Rectal Stump Removal Advice Needed

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974
squirrels in the attic
Oct 10, 2023 12:04 am

Hi. New here. Should have joined earlier in life. Have had my ileostomy for 40 years. Now Dr is suggesting I have my rectal stump removed. I'm experiencing what others have called phantom BMs. That surgery sounds extremely difficult to heal from. Any wise words?

Beachboy
Oct 10, 2023 12:28 am

Search around this website's topics. Many here have dealt with rectal stumps, Ken and Barbie butt surgery, and recuperation tips after that surgery.

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rlevineia
Oct 10, 2023 1:43 am

Mayo wanted me to keep my diseased anus/rectum, after my ileostomy. Possible hookup & dilatation of the terminal ileum. After 15 months, no healing, but daily enemas with Dakin's (bleach). Yuck. I had them remove my anus & rectum. Went home in 3 days, no problem.

CrappyColon
Oct 10, 2023 1:54 am

From what I've read from people in this group and then also a friend of mine, it seems like the people that have the hardest time with this surgery and the healing process are the ones who have undergone radiation treatments (with or without chemo) for colon cancer too.

IGGIE
Oct 10, 2023 1:43 pm

I got rid of a J-Pouch after 18 years and went for a full-on K-pouch, and I don't know if I was lucky or not, but I had no problem with pain down there. After 18 years of a J-Pouch, I am now loving my stoma. Life is 100% better. The main problem of leaving the rectum intact is, as you said, the Phantom Bum and also the mucus that needs to be excreted. Regards, IGGIE

 
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squirrels in the attic
Oct 10, 2023 2:57 pm
Reply to Beachboy

Ha. Never heard of Barbie Butt but makes perfect sense. Someone with bowel humor thought that one up!

eefyjig
Oct 10, 2023 3:49 pm

Hi Sdclark. I, like Iggie, had my five-year-old J-pouch removed and rectum removed. Very sore for a month or so, had an early abscess that healed, then no problems since. Good luck!

Justbreathe
Oct 10, 2023 4:09 pm

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Great idea for a Halloween costume - Phantom bm

On the serious side, my answer to this question is - I guess it would depend on how bad it is - painful? Irritated all the time? Uncomfortable? Constant leakage?

For me, surgery would always be my last resort but then I am a self-proclaimed wimp and because of my age, I am unwilling to chance anything (other than the lottery) any more. You have come to the right place though - the warriors on this site are without a doubt the bravest of brave and most helpful and knowledgeable. They have helped me through some of my darkest hours! jb

squirrels in the attic
Oct 10, 2023 5:40 pm

Love the costume idea! Thing is, all I have is pressure similar to when I first had the ileostomy surgery. No leakage. But I do have horrible skin irritation up my (not Barbie) butt and in the groin area. The dermatologist was concerned that the stump may be contributing to this.

Beachboy
Oct 11, 2023 12:56 am

I would give a better answer... But I'm stumped.

NAMEINLIGHTS
Oct 11, 2023 8:36 am
Reply to Beachboy

I have never heard of this. Can you explain to me what it is, please?

squirrels in the attic
Oct 11, 2023 3:05 pm

Do you mean the Barbie Butt? It was new to me too, but I've realized that it's the butt that doesn't function, like a Barbie doll. No hole!

Hope this is what you were asking about.

Beachboy
Oct 11, 2023 3:28 pm

It's a butt-a-dectomy (ok.. a little humor). Surgical removal of anus and rectum due to disease or physical trouble.

warrior
Oct 20, 2023 3:01 pm

Well put, Beach Boy!

You nailed it. Someone explained it as looking at a toy doll's rear end.

But I think she was talking in "layman's terms." What is it? Why the term?

G.I. Joe, Ken, and Barbie. Quite funny in hindsight - pun intended.

I would like to address the question of stump removal as Squirrels in the Attic asked a couple of specific questions, so this goes to Squirrels.

I read your profile.

Having Henry for 40 years is quite an achievement! I'm very much surprised by all the people on this forum with issues with inflammatory bowel disease, Crohn's, colitis, cancer, and how much we differ in our experience with the butt that doesn't work or more specifically a rectum detached and whether or not it's worth keeping or getting it working again.

You mentioned the dermatologist is concerned because of the irritation in the front area of your body, thinking that the stump is causing this? He needs some proof - evidence to back that up! Not just the idea to remove the butt and see what happens! Your best approach is seeing an ostomy nurse who has more experience than your dermatologist or gynecologist.

I have a dermatologist that helped, so keep him, but experience is needed here, especially if you choose a surgeon. Research a good one.

How often do you think the dermatologist sees patients like you as compared to an ostomy nurse? Ask your G.I. about finding one.

You are very lucky to just have these phantom bowel movements without discharge, I assume? A lot of us have leakage - a mucus or bloody discharge, and I can speak firsthand from my own experience that only after 6 years of having an ileostomy, the discharge could not be controlled with meds.

Then you question those meds long term - side effects.

On October 9, 2023, I had the Ken butt done. I asked people here months ago the same question about stump removal and recovery. The same people replying to you also replied to me back then. I was and am grateful to them. Thanks, folks.

I am 2 weeks post-op.

Firsthand experience is discomfort. Surprisingly, not much pain. Your cheeks are completely swollen to a point where it feels you have three. Ice cold packs helped a lot.

It does help to "sit on it."

There are restrictions too, which seem common sense, and you gotta walk.

Hospital stay: 3-5 days. I was there 7.

And the type of surgery? Laparoscopic robotic or traditional.

We went in thinking robotic, but unfortunately, he tried and failed. Ended up cutting into the belly area, traditional. Now this too is just uncomfortable 2 weeks out.

But they give you a nerve blocker while under anesthesia. When that wears off, grab the oxycodone! Holy hell!

The question you need to answer is this frontal irritation? After 40 years of Henry, and a non-functioning rectum, what's the source of it?

My reason for having the Ken butt surgery was to stop the embarrassing leakage and reduce the prospect of cancer there, and sincerely we are hoping the rectum was the source of inflammation proven by sigmoidoscopies, causing painful arthritis.

Also, as we found out within six years of an idling stump, Crohn's developed.

Post-op note for the Ken butt guys:

Any of you have trouble peeing after that garden hose-sized catheter got removed?

A Recovering Warrior Indeed.

squirrels in the attic
Oct 29, 2023 7:22 pm

Hey Warrior. Very helpful. My surgeon will claim that the risk of cancer is greater the longer we leave it. Can't even get a pediatric scope in there. But the scan shows a much longer stump, so perhaps it's septated. That kind of scares me. The dermatologist claims I have psoriasis, which is also autoimmune like Crohn's. But I did have rectal strep, which apparently is odd. Really though, I'm happy to just carry on the way I am. I'm active, reasonably happy, and have no stoma issues. Dunno! I'm also getting Remicade every six weeks. Wonder if that is necessary? Ah, so many questions. Sandra

Beachboy
Oct 29, 2023 10:28 pm

As the old Bard would exclaim:

To butt, or not to butt... That is the question.

A butt, by any other name, would be just as sweet. (Okay... maybe not).

A butt is nothing either good or bad, but thinking makes it so.

I do love butts in the world as well as you: is not that strange?

Much Ado About Butts

The course of true butt never did run smooth.

 

squirrels in the attic
Oct 31, 2023 4:03 am
Reply to warrior

Hey Warrior. Well, guess I'm going to have it done. I'm sure, like you, the robotic won't "cut it" and I'll end up with yet another slice down the tummy. I also saw my gastro and we decided it's time to come off the Remicade. She said that Remicade has been known to cause psoriasis! Imagine my shock when I heard that. But before surgery, I'm planning a trip to Ireland and Scotland, so Barbie butt can wait till next fall! Hope you are healing up and enjoying some comfort food. Felt like winter today here near the St. Lawrence. Where are you located? Sandra