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stoma reversal or full colostomy ?

Posted , 5 users are following.

julia186
julia186

hi fellow suferers, i've had uc from the age of 16, i'm now 52. my life consisted of meds, pain and lots of hospital stays untill 3 years ago when i had my stoma fitted. since then i've been able to get on with my life pain and meds free so imagine my shock at my last checkup to be told i need another op. i was going to ask for feedback or advice but listerning to your story's it reminds me how bad my life was before and i can't take the risk of going back to that. i think the best thing for me is take it all away and be done with it. even though you don't know me you've helped more than you know so thanks x

2 likes, 7 replies

7 Replies

  • ruari1
    ruari1 julia186

    Posted

    Good luck, Julia. Sounds as if you have the right attitude. Difficult I know, but keep on going, girl!
    • julia186
      julia186 ruari1

      Posted

      hi ruari1, thanks for your lovely message. wishing all good health to you and yours x
  • bustergut1
    bustergut1 julia186

    Posted

    Hi julia186 I really don't know how you've coped from the age of 16-52.

    ive only had this for 2 years( will be 59 this month) & no meds have helped me so they're talking about surgery. Now I'm starting to realise just get well & get your life back. Life's too short- get on & live it with quality. x

    • julia186
      julia186 bustergut1

      Posted

      hi bustergut1, thanks for your message. sorry your having such a bad time. i know surgery can be scary and its not for everyone but having my stoma / lleostomy really has changed my life for the better. i can go out all day and not have to think right were's the loo. i can eat anything [exept asparagus for some reason] small price to pay. but the biggest thing for me is no more pain. yes i know i have to have another op, they have to re-attach my still infected bit of bowel i have left or take it out. i can't take the risk of going back to what i was like before so it's coming out. your so right, life is short. i really hope everything goes well for you and you do get your life back x
  • louise01749
    louise01749 julia186

    Posted

    Hi Julia. I had my bowel removed at 22 which was 28 years ago. At 40 they removed my rectum as pre-cancerous cells were detected. I have never found the bag to be a problem, 99% of the time I forget I even have one. Having to be checked every 2 years for cancer was very stressful and I was very relieved to have the whole thing removed. Unless you have been chronically ill and in pain for years, it is hard for people to believe that an ileostomy can be the best thing that can happen to you.  I feel the medical profession do a lot of patient's a major disservice by not discussing surgical options sooner. My Specialist always referred to it as worst case scenario,when in fact, it could well be the best case scenario that you have it sooner, rather than coping for year after year with chronic pain. As for rejoining the bowel, making a pouch etc, it is not always successful and if you coped well with a bag already would you want to go through more unnessary surgery? I was given the choice to rejoin my bowel, but chose against it as the bag doesn't worry me at all. It is not a decision I have ever regretted. I hope this helps!
    • JonWHut
      JonWHut louise01749

      Posted

      Hi, I had the reversal about 4 years ago and have had constant problems with it in the last year or so. I now suffer from flare ups of proctitis, as well as numerous trips to the toilet - likelyhood is that I want to head back for the stoma again to get my form or life back again.
    • julia186
      julia186 louise01749

      Posted

      hi louise, i feel the same as you. i to sometimes forget i have a bag as it does'nt stop me doing anything in fact i do a lot more now than i ever did. my specialist was exactly the same about surgery even though i was in and out of hospital and on up to 18 tablets a day. how can that be better than having a little bag attached to your belly. i would say to anyone in the same situation have it done its a small price to pay to have your life back. thanks for your message its nice to chat to someone who understands what your going through as you've been there and got the t-shirt. i'm back at the hospital next week to let them know what i've decided. i'm like you, thanks but no thanks just take it away. hope you continue to be well, take care x
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