Hi all!
The surgery (proctectomy/sphincter saved) went very well. I had an ileo in Dec 09.
I 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.
I have a pubic line small (horizontal) incision, a belly button incision, and a tiny incision for the drain. I 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. I don't have to sit on a special cushion. I could ride a bike today if I felt like it
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. 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-minute walk and then driving myself to the optometrist.
And many thanks for all the good wishes... they made me happy.
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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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Excellent news, it all went well, Beatrice!
What a relief to never have to wear a "surfboard" (Oz slang for pad) again, mate!
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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 - Regarding 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
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Awww, wonderful! Love that you're so happy. Cheers to you, darlzz xxxxxx Yay!
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This bit's for me, hahaha
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Way to go, matey xx
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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.
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? I have been a member of this club since August. Not a lot of fun, but getting by day to day. Thanks.
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I heard it here for the first time a while 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., the bum doesn't work -- just like Barbie's Butt. LOL
And so, of course, there are also Ken Butts too.
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Here's Barbie post-surgery, and doesn't she look well!
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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. 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, Washington D.C. Five and a half hours later, my ileostomy was secured!
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 was never even discussed with my procedure. I have no idea whether it's in or not and don't care.
Reddog - if you're doing fine with no butt issues ... that's all that matters
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. But I've heard from some people 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 doctors 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 as soon as possible.
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
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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'. The reason the 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!
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. 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
Hi Beatrice, just thought I'd better jump in here quickly as a lot of kudos are coming your 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 to be coming your 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
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Thanks, Michael, Ed, and all! It really does seem like the start of my post-ileo recovery now - never thought the little troublemaker could be such a troublemaker!
I 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
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... there are the odd twinges I can feel up my butt every now and then. But they are not painful, and there is 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
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!
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 the removal of the colon, rectum, and anal closure. The surgery was 6 hrs 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 yrs.) 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 mos. 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.