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Crohns and Total Proctocolectomy

Total Proctocolectomy

  • Straight connect - Happy with results (how long have you been connected?)

    Votes: 0 0.0%
  • Straight connect - Having lost of issues (please explain)

    Votes: 0 0.0%
  • Straight connect - Went back to ileostomy (please explain)

    Votes: 0 0.0%

  • Total voters
  • Poll closed .
My Daugther has a surgery scheduled for Dec 3rd. She currently has a failed pouch and Possibly Crohns and PSC, though her current diagnosis is still UC at the moment. Her jpouch has failed due to too much rectal cuff being left behind. The surgeons are suggesting to connect her small intestines to her rectum, also giving her a end ileostomy until I am ready or reconnect or am certain she can handle a takedown.

I have two choices permanent End ileostomy and keeping the rectum if possible.
Doing this straight connect (IRA/SIAA) no jpouch

Those whom have Crohns and a Colectomy what do you have and what made you come to the conclusion?
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Hi, so sorry to hear about your daughter. I had a subtotal colectomy which left me with an ileostomy and a mucous fistula, which was to allow an outlet for any output from the remaining bowel. The mucous fistula caused me a load of problems. It leaked both ways, a horrible smelly disgusting discharge. It was so difficult to manage. The ileostomy gave me relief from my Crohns symptoms but they were replaced by mucous fistula problems. I was so relieved to eventually have a proctectomy and be left permanently with an end ileostomy. I know many other people haven't had the problems I had with their mucous fistula, but my remaining bowel was very diseased. Also, I was very lucky in that I healed really well after the proctectomy. A relatively high percentage of crohns patients don't. It is such a difficult decision you have to make, I understand your reluctance to take away the option of a reconnection at some point. I hope I haven't added to your worries. Please feel free to ask me about anything, I will be happy to help if I can.

Connie x