Advice Needed on Barbie Butt Surgery Decision

So, I'm in between. My surgeon says yes, I will need the surgery, but there is a possibility of losing bladder control or sexual sensations. I'm 34 and still wanting to have kids. I currently have blood and mucus that comes out once a day or more. They stated I still have UC in my rectum, and that's why I would need the surgery, but I am not sure if that's what I want to do with the possibilities of losing those things. I have a lot of pain in that area. I have tried the medication for it, but it has not helped; it actually made it worse. I feel stuck trying to figure out this decision and have no one to really talk to about this kind of stuff. My husband is amazing, but he just does not have anything like this.

Can I suggest you have a child and then go for the Barbie butt? Just a thought.

IGGIE

Hello, and welcome.

You are 5 months into the ileo. And your concerns warrant investigation.

How long have you had UC?

Usually, as an emergency situation, they only remove the diseased colon. This happened to me and yet still bled out the butt hole. Mucus was disgusting and embarrassing. The doctors felt it would pass and improve. Duh. It didn't.

I too had UC in the rectum. Having it for 40 years took a toll on the body.

6 years later, they decided rectum, anus, and Ken butt surgery was needed. I had it done 2 years ago.

And yes, surprise! Peeing and having sex had changed dramatically. There's a pill for improving peeing, but nothing worked for libido.

In time, I was told it would improve.

Many women keep their rectum (as well as men) and decide to keep their butt hole free of surgery because of the fact doctors cut you up down there.

Speak to women who've had this done. It's in your best interest to research while you have time.

What meds, such as suppositories, did they offer?

Beach boy on here improved his (same as yours) situation with suppositories.

All I can say is I had mine stitched up around 35 years ago in my early 20s and never had any problems. I do pee more now; that's just down to old age and my testosterone injections from having both testicles removed. Take your time making your decision; there are always risks with all surgery, but almost all go without any problems.

Warrior… Good info for someone who is trying to make a major decision…

Pros and cons of this surgery need careful consideration - second opinions, in terms of surgeons, might be a consideration as well. A tough journey for you, but just posting on this site and reading about others in your same situation may be very helpful in making your decision… I hope so… Best wishes and hugs… jb

Words of Encouragement from Ostomy Advocates I Hollister

I did not have UC and have not had this surgery, but I had a total pelvic exenteration surgery that makes a mess of your pelvis.

When they say you could lose bladder control and sexual sensations, that means you are risking muscle and nerve control in your pelvis.

That does not sound promising for having a baby. I'd think you could still get pregnant and carry a child to term but might need a C-section to deliver.

This is an excruciating choice. Be sure to get a second or even a third opinion. You want to be sure that you've explored all options.

And as IGGIE said, consider whether you can wait. Only you know if your situation is livable or not.

In the end, you will benefit from the surgery. It is merely a matter of timing. How long do you want to live like this?

I just went through the BB surgery. It's my fourth surgery, and it put me down longer than I thought. It was worth it, though. If you go to a surgeon you trust, the percentage of worrying about your bladder and having (great) sex/kids decreases, and you're better in the end. Less pain and fatigue to deal with.

I'm right there with you, at least the part about the Barbie butt. I'm old, had kids, and got UC later in life, I guess after diverticulitis. Doc wanted to wait till I got stronger to cut the stump out; that was 12.5.22. It's weird to wear pads occasionally for the mucus; don't know why sometimes it's worse than other times. When there's a trace of blood, I use the mesalamine suppositories. I was led to believe that even after that surgery, I'd still have UC! I'm fairly adjusted, eat almost everything, even had mushroom ravioli yesterday! I'm a lifelong vegetarian, so meat didn't cause this! Sorry I didn't see when you got your ileostomy; they do take time to get used to! I think you should go ahead, have a baby/babies, and if you still need the surgery after, do it.

I just don't like it. It says to avoid the sun! I live in the desert!

Is your ileo temporary? I ask because my UC/Crohn's was primarily in my rectal-sigmoid colon, and after my ostomy surgery in December last year, my inflammation in the rectum is gone. My ostomy is temporary, and now my inflammation has migrated to the transverse colon, which is not uncommon for ostomates. I have been on mesalamines and azathioprine since '09 and added Humira in '12. The Humira has since stopped working well, and I'll be starting Remicade infusions in October after a surgery to repair a ureteral stricture. I've done the suppositories and enemas, and they didn't do much for me. It may just be that you need more time to heal before you see a reduction in inflammation. We all heal at different rates. Definitely get second and/or third opinions. See if opting to have kids first is an option for you. This is definitely a decision you, your GI team, and gyne teams need to make together.

I had the BB butt surgery for the same reasons as you; the UC was still present. It really helped, as you don't realize how ill you are feeling now with the UC still being present. Once the UC has gone, the inflammation in your body/blood is greatly reduced. I felt magically lighter; it is the only way I can describe it. I have had no problems with my bladder; in fact, I didn't know it was a concern, as it was never discussed with me. I have only had one partner to be intimate with in the 14 years, and I had no problems there either. It's the fatigue that was a problem in our relationship, but I had the fatigue before the op. So the operations hadn't caused the fatigue.

From what I understand, and I may be wrong as I had my surgery in 2011, is that your stoma will adapt to you being pregnant. The removal of so much intestine gives extra space in the body for your pregnancy and the stoma to exist. I may be wrong, but I am pretty sure that was the advice I was given.

Hope this gives you food for thought. x x Please try not to worry too much.

Sarah

I hear you, marecat. How you described things is how I was prior to my BB xxxx.

The surgery you are considering has the potential for numerous complications and should not be entered into lightly. Fifteen years post-radiation, I developed a rectal cyst that exploded, spreading bacteria everywhere. After the infection was brought under control and I received an ostomy, my surgeon recommended I have my entire colon and rectum removed to stop reinfecting the cyst area. After going over the risks, it was obvious I needed a surgeon who did this type of surgery often. Both my local surgeon and primary doctor searched the data available to them on surgeons who specialized in colon and rectum removal. The search came down to three names, with two in New York and one in Los Angeles. For the next month, I interviewed all three surgeons and settled on Dr. Kaiser at the City of Hope in Duarte, CA. I suggest you take the time to research who you want to do your procedure, and while you are interviewing them, make sure they can handle your concerns to the best of their ability. Never enter surgery unless you know who is looking down on you while you are lying there, putting your life in their hands. Don't be afraid of the surgery; it's a lifesaver.

Rick

The problem with using the colon as a substitute for the rectum is that the rectum's walls are designed to stretch to accommodate stool, and specialized nerves signal the brain when it's full, creating the urge to defecate at a socially convenient time. The colon gradually dilates and stretches over time, attempting to form a new rectum (neorectum) — this is the body's way of compensating when the colon is directly connected to the anus. The colon does its best, but it is no rectum. This works best if you have only part of your rectum removed. With no rectum, there is no chance of this working, and you are left with the following symptoms: frequency and urgency; clustering; incomplete evacuation; and incontinence.

Sometimes surgeons can construct a colonic J-pouch, which is a small reservoir made from the colon itself, to better mimic the original rectum. This may be what you had. The neorectum is the body's adaptation. Either way, without any rectum, there is no hope for very manageable bowel movements. Your surgeon should have explained this to you. If he attempted to explain and you didn't fully comprehend how limited the reconnection would be, that's understandable in these stressful situations. But if he did not explain the limitations of the reconnection, I would not let him perform additional surgeries on me.

When I had my colon removed, I made the decision to have the rectum removed as well. The doctor had advised me that there was a possibility of cancer in the rectal stub later on, and that was enough for me to decide to have it done. Luckily, I did not have any nerve damage and no sex-related issues. At the time I had my surgery, I was in so much pain I was willing to let them do whatever it took to make it stop. I would research the doctor well to be sure they have had a lot of experience in this type of surgery. That should improve your odds of having the best outcome possible.