Ileostomy - total proctocolectomy

I have a series of rectal conditions that impair my ability to evacuate stool, leading to severe constipation and obstruction. It was deemed by doctors that all conventional treatment and biofeedback had failed, recommending surgery. Last December, I was given a right-side loop ileostomy as the least invasive option to see if diverting my waste into a bag on my abdomen (instead of through my large colon and rectum) would allow the rectum to work better.

It was going well for around a week or so after surgery, but then my symptoms returned, and I began struggling to void rectal mucus and gas that is produced in the lining. I was instructed by the surgeon to give it at least 6 months and prescribed suppositories, but they only made things worse. 

It's been over 8 months now, and I'm back to having evacuation problems, so I'm going to request further surgery. A total proctocolectomy is the only surgery I'm aware of to remove the colon and rectum. 

 

 

 

 

 

Hey there,

Have they done testing to try and figure out why you can't evaluate anything? Such as an anal manometry? The defecating test? And the balloon expulsion test? If you haven't had the tests done, I would recommend having them done and finding out what the results are. If you have pelvic floor dysfunction, you don't want to take your the anus.

Hi, I started out with a loop ileostomy in 2017 and had the same issue with mucus. The mucus was hard to pass, etc.

I went for the end ileostomy with removal of the colon and rectum, total proctocolectomy.

The decision is yours. I'm fine with it, but remember there is no turning back. Never a chance for reversal. My colon was so damaged, and my rectum would spasm, so in my case, I'm very happy with my choice.

G-Day Milhouse, If the ileostomy is to be permanent, then get your rectum and anus removed. If it is permanent, you don't need your butt, so get it stitched up, and no more mucus, and life will be good. I have a Ken butt, best thing I ever did. Regards, IGGIE

I went through these tests about ten years ago, at the time recommending biofeedback therapy. I received biofeedback for 6 months, but my rectum didn't respond to anything. Surgery is my only option.

Words of Encouragement from Ostomy Advocates I Hollister

Thank you 

Yes, exactly, thanks.

I understand completely. Biofeedback did nothing for me, but that's not why I was asking or saying it. I asked to see if they found out what the problem was, which is a big key to making the decision to have your rectum and anus removed. If it is pelvic floor dysfunction, you don't want to take the anus. I say this from living with pelvic floor dysfunction, and my pelvic floor dysfunction is so bad that I couldn't even do an enema—the liquid stayed in and never came out. That's the reason why I have my ileo. They ended up taking my rectum, and I chose to leave the anus because once that is closed off, there will be ten times the pain and pressure. So that's why I was asking to see what your diagnosis is.

I'm the same; I can't do enemas either. The fluid just stays in.

That's good to know about not taking the anus if you have Pelvic Floor Dysfunction.

In 2016, I underwent all the testing you listed, including anal manometry. The results mentioned dyssynergia and little change in the "anorectal angle" during defecation. I couldn't push all the paste out.

Physiotherapist findings from 2016-2024 include:

Dyssynergia, paradoxical contraction of the external anal
sphincter, decrease in anorectal angle during
reps of contraction with increased tone, hypertonicity and dyssynergia of the levator ani
and pelvic muscles during straining for a BM, hypertonicity in the
superficial pelvic floor muscles with concurrent
reduced function in the deep muscles.

 

 

Mine said the same, it is being called Pelvic Dyssynergia. The doc said it was another term for pelvic floor dysfunction. Lol, I said, "Why don't you just say it's broken instead?" My results stated I had ZERO movement of the pelvic floor, and there was NO widening at all of the anorectal. Yeah, so when I first got my ileo, they did a loop because of the mucus so it wouldn't get packed in my rectum. That didn't end up working; I still got jam-packed, and when I went and had to have my ileo moved to a different spot because I retracted so badly, the doc did an end and took my rectum, but I made sure he left my anus. The pressure and pain already felt with this condition hurts like a son of a... Now if that's closed all the way up, that's even more built-up pressure. When I read your post, I had a feeling just by what you said was happening, that's why I wanted to make sure you had the tests, and I wrote you to give you a heads up. The docs won't be thinking about it or factoring it in. They don't know too much about it, and unfortunately, there isn't much they can do besides the biofeedback, physical therapy, and Botox injections.

Can I ask how you know this? If you have pelvic floor problems, you shouldn't remove the anus? Where did you find this information? Thanks.