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I have Ulcerative colitis and wondered if anyone here has it

Posted by @jkstanley in Digestive Health, 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


Posted by @sherw, Mon, Apr 4 at 6:01pm CST

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


Posted by @missie, Tue, Apr 19 at 8:20pm CST

I agree about coffee. My daughter loves salad but she knows to chew it really well. Thank you, Missie


Posted by @missie, Tue, Apr 5 at 12:43pm CST

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


Posted by @bmaske, Tue, Apr 5 at 7:29pm CST

I understand what she's going through. I have UC and been in flare without relief since 2013. I have to take pain meds for stomach, muscle, joint and back pain. I've learnt that everyone's UC condition is different and that not all drug treatments work for everyone. Hope your daughter gets some relief soon.


Posted by @christo56, Wed, Jul 6 at 12:21am CST

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.


Posted by @colleenyoung, Wed, Apr 6 at 8:25am CST

Hi @missie and @bmaske, welcome to Connect.
I moved your messages to this existing thread on ulcerative colitis to connect more people. Please meet @sherw and @jkstanley. I'm also tagging @frankkirsch.


Posted by @missie, Thu, Apr 7 at 6:09pm CST

​Thank you so much!! Missie


Posted by @sherw, Thu, May 12 at 9:31pm CST

I know that when the UC abdominal pain kicks in, for me a cold wash cloth to the stomach area helps calm it down. There are trigger foods that I've cut out of my diet that have helped with the abdominal cramping. I've discovered cold and/or ice packs are what give me relief when I have joint pain. Contacting your GI doctor is where I would start. It could be a form of joint pain associated with the UC. I hope this is of some help to you. Best wishes Sherw


Posted by @dongee, Mon, Apr 18 at 6:13pm CST

You might google Butric Acid (AKA Butyrate). It may be helpful.


Posted by @missie, Tue, Apr 19 at 8:17pm CST

I will look into butyrate, thank you so much, Missie


Posted by @christo56, Tue, Jul 5 at 7:35pm CST

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.


Posted by @colleenyoung, Thu, Jul 7 at 9:13am CST

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?


Posted by @christo56, Sun, Jul 24 at 12:01am CST

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


Posted by @cdancer2, Fri, Aug 12 at 8:40am CST

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?


Posted by @colleenyoung, Fri, Aug 12 at 9:32am CST

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 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?


Posted by @cdancer2, Fri, Aug 12 at 9:42am CST

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.


Posted by @colleenyoung, Fri, Aug 12 at 4:04pm CST

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?


Posted by @miraklwkr, Fri, Aug 19 at 3:44pm CST

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?


Posted by @cdancer2, Mon, Aug 22 at 9:48am CST

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.


Posted by @colleenyoung, Sat, Aug 20 at 10:10am CST

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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