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jkstanley
@jkstanley

Posts: 1
Joined: Mar 03, 2013

I have Ulcerative colitis and wondered if anyone here has it

Posted by @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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sherw
@sherw

Posts: 4
Joined: Feb 24, 2016
Posted by @sherw, Apr 4, 2016

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


missie
@missie

Posts: 7
Joined: Apr 05, 2016
Posted by @missie, Apr 19, 2016

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


missie
@missie

Posts: 7
Joined: Apr 05, 2016
Posted by @missie, Apr 5, 2016

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


bmaske
@bmaske

Posts: 1
Joined: Apr 06, 2016
Posted by @bmaske, Apr 5, 2016

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.


christo56
@christo56

Posts: 3
Joined: Jul 05, 2016
Posted by @christo56, Jul 6, 2016

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.


Colleen Young, Connect Director
@colleenyoung

Posts: 3685
Joined: Jul 23, 2014
Posted by @colleenyoung, Apr 6, 2016

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.


missie
@missie

Posts: 7
Joined: Apr 05, 2016
Posted by @missie, Apr 7, 2016

​Thank you so much!! Missie


sherw
@sherw

Posts: 4
Joined: Feb 24, 2016
Posted by @sherw, May 12, 2016

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


dongee
@dongee

Posts: 6
Joined: Mar 09, 2016
Posted by @dongee, Apr 18, 2016

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


missie
@missie

Posts: 7
Joined: Apr 05, 2016
Posted by @missie, Apr 19, 2016

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


christo56
@christo56

Posts: 3
Joined: Jul 05, 2016
Posted by @christo56, Jul 5, 2016

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.


Colleen Young, Connect Director
@colleenyoung

Posts: 3685
Joined: Jul 23, 2014
Posted by @colleenyoung, Jul 7, 2016

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?


christo56
@christo56

Posts: 3
Joined: Jul 05, 2016
Posted by @christo56, Jul 24, 2016

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


CDancer
@cdancer2

Posts: 7
Joined: Aug 02, 2016
Posted by @cdancer2, Aug 12, 2016

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?


Colleen Young, Connect Director
@colleenyoung

Posts: 3685
Joined: Jul 23, 2014
Posted by @colleenyoung, Aug 12, 2016

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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