Hi All. I am new to the site and this is my first time posting.....I really need some guidance.

I am booked for the Barbie Butt Sx at the end of Oct. I was diagnosed with UC in 2007 and since then it has been an incredibly long, rough and complicated road (I will spare you all the details). When my surgical journey began in 2011 with my first stoma there was no question I would be reconnected - I even was for a while. However, in 2014, during a life saving emergency surgery while I was over 7 months pregnant I was reverted back to an ostomy and my j-pouch was “preserved”. Since that time I have continued to have numerous complications, recurring divergent pouchitis, almost constant anal leakage/discharge, constant rectal pressure, frequent intense rectal spasms, and very high and acidic output due to how high into my small intestine the stoma now sits (this is my 4th stoma). I recently realized/accepted that reconnection would never be possible (I also have 2 almost healed fistulas) SO I booked the Barbie Butt thinking it was my only other option - I figured that they should take it all of it seeing as I don’t need it BUT now I have questions and my surgeon is on holiday.

During my surgery they will also be moving my stoma and “redoing it” due to its less than ideal current placement, a recurring peri-stomal abscess and a small hernia. So I will have the same vertical abdominal wound as my previous surgeries, a new stoma, a closed up stoma wound (I’m familiar with all these wounds and what they entail), and the Barbie butt wounds.

I have been researching what to expect from the BB surgery and I can honestly say that I did not realize how intense this was going to be - I am absolutely terrified. I now have a 3 year old daughter and the idea of not being able to bend, lift or sit for 3 months is really scaring me. Even though my Mom (who is also a critical care nurse - thank god) is moving in for 2 months, at the moment I can’t even fathom how I will mentally manage all of this.

I guess my question has become ..... do I need to endure so much? Do I have to get everything removed - dormant j-pouch, rectum and anus? Does anyone out there have a similar story and know why I need to get everything taken out?  Wouldn’t taking the j-pouch solve the pain and leakage etc problems? I feel so naive and confused. Please help!

Original Post

I don’t think removal of the J pouch will take care of everything. If they remove the J pouch, do they just reconnect intestine post stoma? If so, I am guessing you would still have some mucus production. And mucus production leads to all that annoying discharge/pressure feelings. I just briefly posted about my J pouch removal and from the little information I have come across, it sounds like the Barbie butt can either be done internally (so your butt looks the same from the outside) or externally so it is like a butt hole never existed. When I had my surgery, I just assumed it would be done externally. My surgeon did it internally and it has been the best thing ever! 3 weeks out and I am able to sit only on a towel on my toilet seat to put a new ostomy appliance on my stoma. I would be curious to see if any other now Barbie butts could comment on how their butt was sewn up. Not sure if either way makes a difference, but the best experience from my surgery so far has been my Barbie butt. I never thought I would be typing that!

Wow! Thank you for your reply. I can’t tell you what a relief it is to hear how happy you are with the BB already.

I’m just so tired of all pain and gross leaking and always having to wear a pad and literally running to the washroom (when I thought an ostomy was supposed to fix that), and the chronic fatigue (fatigue isn’t even the right word for how drained I always feel).  I got worried I was agreeing to something completely insane just to make it all go away. Plus cutting out body parts hasn’t seemed to work for me yet LOL I was scared I would go through all of this physical and mental pain, throw my family into turmoil, and confuse and scare my daughter just to basically trade to some new awfulness.... So hearing your truth is very much appreciated and I thank you. 

LORI726 posted:

I don’t think removal of the J pouch will take care of everything. If they remove the J pouch, do they just reconnect intestine post stoma? If so, I am guessing you would still have some mucus production. And mucus production leads to all that annoying discharge/pressure feelings. I just briefly posted about my J pouch removal and from the little information I have come across, it sounds like the Barbie butt can either be done internally (so your butt looks the same from the outside) or externally so it is like a butt hole never existed. When I had my surgery, I just assumed it would be done externally. My surgeon did it internally and it has been the best thing ever! 3 weeks out and I am able to sit only on a towel on my toilet seat to put a new ostomy appliance on my stoma. I would be curious to see if any other now Barbie butts could comment on how their butt was sewn up. Not sure if either way makes a difference, but the best experience from my surgery so far has been my Barbie butt. I never thought I would be typing that!

I just replied to your post about bb. 

I had my pouch removed almost 4 years ago. 

My surgeon left everything else intact. Just sewing me shut from the inside. I still have my anus. Spinchter muscle. And a short one inch anal canal that is not hooked to anything. It causes no problem.  I get mucous in it but it doesn't come out. Like a sweat Inside. Minor. 

Instead of removing and dealing with all that comes with it maybe. Maybe. They could just sew you up from the inside like she did me. I don't know. Maybe not everyone can be done like mine. 

In fact she said if I wanted to try the pouch again everything is still there to try. I'm not going to. But it's an option.  I will not be doing a pouch again. 

Richard. 

Interesting. Somehow I’ve never heard of this internal closure. I wonder if she does those and if not why. I will add that to my list of questions for her (whenever her vacation is over lol). Thx!

Jayda, I also had j-pouch removal with internally sewn BB and a permanent ostomy almost five years ago. You will hear differing accounts regarding BB healing but let me be another one who says that it is not as bad as you may be imagining. I took my pain meds for several weeks but was able to sit, albeit slightly on my side, about a week after surgery. Yes, the surgery itself took a lot out of me but I tried to be kind to myself and have realistic expectations. Use your mom’s help and go slowly. Good luck!

Thank you! This response came to me at a very good time. I had gotten myself all worked up and scared again, so thank you for sharing your opinion. 

I was terrified, too. I gave my decision a full year before I acted on it just to make sure. I got my quality of life back and  I’ve never regretted making that move.

You guys were so right! It was tough immediately after the surgery. I actually had “emergency” surgery 4 days after the original surgery for an internal bowel leakage. Then a subsequent abscess (which was to be expected) but everything healed much faster than I expected and “sitting” up was doable from day 1. I sat on my sides of course (like people suggested) but I was convinced I would be laying like I was in a coffin for 6 weeks. I am even up and out running errands and driving.

 

So in summary, early days were more painful than I expected, but on my stomach and not my backside like I expected. Then I healed faster than I thought. Now I just need to gain some weight. 

I can’t thank everyone enough for all the kindness and support. I truly was terrified to go for this surgery even though I knew I needed it and it was you guys that got me in there.  It truly is amazing.


Thank you all!

Jayda, I’m sorry you had a few bumps post surgery but it sounds like you’re coming along. It only gets easier to get the hang of this new normal!

I'm jealous as my Barbie Butt was painful for months! I had to sit on heavy duty medical air butt cushions when driving too.  Sorry you had to go thru all that other stuff as if the surgery wasn't hard enough on you.

Don't worry, the weight will find you 

Yes. 

Unfortunately the weight will find you. 

And it will go where you don't want it if you are lazy like me. Lol. 

I was down to skin and bone. I was skinny to begin with all my life. But then it went to the extreme. (128 pounds).  I lost 50 pounds. I looked like death walking. Felt like it too. That's all in the past. 

Now I'm back up but still short of my normal weight and being a male it's all where it should not be. 

I should work out. But I did bring up that I'm lazy. 

Richard. 

So glad it is over Jayda! It sounds like everyone or almost everyone goes thru some sort of post op problem but you sound like you’re definitely on the right track! Hope you continue to enjoy your new buttless life!!

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