Surgery experiences??

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I was diagnosed with crohns in 1999 and have had various treatments over the years with several flares and periods of remission. The crohns has been in a flare for 3+ years now with no sign of remission. In this time I’ve tried steroids, methotrexate, Humira and most recently infliximab. None have worked and my recent mri scan shows things are getting worse -stricture getting bigger, fistula not healed etc. My consultant thinks it’s now time to speak to a surgeon and told me to prepare that I may end up with a stoma. Having been so ill for so long I’m trying to embrace the idea of surgery in the hope it may give me some relief. I wondered if anyone could share their experiences with having surgery?  Was it as bad as you thought? Has it improved your day to day life?  Would you have preferred to carry on trying medication rather than the surgery?    I’d be interested to hear others views. Thank you. 

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  • Posted

    Hi Tracy, 

    I must commend you for going this long without an operation because the norm in Crohns is that within 5 years one would require surgery ~ so well done 👍.

    Had a resection this year and quality of life much better than b4 with medication. Except for a few hiccups, but  slowly but surely I am getting back to the top.

    I was told I would be needing a stoma but ended up without it. 

    I would say do ur research, weigh the pros & cons. Ask questions from your surgeon, consultant & stoma nurses. All in all be positive. As stress can induce a flare prior to surgery. Surgery is best when you are in top form and when planned=not done as emergency. 

    We will definitely beat Crohn's all things being equal.  

    Good luck. 

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  • Posted

    Hi. I struggled 10 years before having surgery. The surgery itself was pretty gruesome (but this was 20 years ago), I didn’t have a stoma but had a resection & strictioplasty. I do have quite a big scar still but again this was before all the high tech surgeries they can do now. My recovery time was quite quick, around 6-8 weeks & then I went into remission for almost 20 years. So I would definitely recommend surgery & have even been on at my Drs to do it again (having been flaring for a year now). What ever you decide I wish you all the best xx 

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  • Posted


    Like you I was diagnosed in 1999, after both my children were born by 2003 I was in a continual flare! I was on azathiopeine, I had tried other medication but they didn't suit me, I was in a contunual flare for  7 yrs,  I was eating mainly "bland"food to try and get on with my life as best I could having b12 injections, vitamin d etc.. I had been scared to have an MRI but I knew I needed one, eventually in 2016 I agreed, this showed I had three strictures.

    Anyway they said the best route now was to have elective surgery, I had the surgery in may this year and so far so good! It is a big operation but from my point of view I would definitely recommend it, i wasn't able to eat much at all due to the strictures and now I can eat anything vegetables, fruit, etc.. 

    My quality of life has improved so much, I lost a lot of weight and I am now at a healthy weight. I do still get moments where I can't believe I can eat as I had it so bad for so many years, I was offered the operation in 2005 and I refused as my children were so young,  I knew after all these years the time was right for me now. I hope this helps.

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