Ostomy reversal recovery: Trouble completing a bowel movement, tips?

Hi @asolidrock. There is not a specific group for ostomy reversal. I know you have posted before about an ostomy reversal and not gotten a lot of answers.

@colleenyoung do you have suggestions as to where this could be crossposted to get more responses? The previous thread was also in the ostomy group.
https://connect.mayoclinic.org/discussion/oscomy-reversal-recovery/

Thank you for your response. I saw the Dr that did my surgery; she was kinda nonchalant about a hernia; she is gonna have a cat scan done. This surgeon saved my life in the Emergency Room and i trust her totally. She has also given my wife and sister advice who to see about some issues they have. God put her at the right place at the right time.

Thanks in advance

@asolidrock I'm not sure where the hernia comes in, do you have one, or are you worried about one? Is it related to the ostomy reversal and your issues with the ostomy reversal?

Have you tried talking with a WOCN about your post reversal issues? They may have more experience with your problem.

@asolidrock, you're in the right group (Ostomy & J-Pouch) to ask questions about ostomy reversal

Use the group search to find discussions specifically about reversal https://connect.mayoclinic.org/group/ostomy/

I see you got many responses to the question you posted in the group here:
- Ostomy reversal recovery: Trouble completing a bowel movement, tips?https://connect.mayoclinic.org/discussion/oscomy-reversal-recovery/

Also see this helpful discussion:
- Colostomy reversal: What can I expect? Recovery time?https://connect.mayoclinic.org/discussion/colostomy-reversal/

@asolidrock, how is your recovery going? What questions do you have?

Thank you Ms Young I'll try my best.

I had an oscomy reversal in May; after a couple months I was doing fairly well, but in the last month seems like I've having some of the post surgery symptoms again which is very discouraging. Just wandering if anyone else has had those issues. I know this may be the wrong group but I tried the other support group for post op but couldn't ever figure it out.

Thanks in advance

Hello. I’m sorry to hear you’re dealing with that. When you say that you’re experiencing post-op symptoms, can you explain more?

I had jpouch surgery 2.5 months ago, so that’s when they did the takedown of my ileostomy and opened up my jpouch for business, so to speak. To my discouragement, I spend a ton of time now in the bathroom having to go #2 throughout the day and night. I am going to the bathroom approximately 12-15x a day. It’s really frustrating to me - all these past surgeries just to feel like I’m back in a UC flare.

I’ve had to relearn how to go to the bathroom out of my bottom after having an ileostomy for almost 2 years. My perianal skin is so irritated by all the bowel movements, regardless of all the different creams and ointments I’ve tried. I wish I could report to you a better experience, especially since it sounds like you too are having issues. I follow-up with my GI doc in two weeks so I plan to address my ongoing symptoms with her. I wish you the best of luck!

Oh man im sorry to hear that. The problem is have is not completing a bowel movement and itching sonetines; I have be careful because if I strain in any way I have to go to br. I do pray yours gets better because it was similar to yours right after surgery

@kaseyelizabeth sorry to hear your ileostomy takedown hasn't been smooth sailing.

It's possible you have pouchitis, which your GI doctor can address.

Did your medical team advise you to do kegel exercises to strengthen your anal muscles prior to your takedown? This can really help with continence, particularly since the J-pouch contents are going to be the same as your ileostomy contents were. A referral to a pelvic floor therapist might be in order.

Since you had an ileostomy for 2 years, you have a pretty good idea of what your output consistency is. Do you have foods that make your output thicker? I found when I had a J-pouch that taking metamucil helped with creating a thicker consistency and made it easier to manage the j-pouch.

Can you share why you had the temporary ileostomy for 2 years?

Thanks for the input. I definitely worry that I have pouchitis or stricturing or both. As a UC patient for over 20 years now, I was successfully on biologics since around 2021, until they failed. I was hospitalized for a terrible flare in 2024 where I underwent heavy IV steroids and other biologics to no avail. I ultimately underwent a full colectomy of the large intestine, which resulted in me having to adjust to an end ileostomy.

The plan was to get healthy enough to undergo jpouch surgery and ileostomy reversal in relatively short order. But months of abdominal abscesses and other numerous complications slowed that healing process down. Finally at the end of June this year, I was healthy enough to undergo take-down surgery of the then loop ileostomy and start to utilize my new IPAA jpouch full time.

As I’ve mentioned, it’s not been a smooth process since that (hopefully) final surgery. I have terrible urgency to make it to the restroom in time, with occasional accidents. Certain foods seem to make it worse/better but I am largely still trying to figure that out by trial and error. I have been prescribed pantoprazole and cholestyramine powder to help lessen the looseness of the stool, which may be helping some but it is not lessening the frequency. We tried Imodium before that, which cramped up and bloated my stomach. As well as tincture of opium after that, which made me super groggy.

I experience a lot of involuntary straining when I go to the bathroom. Even though I have to go frequently, it never feels like I’m getting very much out. Due to the straining, I have a very angry hemorrhoid. And the perianal skin is constantly sore and raw despite my efforts to use hemorrhoid creams, perianal skin creams, and the use of a bidet to lessen the harshness of wiping with toilet paper alone.

Some of the most distressing symptoms I feel is a pretty constant crawling-type feeling in the rectum/anus area. It’s more pronounced and intense when my jpouch needs emptying. It feels like a crawling, tingling, itching sensation internally and drives me absolutely nuts. It is however my cue to go to the bathroom.

I also experience not constant but frequent abdominal/pelvic pain, discomfort, or sharpness mostly on the right side just below my stoma scar. It’s an internal feeling, meaning it’s not my actual stoma incision itself, although that area is still tender due to healing from surgery. I have had a central line in since before surgery to help me with staying hydrated. I administer hydration infusions every other day at home with a nurse coming to the house once a week to change out the PICC bandage and skin care.

So far since surgery, my quality of life seemed to actually be better when I had an ileostomy pouch. As it stands right now, I have to live and die by the access to a bathroom. The nighttime bathroom visits disrupt my sleep. And the anxiety of needing clean, comfortable access to my toilet limits my ability to leave the house. I’m not trying to complain, but man, this whole journey has really been exhausting.