Advice for Barbie Butt Surgery and Coping with Perma-C Ostomy

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5858
ShyIntrovert
Sep 09, 2018 3:37 pm

Sorry, this is so long but y'all are the only ones I have to talk about this to. I've had my loop sigmoid colostomy since 6/4/2018. I had a bit of mucus with my ileostomy 6 years ago, so I understand with a loop some stuff can pass to the rectum. Had a scare earlier, I hope not TMI, but I'm worried! I had a "lot" of mucus stool along with undigested food pass 2 times and both times it was a LOT!!!! I had a feeling this last 9th bottom fistula surgery had failed so I tried to prepare myself for the news. Saw my colorectal surgeon on 9/4/18, she confirmed my worries by saying there is nothing more she can do "down there". She is giving me until after the holidays to remove my rectum and make my colostomy permanent. Like I said, I was worried about that but to hear her say it just confirmed my worst fear. I know there are lots of people that have them and lead full lives, but until it's YOU, it's different, at least for me anyway. I have total fecal incontinence so I suspect that's why I've been messing myself at times with just a bit of mucus and poo. I can't feel it come out and I have NO sphincter control at all in my rectum. So either permanent colostomy or the constant worry of shitting my bed with no control, or diapers at 43!!! I'm sure someone here has the "Barbie Butt". She explained it would be a pretty big surgery. Any advice on recovery time, thoughts, or ways to help me try to cope?

Poobag17
Sep 09, 2018 5:49 pm

That was one of the main reasons I chose to have my surgery done, mind you it appears you're suffering a fair bit worse, but needless to say it's definitely nice to not have to worry about leaking out my arse anymore! I'm just over 4 months post-op, back to everything normal. Mine was an open surgery, as opposed to laparoscopically. Just how it goes. If and when you do it, I recommend Epsom salt baths to help your butt heal...as soon as you can, I heard about it after 4 weeks of real butt tenderness, and they made a huge difference.

Best wishes, and let me know if you have questions.

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SemiColon
Sep 11, 2018 11:02 pm

I'm getting ready to have my take-down surgery next Thursday, which will reverse the ileostomy. My surgeon has already warned me there may be "accidents" from time to time. But, I just read this and I'm wondering if it might help any of us now or in the future. It seems there is a series of 4 injections of something called Solesta (sounds like a sleep med!) and it supposedly reduces fecal incontinence by 50%, or so they claimed in their clinical trials. It sounds as though it's available now, and I intend to ask my surgeon about it this week.

Gemd
Sep 11, 2018 11:44 pm

I get my colon and rectum removed tomorrow...hello Barbie butt and ileostomy bag. Can't say I am excited but...at least the fecal incontinence will be gone so there's the silver lining for us both.

medic361
Sep 11, 2018 11:45 pm

I had a permanent colostomy with the Barbie butt. If it is a possibility, have it done using robotic surgery, that lessens recovery time. I am a firefighter and from surgery to return to work was six months, I was taking chemo during those six months also. Within 3 weeks of getting home, I was pain-free except for my bottom which took about 6 weeks to heal fully. If you have most of your colon, I would ask about irrigation which will give you back some control.

 
Living with Your Ostomy | Hollister
Pip65
Sep 11, 2018 11:53 pm

Yes, I know exactly how you feel.. I go to bed everything is fine, then it fills up and I am up and down constantly changing it.. After one appalling night when my partner was fast asleep, I had to change all the bed linen and was terrified he would wake up. Thankfully, he didn't, but it took almost an hour to change everything.. Since then, like you, sleep is very difficult.. But if I am having a bad time, I sleep with a towel under me. I have also found that supporting my abdomen with a pillow when I lie on my side and keeping it more in a set position reduces leaks massively.. It's very, very hard and I do empathize with you enormously.. The worst for me is when I am driving and it suddenly blows out..

Pip65
Sep 11, 2018 11:59 pm

I had sepsis after my colon burst open and was in a coma on life support with multiple organ failure. That was Nov 2016.. still have the bag and now 7 hernias.. They want to repair the hernias and reconnect in January, but I am terrified of everything going wrong, yet the hernias have to be repaired as they are very bad and I get into terrible pain.. V low about it all. Anyone had similar experiences or been through a reversal and reconnection with hernias who can offer any advice. I still have little energy and stamina and am still suffering from post-sepsis syndrome and PTSD... Thanks

Poobag17
Sep 12, 2018 12:00 am

Medic361 - That's awesome you're on here, I'm in the same line of work near Vancouver in Canada. Nice to see a fellow brother or sister in here!

Puppyluv56
Sep 12, 2018 12:27 am

Shy, they also told me mine was a huge surgery because they had to remove a rectal tumor that had grown into the vaginal wall, do the Barbie Butt and permanent colostomy and reconstruction surgery of the vaginal wall. They removed the muscle from my stomach, your 6-pack, mine is now a 3-pack! Lol

It was a huge surgery but the worst part was having the Foley and the two drainage tubes that I had to go home with. Was I in the hospital for 7 days and a week after release, the doctor removed the Foley and two weeks later the drainage tubes. After 6 weeks, the staples came out and once I got there, I was good. Now I am retired so I did not have to go to work and could rest when I needed. My surgery was April 15th this year and the only thing I have is the Barbie Butt sometimes feels like it is tearing if I move wrong. It is not, but the feeling is painful. Hope all goes well for you!

paulaAZ
Sep 12, 2018 3:40 am

I had a total proctocolectomy with permanent end ileostomy almost 3 years ago ... and of course that included a Barbie Butt. So I was able to get adjusted to everything at one time. The Barbie Butt has been no issue at all. What I would suggest is to get a waffle cushion (not a donut or anything like that) to sit on after surgery. I purchased mine at the manufacturer's website which is www.ehob.com but you can get them on Amazon and at Walmart. I got the portable sitz bath that you use on the toilet that was helpful, too. I drove 3 weeks after my surgery so obviously it was not that long of a recovery ... although there may be a twinge here and there for a while, maybe up to 6 months but nothing excruciating.

All that being said, like I said before, I had everything done at one time and I have no idea if having the surgery you are anticipating by itself makes a difference. Good luck!

medic361
Sep 12, 2018 3:54 pm

Also, good to see another brother firefighter!

sunasea
Sep 13, 2018 2:19 pm

I had a permanent colostomy 8 years ago due to stage 3 cancer. Surgery took 7 hours, in the hospital for 11 days, then 3 months to get back to running. Life is different after and sometimes sucks, but mostly great - comes down to what you individually choose to make of all this. Keep your chin up, smile, be happy to be alive. Live your life, there isn't much you can't do after surgery. Eat well, learn to listen to your own body, and cry when you have to.

Newstom
Sep 18, 2018 9:57 pm

What is a Barbie butt? How do I know if I have a hernia by my colostomy? I am too scared to have the take down surgery. I have a low pain tolerance and the surgeon said it is a bigger surgery than the first one when my intestines burst and it was emergency surgery. Also, the stoma seems to protrude or be a little bigger than it was. I wear a 6" ace bandage, cut into two, around my stomach to smooth out my clothes over the bag and the round ring from the plastic snap-on bag I wear. It's okay but not ideal. So, is the surgeon who I should be talking to about hernias, what kind of exercises I can do, etc.? I gained 23 lbs this past year and I've had my colostomy for over 2 years. He okayed me for the reversal but I don't know if it's more trouble than it's worth. Also, I am thinking the colostomy might be handier as I get much older; it's easy in the front. Thanks for any advice!

GrahamEatt
Oct 01, 2018 1:41 pm

What is it that you're having a problem with? You don't actually say. What are you doing all night and what's the accident? You shouldn't be going all night with proper management and a good seal, if you have a pouch. Let me know because I know I can help.

GrahamEatt
Oct 01, 2018 1:51 pm

An X-ray would show any hernias, for me an MRI was ideal. I think a hernia would give you pain just beneath your stoma.

If I was about 70 years old, I would choose not to have a reversal purely for old age convenience.

Subdermal fat around my stoma has never reduced and the surgeon won't do liposuction as it might damage the pouch seal.

Poobag17
Oct 02, 2018 4:12 am

They kept my stoma in the same spot. Yes, I did not have a hernia though, so I'm not sure how that would have affected things. Hernia aside, I don't know if it's common to move the stoma, let alone when a hernia is present. No clue how your surgeon will do it all, but it sounds like they've got a plan. Don't blame you for just wanting to get it done. Sorry I'm not much help on that, but best of luck!

GrahamEatt
Oct 02, 2018 4:45 am

The less stomach fat the better so the stoma is less likely to herniate.

Surgeons don't like moving a stoma, unless it's going from a colostomy on the left to an ileostomy on the right.

It's very important not to get constipation as outflow can get restricted and cause..... "all sorts of problems".

ShyIntrovert
Oct 02, 2018 7:51 am

I appreciate your input very much! Thank you for your reply!

Ursus
Oct 14, 2018 11:10 pm

Hi guys, maybe it's useful to compare notes! I had an ileostomy in January which went badly from the start. 9 weeks ago, I had the ileostomy converted to a colostomy and the hernia and prolapse that I had developed repaired. I had my rectum and anus removed and everything below the colostomy.

I have had no life since January with dreadful problems with an overactive ileostomy and huge rectal discharge issues. I am just beginning to feel a little more normal again but still exhausted and not able to do much without being sore.

The surgery was extremely difficult and painful, but I have spinal issues and much metal work in my lumbar spine as well as a reconstructed neck, so all my aches and pains got out of control when I had the surgery. This was not an easy process, and I'm not sure I could face any more surgery now.

The colostomy bag is, I think, less pleasant to deal with than the ileostomy and needs changing often as it tends to pancake and get very sticky. I miss not being able to empty it easily. The barbie butt has healed but is tight and uncomfortable in some places, and there are skin flaps hanging in others which get sore.

Overall, I guess I am improved as I could not have kept going with the rectum problems, and I had angry polyps of a malignant kind which needed removing, so I guess I had no other options. My colon hasn't worked properly for years since my spinal issues, so I have no idea now what normal is or should be. I'd just say go into the surgery with your eyes open and don't let the medical professional fob you off, ask lots of questions! The surgeon put my stoma exactly on my waistband, which is very uncomfortable and difficult to dress normally with.

Gemd
Oct 19, 2018 2:45 pm

So I had my entire colon and most of my rectum removed, but somewhere between 5-10cm of the very end is still in me. I get that removed in 3 months... I get a Barbie butt for Christmas. And then chemo, the heavy hard stuff. After the Barbie butt surgery, how will a 2-hour drive home feel on my rear end?

Ursus
Oct 20, 2018 2:26 am

I had a 1-hour 20-minute drive home from the hospital. A friend came for me who had a lovely old Volvo with leather seats that reclined right back, so we packed cushions and pillows, and I virtually laid down in the front seat. My friend, whose husband was driving, kept the chat going, and they distracted me and put up with my complaining hospital stories about the dramas of the previous two weeks, and that got me home. I was exhausted but so pleased to have escaped the hospital, I didn't care. The hospital would have kept me longer, but I just wanted to get out of there, and I'm very glad that I made that decision to get home. I am 10 weeks post-op now, and it has not been easy. I have only just now started to feel closer to me and without serious pain, although some lingering, and I'm still on a soup of medication. My Barbie butt healed reasonably well, although still some tight sore places and a couple of uncomfortable random skin tags. My stomach wound got infected, so I needed antibiotics and the district nurse for quite a few weeks. Now I'm just surprised how little stamina I have, and I just seem to be exhausted all the time, but I'm told that is normal. I had an ileostomy converted to a colostomy, and I must say I dislike the colostomy to manage and am struggling with sticky pancaking all the time and constant bag changing as a result, whereas with the ileostomy, I could just drain and empty it, so it never really got bulky. The colostomy is much more obvious in my mind, although friends assure me it is not a problem. I am very conscious of it, but it is right on my waistline, which is a nuisance as well. I don't think the journey will be too much for you so long as you can put the seat back and get in a position to keep your weight off your bum as little sideways! Hope this helps...good luck

drfields24
Nov 04, 2018 8:53 pm

Hi

I had Barbie butt done on June 28th. I was in the hospital for two weeks, and now I'm pretty much healed. I can't sit on a hard chair, but otherwise I'm good. I'm glad I had it done.