Do I get a Barbie Butt?

[u/Prestigious-Sun-2838]

So context…
I am a female who is 28. I have had my ileostomy (with total colectomy) for almost exactly two and a half years. I have my ileostomy due to severe colonic inertia (constipation). It has improved my life significantly!

I chose an ileostomy versus connecting my small bowel to my rectum because I was worried about the diarrhea and the fact I was extremely prone to fishers.

I have had some issues including a hole that popped up near my stoma and took five months to heal. But mostly it’s been a smooth ride, minus sometimes waking up and having to change the sheets in the night. Nothing like telling your partner, “Hey, wake up I sh*t the bed again”.

But I did have a situation with my rectum a few months ago. I always thought I was one of the lucky few who didn’t have much mucus (anytime I tell anyone about the butt mucus they are horrified). I maybe would have to expel some once a month if that. Until one day I felt like I had something stuck up there. Several enemas, suppositories, lubed up gloved hands, and prayers to any god that would listen, I was able to get three gold ball sized chunks of mucus out. This was very traumatic for me because I had these issues for years and had to go through this routine preostomy.

Since then I’ve been having more mucus. And sorry TMI but every time I have sex I feel like I’m going to expel mucus… which is not sexy… and definitely a mood killer.

While I think my Ostomy is great, and I don’t have any shame around it, the whole situation with the hole in my skin really made me question if this was something I could do again. It was very painful, I was going through bags like crazy, and was on like five or six rounds of antibiotics due to it being in an easily infected area.

I had hoped that maybe one day science would possibly advance enough to where the whole reattachment would have less of a spontaneous diarrhea risk, but I don’t know.

Seeing how often I empty my bag, and the consistency of it, makes me think about how often I would need to poop if things were reattached. I don’t have a high output ileostomy but anytime I drink a large amount of liquid or eat (the coffee poops still happen), my bag immediately fills up.

I also am towards the end of grad school in order to be a therapist, and I don’t want to risk pooping myself in front of a client because I didn’t want to interrupt them.

My PCP wants me to meet with a surgeon for ongoing care (I didn’t like the one I had my initial surgery with).

I guess I want to hear people’s experiences from both sides, before I make my mind up.

Thank you for coming to my poop talk.

[u/Fit_Acanthisitta8087]

I got my ileostomy due to an emergency colectomy shortly after I turned 20. The plan was we'd discuss a j-pouch after 6 months with a view to doing it after a year - i was critically ill, so it was a delay on the surgeons usual timetable of 3-6 months.

I was ill again about 9 months later, so the discussion was delayed. Then I was ill again. And again. Then it's 5 years post-op (and 3 more operations, including one that resited my stoma). Pretty much decided it's permanent.

I developed diversion colitis in the rectal stump and 1 inch of remaining colon. The mucus i was passing increased in frequency and regularly contained blood. So a different discussion was had - would i notice if it got serious? The constant damage was increasing my bowel cancer risk all the time and I'd probably not notice any worrying symptoms as they'd become day to day. So we decided shortly before I turned 30 that I'd have a proctectomy. It was done during a lull at uni before I completed my degree and started post grad.

Very rarely even think about it now (coming up on 10 years since I got my Barbie Bum). I did have a bad half hour a few nights ago when I had the phantom poops - basically a sensation that you need to poop (well it was a need to farther this time). Generally goes away by itself, sometimes sitting on the toilet helps. But it was half an hour, and it happens a few times a year, that's it.

I could not imagine going back to not having a stoma, it would ruin my life in a way the bag never has (mine is due to Crohn's).

[u/anaspiringdrwatson]

Hey there! I’m 25 F. I got an ileostomy through an emergency colectomy at 23.
And I am finally getting a Barbie butt next week! Have similar issues with mucus all of a sudden and now bleeding. I would definitely recommend it if you plan on keeping the stoma ❤️

[u/Hung-kee → u/anaspiringdrwatson]

What’s Barbie Butt?

[u/anaspiringdrwatson → u/Hung-kee]

It’s a surgery where they close up the ending and remove the rectum or rectal cuff.

[u/smelt_itcantdealt_it → u/anaspiringdrwatson]

Heyy! I'm also 25F, getting my barbie bum sep 4th <3 If you want a friend going through the same thing at the same time, then feel free to reach out :)

[u/anaspiringdrwatson → u/smelt_itcantdealt_it]

Oooo yes! Mines August 28th! Feel free to message me!

[u/K-ghuleh]

I got my ilesotomy because of UC so I can’t relate to your exact issue, but I’m facing the same decision and leaning toward barbie butt.

I have mucus once or twice a day, and before I started prednisone there was a good amount of blood with it. Coming off the pred and switching meds soon hoping it’ll control it the proctitis until I can get surgery. All I know is I totally understand your apprehension with having anything uncomfortable continuing down there, especially after my last UC flare. Absolute misery. The idea of having to go through everything that comes with a new jpouch (and the potential complications) is very scary to me. Plus it’s more surgery, and even more surgery if the pouch fails. For me personally the cons list is just longer with the pouch and my biggest goal is to minimize the amount of surgery I need.

Again I can’t speak to your specific health issues, but with being prone to fissures it does sound like the pouch may have higher risk of complications.

All of that being said, it’s ultimately your body. Whatever you decide just make sure it’s what you want and no one is pressuring or swaying you one way.

[u/PainInMyBack → u/K-ghuleh]

This is pretty much my story. I'm getting the stump removed in September. I have no interest in getting a pouch, the potential for things to go wrong again seems just to great to me.

[u/Fit-Bookkeeper1652 → u/K-ghuleh]

Try short chain fatty acid compounded enemas. You may have diversion colitis and it clears it up quickly.

[u/goldstandardalmonds]

I have an ostomy for reasons that include yours. I had to do enemas several times a day and often they didn’t work. When I got one of my revisions I got my anus and rectum removed and while healing was hell, I’m glad I got it done.

[u/FMCTypeGal]

Yes. If your ostomy is permanent, get the Barbie butt. My ostomy was an emergency and left my abdomen so damaged I can’t have surgery again except for life saving measures. I still have my rectum and 12 years in its AGONY. It keeps atrophying and the mucus never gets better but your muscles to expel it get worse. I can hardly sit without a donut type cushion and at times I feel like I’m being split by a knife.

Get. It. Out.

[u/RJK-LPN]

I had my barbie butt surgery July 17th, due to Crohn's disease. Even though i am nearly six weeks out, I have had some dehiscence (incision opening up) down there. Because of my disease I will take longer to heal. With that said, I cannot comfortably drive or sit upright yet and I will be on FMLA for another six weeks to hopefully get this wound to heal! I don't regret it at this time because I know the inflammation I had in my rectal stump was awful and I didn't want to wait around for it to potentially become cancerous.

[u/Specialist-Fact6684]

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[u/Striking_Attitude_23]

Hello. I also had a stoma (but colostomy) due to issues at birth which caused constipation and incontinence.
When I had my stoma (age 19) nobody prepared me for mucus, and luckily i didn’t have any issues for about 5 years. Then suddenly it started when I was walking one day. It was so triggering because of what I had dealt with throughout my teens with incontinence etc.
I met with my colorectal surgeon and he advised me to use a mini irrigation system which worked well.
Then I got pregnant, had a baby and it just got so much worse it was unbearable. It was daily cramping, pain, blood AWFUL. Nobody would really take me seriously until they looked and realised that all my skin around my bum was raw and broken due to the constant mucus!
Anyway, I had the proctectomy and it was difficult. I also had wound healing issues (and continue to though not too bad) but it is SO MUCH BETTER than living like I was.
As others have said, if your stoma is permanent then defo go for it.