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Total Proctocolectomy

Posted , 2 users are following.

JonWHut
JonWHut

Off to see the surgeon on Friday to discuss the removal of my rectum and anus and a permnament stoma.

Anyone else been through this that can give some information on what to expect, or any thing I need to be asking when I speak with the surgeon?

My UC has moved to the rectum and drugs are not putting in into remission so need to get rid to get a life back...

Thanks,

John

0 likes, 3 replies

3 Replies

  • LadyDraco
    LadyDraco JonWHut

    Posted

    I see that you have later posts. I hope everything goes perfectly and as PLEASANTLY as possible for you. I wonder how long you've been struggling with Ulcerative Proctitis? Having a proctocolectomy sounds terribly scary to me! My UC is on my left side, running vertical between my rib and hip, so I've not had your torment. I imagine it's not so different from mine, just "seated" in a slightly different area. You sound almost relieved! Is that how you feel? You will help yourself greatly while talking to your Doctor, whether about a medication, a surgery, a procedure, by ASKING him/her "What are the RISKS AND BENEFITS of...? And what is the best/worst outcome?" Ask the Doctor some questions if you have them. Many people are never fully informed! Doctors look to us for some cue about what kind of detail we want!!!
    • JonWHut
      JonWHut LadyDraco

      Posted

      Hello,

      Thanks for your reply.

      My situation may be slightly different from many. I have had UC for around 6 years. I will ill initially and ended up in hospital at an out of hours doctors on a sat morning. They kept me and and run some tests and confirmed i had UC. Looking back and knowing what I know now, I did show some very mild symptons before this, but these were very mild.

      I was kept in for 10 days and pumped with different drugs to quell the symptons. This seemed to be working, but the the Tuesday night - the day before I was being let home - my temp spiked and I was blue lighted over to a larger hospital for an emergency op to remove my entire colon leaving me with a stoma. This came completely out of the blue for me!

      Just over a year later I had it all plumbed back together to the rectum with no j-pouch. Apparently this was pretty standard at the time, or so Ive been told.

      All was fine, but for the last 18mths to 2 years I've been suffering from Proctitis of the stump. Tried all options, but none were working, so its a perm stoma for me...a relief for sure! 15-20 BM a day, up 4 or 5 times at night and not making it in time, even when in the house has taken its toll on me and I'm nearly broken!

      For me this is the only and the best option...I do know more now that I did at the start, but then I had no time to prepare as I didnt know I had it...

  • LadyDraco
    LadyDraco JonWHut

    Posted

    Seems like you've had some really unusual experiences! How did you go from not knowing you HAD UC, to having your entire colon removed sometime in a 10-day period?!? Something physically profound must have happened. It doesn't sound like you were a frequent flyer at the hospital? What was so scary to the Doctors that your colon had to come out so fast?

    It sure sounds like you're ready to be done with the suffering. I certainly can understand that. When I first became ill, my colon became badly ulcerated and infected. I was having the 15- 20 BMs a day, having "accidents", especially in bed, which I'm sure was SO pleasant for my husband!!! Are you married/partnered, if so are they supportive? I found myself pumped full of meds and "stuff". Finally, large doses of Asacol with alternating Vancomycin/Flagyl long-term, plus boat loads of yogurt stabilized things. Questran made me horribly toxic. Yogurt enemas in the hospital? Pretty much no response. Anyway. I had months trying to wean off the vanco/flagyl. No one suggested removing anything! When I felt like a guy with a blow torch was permanently affixed to the "exit", I might have welcomed the conversation! I can understand how you would look forward to it!

    Again, hope you get every relief you are seeking.

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