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Anyone had experience of strictures with UC?

Posted , 4 users are following.

AnnieMac1
AnnieMac1

Hi,just wondering if anyone has had any experience of having a stricture with ulcerative colitis?

I've had UC for 5 years now and I thought I was getting a lot better.I'm on humira and azathioprine and these have made a huge difference to my symptoms - so much more manageable, but still not gone entirely.

So I was surprised a colonoscopy and CT scan has showed I have two strictures in my colon, both about 4cm long. My consultant has advised he thinks I need surgery and last week I met with a surgeon who basically ideally would like to take my colon out!

They said they can't rule out malignancy as it isn't usual for people with UC to have strictures (is this right)and to have two is also very unusual. As they can't get through the stricture they can't see rest of my bowel and they are concerned that despite the drugs I'm on I've never been in remission in last 5 years. They basically think I either have cancer or am at high risk of getting in it??!!

Just wanted to know if anyone else as had to deal with a stricture, what sort of treatment was offered, and whether removing the colon is a usual response?

The surgeon is going to try another colonoscopy soon with a smaller tube to see if he can get through it and try to rule out malignancy, but he said even if he does now, my bowel is acting in a way that mans he thinks I will still be at risk?

My head is reeling with this so any experiences good or bad would be very helpful to hear.

Thankyou in advance

0 likes, 4 replies

4 Replies

  • jeff07718
    jeff07718 AnnieMac1

    Posted

    Hi , I don't have any knowledge of strictures sorry but my son had a colon removal, ileostomy, after problems with UC which lead to perforation. He had a reversal to j pouch after a year of healing, gaining weight and getting used to a stoma. He loves his internal j pouch and is symptom, pain and drug free. He now has a gym body and plays football again which he thought was never going to happen. You can look at Crohn's & Colitis facebook which has lots of entries and support. Ask if you need info about the ops as we did loads of research to get the best outcome . He went to John Radcliffe Hosp Oxford for the reversal surgery as the best !! would recommend to anyone. We got referral through GP and travelled but they were so experienced and helpful. Good luck. Sheila.

    • AnnieMac1
      AnnieMac1 jeff07718

      Posted

      Thanks Sheila,I've read some of your posts and others and it certainly makes a stoma or pouch seem like its not the worst thing in the world,so that's reassuring.

      Thanks anne

  • esther77657
    esther77657 AnnieMac1

    Posted

    Sorry to hear that you are experiencing problems. i was admitted to hospital two years ago with a stricture. At the time, I had been diagnosed with 'undetermined colitis'. My bowel was completely blocked and I was informed that I would likely be having my whole colon removed in the next day or two. The stoma nurse visited me and prepared me. At the same time, I was given intravenous steroids. Within a couple of days, the steroids began to work and I passed wind (which was a step in the right direction). I was spared surgery, spent 10 days in hospital, and slowly resumed normality. It took about 6 weeks in total. My diagnosis was changed to Crohn's disease because of the stricture and where the inflammation is in the colon. I have radiacally changed my diet and lifestyle, and I am on anti-TNF medication like you. On leaving the hospital, the surgeon suggested I may get another year out of my colon, or possibly two, but that I would likely end up having the surgery. I've avoided it thus far! I wish you a good outcome.

    • AnnieMac1
      AnnieMac1 esther77657

      Posted

      Oh thank you so much for replying.I really appreciate that.Its good to hear how things go for people.My consultant has been wondering whether I have crohns rather than colitis too.it would make more sense then!

      I hope you stay well 😃

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