Can I opt for a removal of colon stump?

[DesertDeuces]

Now that I have a colostomy, I actually love it!

Two years ago, I had a rectal prolapse. Doctor removed about a foot of my colon and I was left incontinent. Then, it prolapsed again and was sent to another doctor who fixed the prolapse through laparoscopy. I was still incontinent. I actually had to eat foods that constipated me to even be able to make a doctor's appointment without fearing I'd have an unexpected mess.

So, the colostomy is a true blessing. Now I can go about town without worries.

My question is: Doctor said that in 6 to 8 months they want to reverse it. I don't want that!!! I'd rather have the ostomy. But, I hate that the stump leaks at times,. Does anyone have an idea of how I can ask the doctor to remove the stump rather than reattach it? I already spoke with the surgeon and he said it's too involved.

[kimmo]

Hi. I’ve read your post and can empathise as I woke 13 years ago in ICU with an ileostomy having lost my colon and large intestine. Like you I’ve learned to live with ‘Elvis’ and would not go back to how I lived before!

What confuses me is your reference to your ‘stump’. Are you referring to your actual stoma?

[DesertDeuces in reply to kimmo]

The stump is the remaining part of my colon that remains past the stoma. It occasionally leaks clear fluid through my rectum It's very annoying to me to have to wear depends after several years of needing them in case of accidents. I'd just prefer not to have my colon restored because I was totally incontinent, so why not just remove it.

[kimmo in reply to DesertDeuces]

Ah I understand now. My ileostomy is different as I have a mucous fistula on my abdomen, the opposite side to where my stomach is sited. I can still go to the loo but it’s highly unusual if I do and never experience leaks. I can totally understand you not wanting to have your colon restored and hope your surgeon agrees with you 🥰

[Howlinwolf999]

I was first diagnosed with Ulcerative Colitis here in the UK in 1976 aged 24 and I was horrified by the prospect of surgery but thankfully, with appropriate guidance from my doctors, I managed to avoid surgery until 2016. As a result of unwelcomed developments (significant risk of developing an aggressive cancer in the colon) in 2016 I had a panproctocolectomy with end ileostomy, this involved the complete removal of all of my colon, rectum and anus. The effect being that after removal of the anus everything was sealed up down under with my small intestine then coming though the wall of my belly. I believe the whole procedure took around 5½ hours so I guess it must have been a quite involved surgical procedure. If I am honest, before the surgery, I had not appreciated that they were going to remove everything. But they did and I have no leaks, no issues etc. (OK in early days I very occasionally I felt like I needed to go but it was down to a phantom poo feeling but I understand it is not that unusual.) I have read about people who had been left with a stump after an ileostomy and having leaks, occasional discomfort etc so I am so glad they removed everything as I get none of that. I can understand your surgeon suggesting the procedure is too involved as it not just removing your colon but includes your rectum and anus sewing it all up etc and it would involve a lot of work for him. BUT he doesn’t have to live with the leaks, incontinence etc so some extra work for him could give you a better outcome. Permanently living with the bag is not ideal but living with the incontinence and the inevitable restrictions on lifestyle is worse. Everyone’s case is different and what works for one person might not be appropriate for another. I would certainly want to talk again with the surgeon. There are times when you have to be a little assertive and push to achieve the best outcome for you.

Best of luck