Ileostomy Reversal - Concerns About Urgency, Frequency, and Sleep

Hi! I am new to this forum today and have been reading as much as I can about reversing an ileostomy by attaching the ileum to the rectum. Since we are all unique, I would also like to pose a few questions.

First, a little history. I developed C. Difficile in late November of 2022. After mucking around with antibiotics, the decision was made to remove my entire colon on 29 December. This was followed by a bout with pneumonia and then pancreatitis, all of which bought me a 3-month stay in the hospital. I am now home with an ileostomy appliance and am building my strength back to the point where I can handle the surgery for reversal. Therein lies the rub. To do it or not to do it.

I should mention that I am a 75-year-old male.

My surgeon wants to do the reversal this October, if my strength has returned to an adequate level. He has been frank about issues I can expect to face following the surgery. At least in regard to frequency and consistency of bowel movements. And now that I have lived with the ostomy these past months, I can see the possible issues with incontinence. This is the one that worries me the most. So, my first question has to do with that. How much is urgency an issue? Has anyone tried pelvic floor exercises to control urgency?

My second concern is the frequency of bowel movements. How often do you have to use the toilet once things have stabilized? I've had colitis in the past and am familiar with being a slave to the toilet. I'm just not sure I want to relive that.

Next, is sleep an issue? Given my age, I already have sleep issues. So, I am not greatly concerned about this. I am already used to emptying my ostomy sometime in the early morning hours. But, I am worried that I would have to void my rectum more frequently. I suppose the upside would be that the process is not as complicated as emptying an ostomy. :-)

Thanks for reading this far and for any advice you may wish to impart. I'm still new to this journey and it's been nothing if not interesting so far. :-)

Hi!

Sounds like the past few months have brought you some changes, huh?

Did your surgeon already make the new connection when your colon was removed? You retained the rectum and anus?
What type of ileostomy do you currently have? How's that going for you?
If it's the same as mine... ileorectal anastomosis not a J-pouch I can answer some questions.

Is your surgeon pushing for the reversal?
I know the amount of rectum left is important for it to be successful. There's a name for if the length is short and the complication it can cause, I'm blanking right now, if I remember it I'll come back and add it.

I did pelvic floor therapy in between surgeries. One of the goals was to be walking a mile every day. Now post-reversal I'm back in pelvic floor therapy. Making sure those muscles are strong before a reversal is really important.

I am never a textbook case and I haven't been with this reversal either. In the beginning, you're told to expect to be going all the time, I never had that issue. You're told to expect to be going about 4-6 times a day once things settle down. I rarely get to even the lowest number, but I'm not the norm. I'm also not a great eater, maybe one day I'll wake up and that part will magically be all better. If I ate more often like a person typically does, that would most likely increase frequency too.
You're a few years older than me... but I gave birth to 2 children so I'm not sure if that evens things out a little or if age trumps all in this scenario &zwj

As my schedule is getting more full again post-surgeries, I am running into scenarios where I am stressed trying to map out bathrooms, situations I don't have control over, trying to time when I eat when I do travel. I'm re-thinking how to do a trip right now because I don't feel like stopping at a rest area in the middle of the night with one of my kids. Being a woman by yourself at night with a kid isn't a scenario you'll need to think through, but for me it is.
Not my surgeon, but my motility specialist said I would've aged out of being able to handle the surgery well and if I was going to do it I needed to do it while I had my age on my side.

Let me know if you have any more questions, Jodie.

Hi Mose, just type "reversal" in the search box and you'll get a lot of info. Just be cautious of the term "reversal" here. Make sure what you read is exactly the same circumstances that you are addressing.

Hi Mose, welcome to the site. I've had my ileo for 30 some years and with some trials and tribulations, I still wouldn't go back to needing a bathroom in a hurry like before the surgery. And then there's the more surgeries you have, the more likely to have scar tissue problems.

Hi Jodie. Thanks for the detailed reply. My rectum and anus are intact and I currently have the ileum attached to a stoma and am wearing a bag. The only missing piece is the colon. My surgeon wants to do the reversal this autumn, if I am strong enough and things have healed properly. But, he has not been pushing me to do this.

I too am concerned about travel issues. I have one trip I make every year where I drive over 800 miles in a day. That equates to about 12 hours. Fortunately, it is mostly all Interstate highway and, after 30 years of making the same trip, I know where all the rest areas are :-)

My biggest worry is incontinence. But, I am getting a handle on how to keep my stool from being too watery. I assume that is the biggest contributor to incontinence.

--Daniel

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Thanks, Axl. This is one of the things I picked up early here. It's been hard to find people that have had the same circumstance. I am in my situation because of C. difficile. I have yet to find anyone that has contracted C-diff and had a colectomy. So, I do keep a healthy supply of salt grains. :-)

--Daniel

Hi Ron. Thanks for the reply. I have only had my ileostomy for 5 months and I was doing quite well before being struck with C-diff. However, I have had previous bouts with IBD and am quite familiar with bathroom urgency. That is why I am concerned that reversal will bring that back in spades. However, from what I have been reading, it can be a matter of different strokes for different folks. Sure would be easier if anatomy was the same for every person. :-)

--Daniel

Thanks. My surgeon did tell me how much rectum was left, but that was early in my hospital stay and I don't remember what he said. I will ask him during this next appointment.

--Daniel