I've had my end ileostomy for almost 2 years now. Originally I had planned to convert to a j-pouch (in 3 steps). Unfortunately, due to a blood clot and varices at the superior mesenteric vein surgeons tell me that it is too risky to operate near my small intestine. Almost a year ago I was advised to have the remaining rectum and anus removed with the butt sewn up. I have been putting off doing so, but am finally mentally ready to move ahead. I don't see the surgeon again until early November. In the meantime I have read everything on this site that I could find about Barbie/Ken butts. On another site I saw a post saying that female patients need to have the bladder and uterus "taped" in order to prevent them from falling into the hole left by the rectum. Another poster said that the surgeon used the grassilus muscle from the thigh to hold her vagina in place. Does this sound accurate? What other things should I be aware of? I am having a hard time finding info on the internet because I don't know the technical term for this surgery... when I type in "anus removal" I get a lot of hits for rectal cancer. Those sites tend to just say the butt is sewn up, but not much info on what to expect during the hospital stay, recovery, etc. Any comments, or responses would be greatly appreciated.

Just bumping this up as many people have read my request by there have been no answers to my questions. If you have any experience with this I would love to hear from you.

I had my rectum removed and was sewn up in May when my j-pouch was removed. This is not as hard to adjust to as it might sound. I didn't have any muscle grafts or anything. However, I have crohns with perianal fistulas and so my bum didn't heal properly so after the fact they might do a graft to help the area heal...this is just me, I don't think that this happens to most people who have their rectum removed. I don't recall the recovery to be too dramatic. I sat on a butt pad for months! It takes a while to heal (even for regular people) because of the location of the wound. You really have to be up off your feet as much as possible. I didn't have anything "taped" as far as I know. and I say that because I have found in the past that surgeons do little things that they don't mention afterward. Those things may have been done with those specific patients because of what the surgeon found when they got in there.

Don't be concerned. The surgery is far from grueling. But being off your feet and having a butt pad is absolutely essential to getting healed up.
Best of luck, I hope you get all your questions answered.

Hi Janice,

No mention of other organs being involved in my j-pouch removal either. I did have MRSA when I had this surgery so had a lot of complications and I was re-hospitalised because all my wounds started to break down. However, I don't remember my anal wound being any more painful than the others. I just remember it being really uncomfortable while I still had the stitches in. Although I took a lot longer to heal than most because of the MRSA the anal wound really wasn't that bad compared to my other wounds.

Good luck and take care.

Shell

Hey Janice,

I too have a perm ileo and "barbie butt" - I think the medical term is a gluteal closure. I don't know if all surgeons do them the same way, but they take out the anus and rectum and then sew it from the inside and the outside. My doc did not do anything to any other organs - nor have I heard of that unless you have problems or involvement from other neighboring organs. It is a little painful, but mostly because of where it is. Once it heals, I promise you don't miss it one bit. No more butt burn or any other butt problems!

Feel free to PM me if you have any other specific questions or concerns.

-Mikaela

I appreciate your responses. I am apprehensive but with more information that has subsided some. Now that I have made up my mind to go ahead I wish I could get in to see the surgeon sooner than November, but I am told he is currently on sabbatical. At this point I don't want to start shopping for a new surgeon so I guess I will have to have patience.