21years post illiostomy and now require surgery to remove final 7 inches of colon and rectum removed due to Ulcerative Colitis. Anyone had this done? Tips? Pros and cons. I am really scared.
I'm with you! Total proctocolectomy for me in 2 weeks. My Crohn's disease has continually progressed despite a battery of medications, so I'm at the point where I'm ready to get radical...
Please don't be scared. We got this! 😊
After fighting a colectomy for years despite severe ulcerative colitis, I finally elected surgery after colon cancer was detected. I decided to go with the total procto colectomy to avoid some of the potential complications of the alternatives down the road. The end ileostomy takes some getting used to, but the additional piece of the surgery has been uneventful and I have no regrets. I had more trouble with the temporary
post-op abdominal drain than my "barbie butt "
Colleen Young, Connect Director | @colleenyoung | Oct 1, 2023
Hi @cepps and @marco789, I hope you saw the helpful posts from @hardingv and @tdt who are ready to answer your questions and share their experiences with total proctocolectomy.
How are you doing as you prepare for surgery? Any questions?
After fighting a colectomy for years despite severe ulcerative colitis, I finally elected surgery after colon cancer was detected. I decided to go with the total procto colectomy to avoid some of the potential complications of the alternatives down the road. The end ileostomy takes some getting used to, but the additional piece of the surgery has been uneventful and I have no regrets. I had more trouble with the temporary
post-op abdominal drain than my "barbie butt "
Thank you, my friend. My Proctocolectomy is now in 2 days, and I'm nervous as heck. One difference though: I think I'll go with "GI Joe butt".
I'm trying to have as much fun with this as I can, in hopes to relieve some anxiety 🙂
Don't be scared. Easy to say. I've had Crohn's since 1968. Two resections and Gall Bladder removal. About three years ago I developed Diverticulitis. It got so bad that I made the decision to have my Colon removed in March of 23. I'm still in the process of learning to live without a colon. POSITIVE EFFECTS: NO PAIN, NO PAIN, NO PAIN. Its like a miracle. I had pain every day. My quality of life has changed for the better. I've been able to go fishing again and do other things without running to the bathroom. My entire Colon was removed and Rectum Stapled. I change my bag every three days. You will be fine.
Thank you, my friend. My Proctocolectomy is now in 2 days, and I'm nervous as heck. One difference though: I think I'll go with "GI Joe butt".
I'm trying to have as much fun with this as I can, in hopes to relieve some anxiety 🙂
I wish you all the best. Something I heard early on is that many (but not all) people find it easier to accept if you name your stoma.
Mine is Fifi La Fume, a descendant of the Tiny Toons cartoon character, with lots of energy and the occasional stink. If nothing else, an internet search for names people have chosen can be highly entertaining. : )
Had both my colon nand rectum removed. Please get a detailed post operation guidance, such as diet, will you require pelvic floor physical therapy, medications. I have been periodically on medications to relieve the pain and the rectal area pressure from time to time.
I am one of those people who have also had their anus removed. Still experiencing pain and discomfort, which I believe was caused by the procedure. I am currently under the care of Pelvic Floor Doctor attempting to solve the pain and discomfort.
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I'm with you! Total proctocolectomy for me in 2 weeks. My Crohn's disease has continually progressed despite a battery of medications, so I'm at the point where I'm ready to get radical...
Please don't be scared. We got this! 😊
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Helpful -
Hug
2 ReactionsI had that done first surgery took 7 hours 3 years ago 2nd surgery to take remainder took 2 hours last January. Doing fine any specific questions?
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4 ReactionsAfter fighting a colectomy for years despite severe ulcerative colitis, I finally elected surgery after colon cancer was detected. I decided to go with the total procto colectomy to avoid some of the potential complications of the alternatives down the road. The end ileostomy takes some getting used to, but the additional piece of the surgery has been uneventful and I have no regrets. I had more trouble with the temporary
post-op abdominal drain than my "barbie butt "
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Like -
Helpful -
Hug
2 ReactionsHi @cepps and @marco789, I hope you saw the helpful posts from @hardingv and @tdt who are ready to answer your questions and share their experiences with total proctocolectomy.
How are you doing as you prepare for surgery? Any questions?
-
Like -
Helpful -
Hug
3 ReactionsThank you, my friend. My Proctocolectomy is now in 2 days, and I'm nervous as heck. One difference though: I think I'll go with "GI Joe butt".
I'm trying to have as much fun with this as I can, in hopes to relieve some anxiety 🙂
-
Like -
Helpful -
Hug
3 ReactionsDon't be scared. Easy to say. I've had Crohn's since 1968. Two resections and Gall Bladder removal. About three years ago I developed Diverticulitis. It got so bad that I made the decision to have my Colon removed in March of 23. I'm still in the process of learning to live without a colon. POSITIVE EFFECTS: NO PAIN, NO PAIN, NO PAIN. Its like a miracle. I had pain every day. My quality of life has changed for the better. I've been able to go fishing again and do other things without running to the bathroom. My entire Colon was removed and Rectum Stapled. I change my bag every three days. You will be fine.
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Like -
Helpful -
Hug
8 Reactions(trying again, I think I lost prior draft?)
I wish you all the best. Something I heard early on is that many (but not all) people find it easier to accept if you name your stoma.
Mine is Fifi La Fume, a descendant of the Tiny Toons cartoon character, with lots of energy and the occasional stink. If nothing else, an internet search for names people have chosen can be highly entertaining. : )
-
Like -
Helpful -
Hug
6 ReactionsHad both my colon nand rectum removed. Please get a detailed post operation guidance, such as diet, will you require pelvic floor physical therapy, medications. I have been periodically on medications to relieve the pain and the rectal area pressure from time to time.
-
Like -
Helpful -
Hug
1 ReactionWhen is your surgery?
I am one of those people who have also had their anus removed. Still experiencing pain and discomfort, which I believe was caused by the procedure. I am currently under the care of Pelvic Floor Doctor attempting to solve the pain and discomfort.