UC back in anus - Response/New Q

Hey guys - wanted to add to this thread and also ask about my similar situation - so I made a new post.

I had colectomy in July with end ileo.
I decided I did not want to try a jpouch and wanted sewn shut/barbie butt.

In august my UC started coming back to remaining 19cm of colon and rectum.
It's done nothing but get worse and worse. Mucous at every bathroom trip - pressure/pain - increasing blood over time, increasing amount of mucous and even had a few accidents.

Met with new surgeon (as mine is retiring and he wants me to have a surgeon that knows my story for any future procedures) and she reiterated what my surgeon said - they were uncomfortable at my age to remove all possibility of one day being reconnected.
We compromised on a decision and decided next month I will have rest of colon and rectum removed.
Closing me up right behind the internal sphincter muscles.
Of course - looking at a picture of the rectum/anus I realize now this means I will be left with a sliver of rectum... a tiny rectal cuff.
I asked her if she was planning to do a mucous-ectomy or whatever its called when you scrape the cuff of its mucosal layer. She said it is not standard and no she wouldnt be.

I havent really thought about it since. Having to deal with the recovery of full Barbie Butt sounds so long and daunting! My husband (who is totally on board with permanent ileostomy) was also happier with the idea of being sewn shut internally.

After reading this post and the more I think about it - maybe this ISNT the best idea. Obviously my UC is very aggressive - I was diagnosed almost 1 year exactly before having my colon removed. I only had a few UC free weeks before it's come back in my remaining parts.

I have a hard time believing I WONT have rectal cuff issues or anus issues I guess too.

I realize percentage wise - leaving the tiny sliver of rectal cuff means not a good chance you will have issues in it - but the percentage of people having issues in their remaining rectum after colectomy also isnt that high - and I've been having severe issues now!

So what - I'd get another good month after dealing with another major surgery - and then have to go in for another to get the Barbie Butt ??

I also realize those of us with UC have a negative outlook on probability of the Worst Case Scenario happening to us... but I HAVE BEEN an example of worst case scenario from the start!

So... I dunno...
What do you guys think??

Boo hoo. I knew there was a reason you were so quiet. Hoped u were ok. I understand the worse case concept, truly. I am too new to advise, but I feel your pain. My daughter has always had terrible rectum involvement, and is still taking Canasa. Never ending story.... Hugs!

I agree with Pluot. From reading this forum, it seems there's particular pressure applied to young women by surgeons to go for a j pouch or the possibility of a j pouch. I think it's based on the idea that you're less attractive with a bag and that that should trump any reasons why you might prefer a permanent ostomy. It's concerning when a colo-rectal surgeon has this bias about the possibility of quality of life with an ostomy bag.

That said, of course there are good reasons to leave open the possibility of a reversal. But lots of people with UC have chosen the permanent ostomy for lots of reasons. It's all your (difficult) choice.

I ditto the above responses. You know how you feel. If you want the end ileo, make sure you have a surgeon who supports your decision. Battling this disease is very difficult to say the least. No one wants to go through surgery only to have the disease return in an existing portion of the colon. Is it a definite that you have UC and not Crohn's? When I told my former GI doctor I was going through with surgery he said, "Well, what happens if it returns in your small intestine?" That meant he misdiagnosed me for the twelve years he treated me???? I doubt it, he just wanted me to keep coming to him and using me as a guinea pig. I was an old lady of 63 when I had my operation and had no qualms about having an end ileo, but can sympathize with young people who do not want the "bag". However, that being said, if you have no problem with the idea of having the end ileo....make sure your wishes are honored.

My first surgeon - the head of colorectal at University of Wisconsin Health Hospital seemed much more adamant that I should try the jpouch.

My new surgeon (a younger woman) understood my reasoning and didn't push it. She definitely reiterated that it was my previous surgeons wishes that I keep the anus.

I think I will email her and talk with her more about it... maybe try to set a phone conversation.
I also need to talk to my husband more about it too. I am set on having my bag forever. And I'm okay with that.

Also - yes I had diseased rectum. Fo sho. Luckily with no food passing through it after surgery - things were much better. But then ramped up. My body is having fun trying to attack its remaining parts - thats for sure. I think it's trying to show me who's boss despite my having removed its favorite target.
I also have guttate psoriasis - no issues in the last 4+ years and am starting to have a flare up of that. Body is picking fights!! Stupid auto-immune.

just read thru this- I agree, you need to state to your surgeon that you wish to have the entire rectum, & possibly even anus, removed- she should be amenable to that. If not, look for another, more experienced, surgeon. As far as healing time goes- you can't base it on what you read- every single person has an entirely different experienc. Before mine, I was ready to expect anything from 2-3 years to a quick 4-6 week healing time. There's really no way to tell. I conisder myself pretty lucky, in that it took 6 months to heal up fully, but I had next to no problems while it healed. For you, it really sounds as if the best scenario is to get rid of any/all parts that UC may return in.

The reason the head of colorectal wanted to keep the sphincter muscles was for future abilities in surgery. He knew I wanted to get rid of it all, but he felt keeping the sphincter muscles intact atleast set me up for advancements in surgery in the future of being reconnected.

seriously - he tried talking me out of permanent ileo by bringing up arthritis in old age. lol. he was really grasping at straws...

I wonder if he meant that later in life, with arthritis, it may be more difficult to manage with things like emptying and pouch changes, etc.

      Oh..ok.  Well, my arthritis is mostly in my hips, legs, arms.  My fingers seem to be ok.   Weird huh?