Pros and Cons of Rectal Stump Removal

I have been diagnosed with UC since I was 21 years old. (39 now) It started as an occasional flare up and ended up with a full colectomy in 2010. After going septic 5 days later, 6 days in a coma, 3 months in the hospital, and a completely different lifestyle, I am still experiencing complications with fistulas. I have had fistulas cut out 4 times over the last 3 years, but they just keep coming back. I am told because my rectal stump still has UC. I now have 2 active fistulas; 1 at the top of my butt cheeks (for lack of better terminology) and 1 at the lower end of my butt cheeks which is new, very painful and about the size of a nickel.

So I basically have 2 options: Hope that sometime soon my rectal stump is healed and I can have reattachment surgery (Which if anyone is aware of anything that will help with healing I'm all ears) or have my rectal stump removed. Which means I'm a bagger for life. Which I've learned isn't the end of the world, but obviously not ideal.

I would like to hear from those that have had their rectum removed, both pros and cons, to help in my decision.
Thank you

I too, was diagnosed with Crohn's since I was 18, and now have had my ileostomy for 20 years. As well, I suffered with a recurring fistula in my rectum for 6 years, and also had 6 surgeries. This past January, I had my rectal stump removed as I was having major pressure in the rectum. After that surgery, I got a staph infection in the hospital, which set me back for a while. I was told by a doctor that the pathology report came back with a low-grade cancer in the rectal area, and would need radiation and chemo. I refused both and have changed to a more holistic diet, which I'm sure has healed me. In my opinion, it might be better to have the rectal stump removed to avoid cancer. Living with an ileostomy is just a way of life, and sure beats the alternative. You will not have to worry about fistulas once the rectal stump is removed. Good luck with your decision.

Its taken me a long time to gather the nerve to post this question, so bear with me please. In 2003 I had to have surgery because my colon was dead from a previous surgery that went awry, and I'm being charitable here. My question is: ever since I've had these three operations I have this strongest feeling I need to have a bowel movement and during those times I cannot urinate until this feeling passes. When I'm sitting on the throne and my spinchter is working to let me know I'm having a bowel movement, without of course no discharge, but I still have to wait until this so real phantom aggravation passes, and when I does I waste no time emptying my bladder as I never know when this will start up again. It really bugs the hell out of me when my bowel spinchter has the control and I keep running to the bathroom and having a bowel movement that never happens, and a bladder that just has to wait its turn. Has anybody else had this problem, if so I would dearly love to hear from you, take care all and have a good day, Ed

Gutenberg,
I'm trying to figure out if we are experiencing the same thing. When I have to relieve my bladder, I feel like I have to have a bowel movement as well. My rectal stump is sick with UC, and I have to relieve discharge from it. If I don't sit down, then I will discharge in my pants. Is that kinda what you are experiencing?
Sean

Hi Sean, In my case my whole colon was removed, but when I'm sitting on the throne I can actually feel a bowel movement without the output, of course but try telling that to my rectal spinchter, Ed

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I also had a full colectomy in 2010. But I feel like I have to go. I have just grown accustomed to sitting down whenever I have to empty my bladder. I hope it gets better for you. I'm new here too, and it's taken me 3 years to actually talk about it with other people. Glad you are able to talk about it.

Thank you for your reply, aapplet. Thus far, I have been cancer-free. It is a very hard decision to make. I was very active before all of this happened. Now, the bag causes frustrations when I try to do things. But, the fistulas are painful and put me out of work from time to time (as is my current situation). I just know that once it is done, there is no turning back.

Thanks again,
Sean

Well Sean its taken me ten years to finally get up the nerve to pose that question, I had mentioned it to my doctor once and he reminded me of one of my brothers who, when asked a question he didn't want to answer, I could almost piss myself at the stuff he would come up with and in the end I know I had forgot the question and I'm sure the one who asked it felt the same way. But this forum of ours has some mighty fine people and I can't remember when I have ever asked a question that someone wouldn't try to help, take care, Ed ;

I've had my ileostomy now for 18 years, but didn't finally get my rectal stump removed until 8 years ago. And still to this day, once in a blue moon, I'll get those phantom pains of a bowel movement.

Juust_Jim many thanks Jim for your reply, but just one question, when you are having those phantom pains do you find it possible to empty your bladder during those times? ED

No, not at all Ed - that really puzzled me when I read that in your reply because I'm in the early stages of kidney disease.

Juuust_Jim, speaking of Kidney Disease, I once blacked out at home and woke up in the hospital and I think they flushed me out and after that things seemed to be normal, but I'm always being checked for any kidney infection and had to see a specialist who told me I came close to having a transplant but we came back pretty strong and I don't even hear from them anymore.

But I still have a hard time when My Colon spinchter goes into action, like I say, I feel I am passing something, but nada, considering I have no colon and I have to wait for this to pass before I can empty my bladder and sometimes that can take quite a while, Ed

SeanMc: Pardone my ignorance on this subject, but when I had a colectomy and talked to my surgeon and asked if I could be reversed and he said yes, and then I asked him would my discharge be the same as I was having from my ileostomy and he also answered yes and that was enough for me and passed on the whole idea, I hope you have asked that question as I can imagine what a burning rectom that would entail, Ed

I wholeheartedly agree with you, Ed. I was supposed to be reconnected via an internal J-Pouch, but I ended up not being able to go through with it due to complications in the healing process. Years later, when the internet became the ever-growing wealth of information that it is today, I joined several online support sites. From talking to others who had gone through with the procedure, I learned about how they still had to always know where the nearest restroom is and the awful "butt burn." I'm really glad I wasn't able to be reconnected. Sure, looking normal again and not having to "hide" the bag with my hiked-up waistline would have been nice, but to again have to suffer all the same bathroom problems I had before my colectomy for the rest of my life just to appear normal didn't sound worth it to me.

Juust-Jim, glad you made that decision, I have read too, too many stories of people who took the other route and landed back with the ileostomy, sure it would be nice to be rid of the bag,but not at any cost, especially a burnt out butt, take care friend, Ed

What do you guys mean by butt burn?

If you have a severe case of IBD or have been reconnected but now have a "short-bowel", your output is very loose and acidic because of the absorption loss. So, when you're going to the bathroom countless times a day, your sphincter can and will get very sore from the acidic output and frequent bathroom trips.

First time I've heard of that. Thanks for the info.

I've had a complete done. Colon, anus, rectum- removed. I still get "phantom" BM's where I'll have the feeling like I desperately have to go. My doc told me that it's just phantom like when someone who's had an arm removed will swear that their wrist itches.

Recommendation was to sit on the toilet and push. I thought it was silly but I started doing just that when I felt the urge and it passes quickly. If I ignore it, I'll have the urge for hours, which will drive a person nuts after awhile (laughs)

Sit and grunt, you'll feel better....

Yes, I also had this done due to Crohn's. My so-called butt closed and leaked water for 6-7 months. I wish I never had it done or I had it done 5 operations ago. :(

Wow, I haven't been on here for awhile. Good luck everyone.

I do hope you all get the help you need.

It's a shame hospitals don't give stoma patients a contact number for questions they need to ask.

Whoever set this forum up, a huge thank you. It's so valuable to have someone/somewhere to turn to! 👏