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.

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

REPLY

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

REPLY
@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

Jump to this post

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.

REPLY

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.

REPLY
@colleenyoung

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.

Jump to this post

​Thank you so much!! Missie<br />
<br />

REPLY

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

REPLY
@dongee

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

Jump to this post

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

REPLY
@sherw

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

Jump to this post

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

REPLY
@colleenyoung

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.

Jump to this post

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

REPLY

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.

REPLY
Please sign in or register to post a reply.