Experiences with Barbie Butt/Proctectomy surgery?

Hello everyone, I hope you all are doing well! I had my colon removed in 2009, but they left my rectum and a very small portion of colon in hopes to maybe reconnect. Unfortunately, that's not going to be possible and I've had a bad Crohn's flare in that section for the last year. I have one more medication to try before my doctor says I will need to have it removed. I'm trying to avoid another surgery, as I'm a 19-year-old guy in college and have heard it can be a riskier surgery for men. Has anyone had the Barbie Butt/Proctectomy surgery, and what were your experiences like? Hospital time? Recovery time? Anything else I should know? Thank you, everyone!

Why are they saying you have to have the rectum removed? I have had Crohn's most of my life since the age of 23, over 30 years. It started in my rectum. I have flares, some really big ones that have lasted for years, others small, but the doctors never suggested removing my rectum. It has moved up my colon and I have a colostomy. My doctor told me that surgery does not stop the disease, it just moves to other places in your body.

Get a second opinion. You are very young and have a lot of years ahead.

Humeria has been my lifesaver.

Hi Ccojei,

Hi, I haven't had Crohn's. I had colorectal cancer. I had a large mass right at my anus, so there was no sphincter muscle to save or reconnect. They removed it as well as some large intestines. (I don't know what all?) It would have healed, I think, in a reasonable time normally, but I had five and a half weeks of radiation and it destroyed flesh and got infected. The surgeon had to go back and cut my butt open to heal, building up layers of flesh after the infection was finally gone. In my case, it took about eight months.

I'm thinking yours might be possibly a few months? I'm only guessing because I haven't experienced the normal healthy healing time. I'm sure someone will be able to give you a more accurate answer. Mine was more of a worst-case scenario.

I'm sorry you have to have another surgery, but I think you will be better before you know it. Keep us updated. Many of us have the Barbie/Ken butt. ..mtnman.

Mine was done all at once. If it is doing nothing and cannot be reconnected, why keep it? I do not remember times or stuff, but do not wear too thick a pad as it puts pressure on the incision.

Men... I think he wants to know if he can still get an erection after this type of surgery... he states that the surgery is risky for men. Being a young man, this is a very important factor. Even if he does not use his anus anymore, it could be supporting other parts of the body.

If it is a straightforward surgery, everything will be fine. They do mess around with a lot of stuff down there, but mine still works.

Hi; ccojei

I have had everything south of the small intestine removed and have no problems with what you are enquiring about, surgeons will advise of the risk of possible nerve damage down there just as they will the risk from anesthetic, don't overthink it they are just giving you general information even if it is very small, I'm sure you will be fine. I think it took me a good two to three months to recover but I wasn't full strength going in from just having part one of the three-step process done a few months before.

Take care.

Axl

I had my ileostomy and complete butt removal at the same time. The butt took longer to heal as the empty cavity must fully heal. I just leaned on a hip to avoid the pressure as I sat, but it was the best thing to be done. Don't stress over it... took my new butt about 2 months to heal, even though there were periods of spasms afterwards. You'll thank yourself once healed. Good luck.

Hi CC, I've had my ileo for 35 years now. I had the whole works removed in the first surgery, and it took about 6 months before I was up to anything, but I was really sick and run down from Crohn's. The surgeon warned me and my wife that there's a possibility of not being able to perform due to all the nerves in that area, but I don't have any issues. Good luck.

Hi CC,

There are many of us in with Barbie/Ken Butts. I had a neuroendocrine tumor just inside the rectum. It was not colorectal but presented there which is a VERY rare occurrence. I did have chemo and the tumor was completely gone but because my type of cancer was so aggressive they needed to do surgery. I had had chemo and radiation 13 years prior for cervical cancer so that radiation destroyed so much and the rectal wall, it was compromised and would not have withstood radiation there or surgery without removal of the whole thing. So it was all done at the same time. Removal of the area where the tumor was for a cancer-free margin, the Barbie Butt made from removing part of my six-pack in my abdominal structure, the Ostomy, and they removed my appendix while they were in there. I was in the hospital for 7 days. It was very touchy with sitting but not crazy painful. Hardest part was getting into a car. It did not help to have a Foley and drainage cath hanging off of you for weeks afterward. At first, it feels as if your underwear is up your butt! More like a bunch of underwear! Lol It does eventually become a part of your body and you don't even think about it anymore. Recovery time was probably a minimum of 2 months for me but then I had many things to recover from. That was when all the tubes and staples came out. It was almost immediate freedom. Had I worked, I would have felt able to go back. I did resume my life at that point and moved on perfecting my Ostomy care. You probably already have all of that under control so your recoup time should be less than mine.

Good luck in your decision! I too recommend a second opinion. It never hurts with such an important surgery!

Hi ccojei - I've had an ileostomy for over 20 years due to ulcerative colitis, and also had my surgery in Michigan (LOL). They performed a total proctocolectomy, so they removed the rectum, sewed it all up, and gave me a Ken butt, I guess LOL. So, to your concerns - prior to the surgery, they advised me to freeze a semen sample "just in case" as I was in my early 20s, newly married, and wanted a family. That effort was just in case as they said they're dealing with an area of the body where lots of important nerves run, and despite all their preparation to be careful during the surgery, something could always happen. Fortunately, things worked out fine as expected - and also, I've never had performance issues after as well, so that should not be a big concern. You will have a drain for a week or so and will want to sit carefully until that area is fully healed. Forget about sitting on a hard surface in the future - like a bike seat or anything like a metal chair as for me that is pretty uncomfortable even today. Also, you might get some ghost sensations once in a great while where you feel like you have the urgency to do an old school poop LOL but obviously you can't. The pros are good here IMO - removing that unused part of the body to avoid medical complications in the future. Good luck to you and Go Blue.

Hi, 

I just wanted to add, when you get back to sitting, ask your surgeon and wound care nurse to set you up with an air waffle cushion. Out of all the cushions I tried, that was the most comfortable in the long run. ...mtnman. 

Cc, I am in the same boat as you right now. Considering a proctectomy next year but with my illness, I doubt I may have it.

U and I have a stump. We both were told of a possible reconnect. The rectum has Crohn's. No reconnect possible. It should come out. Why? Cancer. Potential site. And it leaks. Leaks mucus. Initially, it was bloody discharge.. which has subsided due to prednisone. I am sure you are on it now. Just don't be on it for 35 yrs. That alone brings its own medical issues I am facing today. I know you're trying to control whatever issues u have with the rectum with oral meds or self-injection type meds up the butt... or biologicals.... for me, they all failed.

Don't lose faith. Something may work for you as I hope something will work for me without rectum removal.. but.. I am not that lucky these days. You can be optimistic. There are a lot of new meds out there.

You must also have complete faith in your surgeon. A good one. An experienced one for them nerves down there. I personally think it's a crap shoot. Some win, some don't. Again, your surgeon must know his shit.

Gosh 19? I got hit at 25 and have had every drug possible. Just don't ignore the fact u have it. Know what foods to eat. And get some good advice.. Let us all know how you're doing and what u decide.

As for Humira and other biologicals? They really messed me up but I think it was because I was so immune deficient. So I have nothing good to say about them. I was tainted.

And if you're concerned about getting it up or not, after removal, I was told by a female friend who dated a guy with rectal removed who just injected himself with (whatever it is) and and and.. well. Let's just say you couldn't wipe the smile off HER FACE. "There's a pill for that" you say? Doesn't even come close to this result. Stay strong. You will get your answers. Warrior.

I had my entire colon removed in an emergency surgery 2 years ago after what I thought was a very bad ulcerative colitis flare-up ended up being a perforated colon. I now have an ileostomy and things are going pretty smoothly except for a blockage (from a twisted peristomal hernia) that landed me back in the hospital. The dr. was able to unblock me without surgery by inserting a "foley" tube into my stoma. I still have my rectum, but my surgeon told me that my rectum will probably also have to be removed eventually because people without a colon are very prone to getting rectal cancer. As a precaution, I must have an annual "pouchoscopy" scoping procedure (which is basically a colonoscopy for people without a colon) which monitors my rectum for cancer. My surgeon also said that most people without colons end up having rectal issues like excessive leaking, bleeding and pain which makes them want to have their rectum removed. So, I'm crossing my fingers that doesn't happen to me; but if it does, I guess it will be time to discuss my rectum removal surgery. My surgeon said that he doesn't want to do unnecessary surgeries on me because my colon removal surgery was very complicated and my HUGE surgical wound (which was left open and had to be stuffed with sterile gauze by visiting nurses for months!) took a really long time to heal. To be honest, I'm really glad he's not scalpel happy. On the positive side of things, since my colon removal, I haven't had any UC issues at all, so on the face of things, it's looking like my surgery did stop my disease.