Barbie Butt question?

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PaulSmarinecorps
Posts: 17
Joined: Wed Nov 06, 2019 8:51 pm
Facebook Username: Paul Smith

Barbie Butt question?

Postby PaulSmarinecorps » Mon Jan 20, 2020 8:54 am

Hi all, had LAR surgery in September of 19 which removed my sigmoid part of my rectum and colon, the pathology came back with positive margins going “south” not north so to say... the surgeon is recommending removal of everything going south hence the “Barbie butt”, and a permanent colostomy. My question is for healing after surgery. After my initial surgery healing sucked, felt as if there was a lead weight attached to my anus with a fish hook and every time I moved it pulled down and hurt like heck. And I had the constant urge to go initially which has subsided since. I have a temporary iliostomy now which will be nice to not have to empty as much and deal with the caustic output! So I am asking those who have had this surgery how was healing afterwards
37 yo male diagnosed 5-14-19
Adenacarcinoma
Stage 4 with liver met
6 rounds folfox
9-19 liver abl
9-19 lar surgery
10-19 positive margins
6 more rounds folfox

texazgal
Posts: 156
Joined: Fri Sep 28, 2007 4:40 pm
Location: central Texas

Re: Barbie Butt question?

Postby texazgal » Mon Jan 20, 2020 1:54 pm

I had this surgery in 2004, so it's been a while, but I remember most of the experience. I awoke with a permanent ostomy and barbie butt. There were 2 vac drains in in the butt cheeks which I had for about 4 days. They were low enough to not interfere with sitting. I won't lie, it was pretty painful for a long time. It was about 8 weeks to heal and about a year before I could sit comfortably. Don't use a donut pillow to sit. It puts a strain on the stitches and you do not want that. I used a regular bed foam pillow to sit and that made it easier. They let me take showers almost immediately after and I heard some take warm sitz baths to soak the area. I didn't do that. I've had no urges to "go" the old way and with it sewn up, there won't be any discharge from the anus which is a blessing.
The only other suggestion is for you to pose this question on the https://www.uoaa.org/forum/viewforum.ph ... 88f7656530 site, as not everyone on this site even has an ostomy and fewer still have had this procedure.
DX rectal cancer Aug 04
Surgery Sept 04, perm ostomy, "BarbieButt" Sept 23, 04.
Dad passed '93 CC
DD 42 yo/w/2 polyps removed
June 2019 stage 3 esophageal cancer
Aug. 2019 28 radiations, 5 chemo
Nov. PET shows original tumor and mets resolved, 2 new mets in liver and bone.
May 2020 port installed, started Folfox hope to do 12 rounds, cure not expected

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Barbie Butt question?

Postby Soccermom2boys » Mon Jan 20, 2020 7:44 pm

Hey Paul—

I am in the Barbie Butt club. LOL In general, your healing will be different because you are only a few months out from the initial surgery and I am guessing you have also had some chemo treatments as well, right? I had my permanent colostomy surgery about seven weeks after completing radiation, but before doing any of my chemo so keep that in mind when “comparing”. I had the surgery on a Thursday and was released the following Tuesday morning—not sure how long you would be in since you have already had previous surgery. I had two drains in my abdomen, one was removed before I left hospital, but the other remained for about two more weeks I believe. It was annoying dealing with it after coming home and having that hang off of you, but really it was an annoyance vs a physical pain. It was extremely excruciating “sitting” in car on the drive back home and for the subsequent follow up appointments with the surgeon the following few weeks. I was not able to drive for approximately six weeks after the surgery—per my doctor’s instructions as I had to be able to be comfortable enough sitting and focused on the road in the event I needed to make a sudden stop, etc., and any driving had to be within the 20 minutes of sitting time initially. I didn’t use any additional seating pad, I just “sat” more at an angle while on my couch—I guess more of a slump and on my side. They said I could only sit directly on my butt for small increments (10-20 minutes max) at a time for the first two months and so that is what I did. While it was uncomfortable at times, I honestly don’t recall it being anything other than what you would expect given the nature of the surgery. Not sure of your work status, but I would strongly recommend taking the full eight weeks (they generally say a 6-8 week recovery for this surgery) so that you give your body it’s best chance of recovering with less long-term issues by trying to do too much too early.
I am four years out and can’t say I have any issues from the surgery. It takes time to adjust to the permanent nature of it, but there are days where you so easily forget which is a nice feeling when it happens. :)
I hope this was helpful and good luck! And I agree with texazgal—the UOAA forum is a great resource as well for people with ostomies.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: Barbie Butt question?

Postby Lee » Tue Jan 21, 2020 4:07 pm

I too have a "Barbie butt", have for almost 16 years now. I went into surgery knowing the outcome. My choice, radiation destroyed 2/3 of my rectal muscles, thus I was tied to the toilet anytime I ate. That bag gave me my life back.

Again my surgery was many years ago, I was cut open.lapro was not an option. I had my surgery done by a board certified "colon rectal surgeon". I did not have any tube sticking out of me, butt I am assuming the others had lapro type of surgery. Again I did not.

For a few months following my surgery, I hurt back there like my tail bone was broken. It did get batter and after a few months, I could sit on the hardest seat with out issues.

One of the best advice I can give, walk, walk, walk!!! It really does help in the healing process.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!


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