What descision to make?

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I first started to suffer bouts of horrendous abdominal pain in 1994. 6 years ago I had a colonoscopy & biopsies evidently came back normal despite stenosis of ileocecal valve. I was discharged with a diagnosis of IBD. Serveral attacks later, including trips to A&E & being sent home with painkillers my new GP said we had to start again from scratch after 6 awful months of pain following a flare up last March. Since December I have had colonoscopy, MRI & started on vit B12 & iron infusions. Yesterday I was finally told I have Crohn's. I have 3 very tight strictures in small bowel 10,7 & 5cm long. I've been given choice of recection or infliximab. Just don't know what to do. My decision is even harder to make given that at the moment I feel quite well. Any one had to make this choice?

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  • Posted

    Hiya, I'm in the exact same position, with Crohns in same area. I've decided I'm going to give infliximab a go. Originally, I was hell-bent on surgery to just get rid of it but after learning that it can come back, it isn't the final solution I was looking for. If I can have an infusion every 6-8 weeks and feel well then I'm all for that and only go for surgery when all other options are exhausted. I'm not fancying injecting myself so Humira is not an option either. I was diagnosed with Crohns in Dec 2011 and have been on Azathioprine ever since but they're not working-I just hope the infusions can start as soon as possible. I'm knackered and fed up with the pain!!

    Hope this helps,

    Nicki 😄

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  • Posted

    Thanks Nicki, just read my original post, was diagnosed with IBS 6years ago not IBD so now feel like I'm being rushed into a decision. Consultant recommending surgery. Not on any meds at the moment but have a daily battle with pain & D. I work in a school so have some concerns about picking up lots of infections if I go with the Infliximab.

    Hope you get the infusions soon, good luck with those

    Helena

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  • Posted

    Hi Helena, how are you? Have you made your decision? I've got my first infliximab infusion on 10th April, so hoping I will finally start to feel better. It's no wonder you feel rushed into a decision after only receiving your diagnosis of Crohns the day before!! My nurse suggested I try the infusions first and if I don't respond then surgery will be next. I'm a college lecturer and am worried about picking up bugs too, and I have been really lucky up to now without getting anything too nasty but I know what you mean with such a reduced immune system. It's such a cruel disease isn't it? Not straightforward at all. So frustrating!!

    Nicki 😄

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  • Posted

    Hi Nicki, very up & down I'm afraid. The consultant I saw had the wrong date for MDT meeting so my case isn't being discussed until Friday. I met IBD nurse who is lovely & very helpful. Having never been diagnosed I was on no treatment so I have been put on prednisolone which I'm barely tolerating. Symptoms more like obstructions at the moment, so painful!

    Hope the infusions go well, will be interested to hear how you are doing with those.

    Good luck

    Helena

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