Successful Surgery and a Happy Barbie Butt!

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This topic discusses experiences and tips for a successful surgery and life after ostomy, focusing on maintaining a positive outlook and embracing the changes.
beatrice

Hi all!

The surgery (proctectomy/sphincter saved) went very well. Had ileo in Dec 09.

Had an awesome surgeon who did some magic - he's tops in BC - one of the 5 top rated in Canada. What did he actually do? Why do I not have a messy or hurting bum? Who knows ... these surgeon rock stars are not the best communicators. I have a follow-up appointment on Dec 19 and want to know exactly what was done. Apparently the majority (all?) was done laparoscopically.

Have a pubic line small (horizontal) incision. Belly button incision. Tiny incision for the drain. Had an epidural in addition to general anesthetic - I don't respond well (high tolerance) to pain blockers. What a difference it made! I woke up from the ileo moaning and in such pain. This time I woke up pain-free (they left the epidural stint in and administered pain meds via it).

So ... very little bum pain. Don't have to sit on a special cushion. I could ride a bike today if I felt like it. The pain I do have is coming deep from one side of the pubic incision. That is where I was 'stapled' inside. But it's a come and go pain, not bad at all ... definitely a healing type of pain.

Why did I wait almost 3 years to get this done! (Ileo in Dec 09). I had been wearing a pad (often with extra toilet paper wedged in my bum) for almost 4 years solid. I have not had a pad on since I woke up from surgery.

Best of all ... that troublesome rectum that decided to plague me with UC is gone! No chance of rectal cancer.

I'll describe in better detail what was actually done once I know. But let's just say this gal is a happy Barbie Butt camper. Today is 3 weeks post-op and I'm taking the dog for a 20 min walk and then driving myself to the optometrist.

And many thanks for all the good wishes ... they made me happy.

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Bill
Hello Beartrice,

Thank you so much for this update,

It is such a relief to hear that this operation has gone well for someone.   My surgeon was telling me that it was not an operation that could be done laparoscopically.  He also said that it was a major operation that did not have a high success rate so I declined that one.  However, it does look as though I will have to reconsider this at sometime in the future as things are not as they should be in that region. It made me laugh when you mentioned the extra toilet paper wedged up your bum - I know it only too well.

I look forward to the next installment when you find out exactly what he did and can I get my surgeon to talk to him? (Only joking - they sometimes get uppity about questioning their knowledge or competence)  

Best wishes  

Bill
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Past Member

Excellent news, it all went well Beatrice!

What a relief, never have to wear a "surfboard" (Oz slang for pad) again mate!

beatrice

Hey Jo - It's funny ... in the scheme of things ... wearing a pad doesn't seem like it would be a big deal. But it turned out to be the most depressing thing for me since my ileo. The discharge, blood, and continued UC pain did not allow me to get on with living with an ileo (as well as forget about living with an ileo - if you know what I mean.)

Bill - Re this operation not having a high success rate ... just make sure you are on the 'same page' as to what 'success' means to you and what it means to your surgeon. From all the research I did ... yes, it's a tricky complicated surgery -- but there are so many components to the operation. For me, success was still having my sphincter muscle (a very good idea for women especially) - and this was doable as there was no cancer. I wanted less pain. I didn't want to wear a pad. I didn't want the possibility of rectal cancer.

Sure - things could still go wrong later ... but right now it looks good.

Also, a colo-rectal specialist surgeon is who you should be doing this surgery. I'm thinking it wasn't a colo-rectal specialist who said that to Bill. The specialists are doing it night and day ... they know how to improvise once they get in there. From my research, there was no way even a great general surgeon was going to touch my butt.

If any of you have any questions, I'll try to answer them all. Don't mean to come across as an expert (far from it) ... but both the ileo and the proctectomy were a long time in coming and I feel like I've taken a Master Class

mooza

Awwww, wonderful love that you're so happy. Cheers to you, darlzz! xxxxxx YEY! This bit's for me hahahah. Way to go, matey! xx

 
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beyondpar

I'm so glad you finally had it done, and you are now on your way, Miss Barbie Butt. Getting the surgery really frees you up to move on. No more bottom issues to deal with. I have watched and read your posts over the last two years, and it's now done.
Now go on and enjoy your wonderful life. Love, Ken Butt. Michael. It truly is the greatest feeling never to worry about my butt again. I too am one happy Ken Butt person.

Pinky

Hi Bea - I'm so happy for you, that you are finally getting some relief. Believe me, I know the battle of the pads. Sometimes that part of it drives me crazy and the cost is unbelievable. I'm working with a new urologist now and I hope he can help me. Personally, I can live with the rectal discharge but the other (urinary) has become just too much! Way to go, lady!

grandy

I am sure you will think I am out to lunch but I don't know what a Barbie Butt refers to. Can you explain it to a dummy? Have been a member of this club since August. Not a lot of fun but getting by day to day. Tks.

beatrice

I heard it here for the first time awhile back and it just describes what happens so well.

The operations/etc are done to the 'bum' but the bum still looks 'normal' ... but it isn't anatomically correct ... i.e. bum doesn't work --Just like Barbie's butt. LOL

And so, of course there are also Ken butts too.

Past Member

Here's Barbie post surgery and doesn't she look well!

beatrice

Love it! She's rocking that fashionable bag big time! LOL

santabelle

Well Barbie butt, I'm glad to hear you are doing well! When you have an ileostomy, the colorectal surgeon will automatically remove your sphincter muscle and then they will sew up the wound. Unfortunately, I have never healed from that procedure in the last three years. I've had two perineal debridements since, but I still have a gaping wound that is constantly draining. However, I have Crohn's disease which is much harsher than colitis, and as a result, my disease keeps attacking my perineal wound and it constantly drains!
I also had a great surgeon, the head of Georgetown University Hospital in Washington, D.C. Five and a half hours later, my ileostomy was secured!

beatrice

FYI - Removal of the sphincter muscle is definitely not automatic with an ileostomy - nor with a protectomy. Many factors come into play as to whether or not the sphincter muscle is left in place.

macsac1

I guess I have a Ken butt then. Mine still hurts!

reddog

I can't believe how many issues you all seem to have with butt problems after an ileo. I can't figure out why everyone just doesn't have their rectum removed with a permanent anal closure. I had that on 1/10/11 and have had absolutely no issues whatsoever. Anyone contemplating an ileo, I would strongly recommend you get this. Why deal with all the other hassles?



The sphincter muscle never even was discussed with my procedure. I have no idea whether it's in or not and don't care.

beatrice

Reddog - if you're doing fine with no butt issues ... that's all that matters. But I've heard from some peeps who have had the rectum removed at the same time as the colon (like you) who still experience some bum problems ... we're all different.

Here's what I know: The rectum is sometimes left (with an ileo op - especially for non-cancer diseases) for various reasons. The potential for a J-pouch is one ... you need the rectum if you are contemplating that. Even patients that say to their docs that they are not thinking of going J ... especially if they are young, once the surgeon gets in there and sees the rectum looks healthy - the rectum is often left. Leaving that option open for a J pouch.

Taking the rectum out in the same operation ... adds hours to an already lengthy op. In my case this was the main reason the rectum was left when I had my ileo ... I was not doing well during surgery and they wanted to close me up and get me off the table asap.

I'm sure there are other reasons too -- there are quite a few of us that woke up with our rectums inactive but still there

Found out yesterday ... to remove my rectum I had a Single Incision Laparoscopic Proctectomy - Sphincter Sparing. It's a finicky op ... not all surgeons feel comfortable doing it - rectum removal is most often done 'non-laparoscopically'. Reason sphincter was left ... it is a helpful muscle to stabilize the pelvic floor.

Today I'm going to start decorating outside (we're Griswold wannabes) ... feeling so good!

Have a wonderful day, all!

beyondpar

Beatrice,

You are a seasoned veteran, and your explanation is right on...everything, but something that's never talked about enough is the pelvic floor issues, as you mentioned...for women, I believe it's very important to keep a good pelvic floor, and that too is a major reason to keep that rectum area intact for women, as a weak or damaged pelvic floor can alter the vagina area in ways that aren't pleasant for the woman...and therefore it's imperative to find a good surgeon who has done many rectum removals and is very comfortable with the surgery........Your other point and probably the biggest point is the difficulty and length of the surgery time that's involved for a surgeon to do an effective rectum removal...

So thank you for a great post.......and welcome to Barbie Butt........Michael

gutenberg
Hi Beatrice, just thought I'd better jump in here quick as a lot of kudos are coming you're way and I wanted to say congratulations while I still can, From now on you'll be the person to go to from the female side, I bet there are a lot of questions about due to be coming you're way. so let me say, we're so happy everything went so well for you and that continued success is all you know, take care Beatrice, keep smiling, Ed
beatrice

Thanks Michael, Ed and all! It really does seem like the start of my post ileo recovery now - never thought the little a-hole could be such a troublemaker!

Am pleased to share what I've learned or experienced with anyone. Just ask.

P.S. Just for clarification ... I'm not totally on a magic wand ride here ... there are the odd twinges I can feel up my butt every now and then. But not painful and no discharge/blood and no full pressure feeling. The twinge sensation is often experienced (others have mentioned it here). It's almost a phantom 'pain' sensation. But I can finally say I am pain-free in my abdominal/bowel and rectal area ... I have not been able to say this for over 40 years. So maybe life does begin at 56!

reddog

Beatrice - Thanks for your input. I found it informative. Brief history. Had UC with pre-cancer cell changes. In this case, the standard procedure is removal of colon, rectum, and anal closure. Surgery was 6 hours with complications, including excessive bleeding, but I got through it.

Doing fine now. Never even considered a J-Pouch because I'm an old dog (66 years) and didn't want to risk future complications plus two surgeries. These surgeries are all very complex, and as you said, we are all different with different situations.

I'm just grateful that 10 months post-op I'm doing okay and working out in the gym 5 days a week. I wish you the very best and a speedy recovery.

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