Terrified of Upcoming Barbie Bum Surgery - Seeking Advice and Support

Replies
13
Views
219
StitchTheStoma
Apr 30, 2024 12:08 am

I have had a stoma since 2020. Best decision I ever made. Originally had a loop but had the end ileostomy done in 2022. I left my rectum with the hopes I get out, meet someone, and have kids. All I've had is proctitis and been stuck in the house. 

I now need the Barbie bum surgery, but I'm terrified. I don't want to go through surgery again. My last one, I had to be taken in a second time because they thought I had internal bleeding. I also know this recovery is a lot tougher, and I don't think I have the mental or physical strength to deal with any complications. Sepsis, wound packing, abscesses, leaks… I just feel very exhausted, so hoping to get more information here and hopefully feel brave. 

AlexT
Apr 30, 2024 3:34 am

Change your thought process to positive... After I get this fixed and I recover, the world is mine for the taking.

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StitchTheStoma
Apr 30, 2024 9:40 am
Reply to AlexT

I did this the last two times. I just can't seem to do it again. I think I feel let down because all through my treatments from diagnosis of UC to now, I've been told, this will change your life.

Here I am, still bleeding out the back, still tired and in pain. It's difficult to trust.

I usually make lists of things to do. But I can't even seem to do that 😔

bowsprit
Apr 30, 2024 9:51 am

Hearty welcome. All the foreboding turns out to be zilch eventually. The pain and anxiety are followed by the good days. All the best wishes.

eefyjig
Apr 30, 2024 12:03 pm

Hi, Stitchthestoma, I get that you're scared because of your prior experiences. They really do shape how we feel and react, and I sure have gone through the fear and anxiety. However, it doesn't mean you will have complications this time. It also sounds like this one is different as it will remove the source of your symptoms. I had a permanent ostomy (third stoma, other side of my abdomen this time) and my rectum removed all in the same surgery. I actually elected to have this surgery because I was so symptomatic with my j-pouch, and I was so relieved that I'd feel better that it actually turned out to be my easiest surgery. Alex is right, try to keep in mind what this is going to lead to. Sure, your butt will be sore for a month or two, but your future should be brighter. Try to keep your eye on the final result.

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
aTraveler
Apr 30, 2024 12:37 pm

There are no certainties in this arena; the best we can hope for is good surgeons and wound care nurses we trust. We have to make decisions based on the information they give us. The reason they are so important is they have our charts — each individual and circumstances are different. The decision to have a stoma, you said, was the best decision you ever made. Another decision you made was going from a loop to an end ileostomy. At the same time, you made the decision to keep your rectum "in the hope..." you stated. This appeared to be more of a gamble than your previous two decisions, and it didn't pan out. The thing about gambling is sometimes you win and sometimes you lose, but most of the time you lose — Vegas was built on that principle. It seems when you make decisions for health reasons, things work out for you. The decision to have your rectum removed is a decision you must make based on health. You gambled with this decision before and experienced all sorts of complications. For your health, the answer seems very clear. You seem to make very good decisions when addressing your health; therefore, you should stop looking back. In your description, you never mentioned, in your complications, the dreaded f-word (fistula). Make the decision you know to be correct. Talk to your doctor about anti-anxiety meds if you must because you are dealing with a lot. I am praying along with you to defeat the fear/dread/anxiety you are experiencing.

ron in mich
Apr 30, 2024 12:56 pm

Hi Stitch, welcome to the site. It's logical to dread more surgery as nobody enjoys more pain and not being able to get up and do things, but when you stop and think about the outcome of no more meds or doctor visits due to current problems and being able to resume a regular lifestyle, the choice to have it done becomes easier. Good luck.

IGGIE
Apr 30, 2024 1:45 pm
Reply to StitchTheStoma

G-Day Stitch, a few years ago I had my J-Pouch removed and got my butt stitched up. If you're as lucky as myself, I got no pain down below. Even if it is a little painful, it doesn't last forever, but the final Barbie Butt will be forever. Do it, you won't regret it. Regards, IGGIE

Morning glory
Apr 30, 2024 2:54 pm

Welcome to the site. You have solid remarks from everyone. I am glad you found this site.

ratmother
Apr 30, 2024 4:12 pm

I just wanted to say that I'm sorry for your experiences thus far. I'm not totally in the mind-over-matter camp, because it can be hard to overcome anxiety when past experience has not been positive. With that said, I have an energy healer friend who sent me links to binaural beats for healing when I was experiencing negative side effects and no relief from UC symptoms while on yet another medication that was to get me into remission. Being an anxious person in general, I've really enjoyed listening to them when I'm feeling overwhelmed. It's nice to have a calming option that isn't meds (or weed!) and isn't asking anything of you. My friend sent YouTube links (try “SACRAL CHAKRA CLEANSING SOUNDBATH 》Let Go of Draining Negative Emotions 》Chakra Healing Music” and/or “Solar Plexus Chakra - 364 Hz - Chakra Healing / Balancing - Binaural Beats - Meditation Music”). I found some binaural playlists on Spotify too.
I hope you get relief soon - you can do it!

AlexT
Apr 30, 2024 5:46 pm
Reply to StitchTheStoma

As long as you're still breathing and wanting better for yourself, you get your mind right and eventually your body will follow. The negativity does nothing to better you and can actually drag you down. So, cheer up, smile, go get your butt sewn up, heal, and get on with enjoying life. The sun shines every day, you just gotta get past the clouds sometimes. ☀️ BTW, just so you know, I was curled up in a ball, not wanting to deal with things, running to the bathroom 20-30 times a day, got the cancer dug out of me, got my butt sewn up, had complications from radiation, etc. for about 18 months so I get your mindset. I got nothing but positive now and it's always sunny no matter what. You got one life, you choose what to do with it. Have a good one.

Hisbiscus
Apr 30, 2024 10:39 pm

If you have the end ileostomy, definitely go for the Barbie bum. You will be in a little pain for a while, but it is well worth it. I had it with my end ileostomy. No more butt pain or spasms.

StitchTheStoma
May 01, 2024 8:17 am

Thank you, everyone ❤️

I think, because I was unwell but I made the choice for the bag, it was easier. I knew I'd eventually need the Barbie bum, but hoped I'd have had kids and a bit more of a life. I hate that it's making all the decisions and I don't feel ready for the recovery. 

I have an appointment today to try and get more info, so 🤞🏻

Spdjnky
May 09, 2024 1:13 am

Had my butt done last September when I had my ileostomy, had it all done at the same time. Three months of aftercare by visiting nurses to heal the wound and my butt. Unfortunately, according to my urologist, the problem I am having is not a large prostate. It's that my nerves were somehow damaged in that surgery, and now I have to put up with symptoms of an enlarged prostate. No fun. But considering the problem and the pain I had with my butt and anal fissures, I am much better now. Just wish I didn't have the prostate problem.