome to Connect.
I'm glad you found this discussion about UC. I'm sure @missie @dongee @sherw and others will join me in welcoming you to our group.
Christo, I'm sorry to hear that things aren't going so well at the moment. What do you do during the flare-ups? Do you have non-medicinal tactics that help?

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I feel like I'm doing so much better because the digestive issues have settled dramatically. It's really just the joint pain and stiffness that I have no idea what to do for

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Hi, I am new to this forum. I have been diagnosed with ulcerative colitis and IBS-C and have suffered from this for 31 years. I am currently on Colazal and Linzess and use Rowasa enemas sometimes. When I am not having a flare up of UC, Linzess works pretty well for me. But, I am now having a flare, and am suffering from constipation, pain, bloating, gas and rectal bleeding. I eat lots of fiber, eat a healthy diet, drink lots of water and exercise regularly, but I tend to be stressed, and my gastroenterologist's recommendations don't really work for me. I have also take probiotics, but I don't think they helped much. Does anyone have any suggestions as to something that might help me?

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Welcome to Connect @cdancer2. I'm glad you found us. I've moved your message to this existing thread about ulcerative colitis so that you can connect with @christo56 @missie @dongee @sherw and others who are managing this condition. You may also be interested in this discussion about IBS-C https://connect.mayoclinic.org/discussion/ibs-c/ and connecting with @flip1949 and @keysgull.

CDancer - what are your major stressors? What recommendations has your gastroenterologist made that don't really work for you?

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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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