Ileostomy Reversal: Anticipating Quality of Life After Healing

Hello all: I am scheduled to have a reversal in September. My ileostomy was performed on May 1st this year. I had a rectal tumor removed and the surgeon created a "neorectum" which I understand to be an extension of the colon. That extension will be my new rectum. I have the sphincter still, I believe, but I feel a little stupid that I don't really understand if the sphincter is intact or not. Sometimes I have a hard time absorbing information in the doctor's office and when I ask a direct question, the answer isn't as clear as I'd like.

At any rate, I am now beginning to anticipate the reversal. I will be doing exercises, including an irrigation technique to prep the muscles that need to start working again in the large colon. Practice clenching, they say!

I'm nervous. I read about people who have not had good experiences and I should probably stop googling. On my side is the fact that I'm cancer-free and no more chemo. In addition, even though I'm 71, I am in very good health and take no medications. The nurse says my "new normal" will be that if I had one bowel movement a day before my cancer diagnosis, I might experience 3 bowel movements after the reversal. But that's as much information as I've been able to glean from talking to the surgeon's PA and nurse. I know every body is different
believe me, I hear this response every time I ask a question about what to expect after the reversal
but I wish I could hear more about my quality of life down the road. I know the first few weeks or months will be difficult, but I went through radiation and chemo with 2 hospitalizations for a bad reaction to chemo and that was difficult and I got through it.

So I guess my question is in essence: What will my quality of life be like after healing from the reversal. I want to eat what I like, swim, bathe, hike with my dogs, travel and do all the things an active person enjoys doing. Is that possible?

If you have questions or asked questions and still aren't sure, ask your health care providers again, that's why they are there. My tumor destroyed my sphincter muscle so that is why my ostomy is permanent. However, I'd have to research a lot if I had the choice of being reversed but have side effects, cause wearing this bag isn't all that horrible. &zwj

Hi Knitter, if you're handling your stoma now and it's not giving you much problems, I would seriously consider keeping the stoma. It sounds like downstairs isn't as good as it could be, and you may have the problems I had for 18 years with a J-Pouch - always looking for a toilet, having accidents at night when you can't control things, and having to go to bed with a pad. I love my stoma and it's so easy to look after. I change it twice a week, Monday to Friday, and it only takes me a few minutes to do the change. I love my stoma. Regards, IGGIE

Hey Knitter, I just had an ileostomy reversal on July 20th so only 8 days out. I too had a rectal tumor but was blessed that I did not need chemo or radiation. I can tell you what I have experienced. I hear you when they say "Everybody is different". I was surprised that this surgery was tougher than the first when there wasn't as much done. This could be because they had a tough time with adhesions and almost had to open me up. I am a lot more sore than the first surgery. But this will pass. Now to get to the fun part. Incontinence. They say that the body will adjust and I guess in a sense it has. I did not have a BM until the next night after surgery. Of course I was on a clear liquid diet. They talked about clustering which I have experienced. The first night was awful. Constantly having to run into the bathroom and messing up the bed. I went on a GI soft-low fiber diet the next day and it improved a little bit. So far I have only had 1 day that I was not incontinent and that day I had no BM! I believe it will get better. It may take a lot more planning such as when I eat. The problem is when you get the sudden urge to go you have to get up and go! Don't wonder, just get on the toilet :) I am curious about this neorectum you mentioned. I am going to ask my doctor about this. Sounds like a good thing as they say the rectum is the storage facility and it would be nice if they built a new one! I am wishing you the best and hopefully I will get back on here and tell you everything is good!

Knitter, did they say the name of the type of reversal you'll be having? It sounds like you have some colon left? Googling the name of what I had done is easier than me trying to explain it- doesn't sound the same as what you're describing. Everyone is so individual with how they respond to a reversal- I know, I know, we all say that. Seriously though, the exercises 10 times a day minimum.
I really haven't had a lot of the most common issues but I was walking a minimum of a mile a day before the second surgery. I did physical therapy in between and after and probably again because I still have muscle/other tissue pain. Is your office able to help you find a pelvic floor therapist?

Hi, that's what happened to me - was it squamous cell carcinoma?

I had a loop ileostomy early June with the bulk of my rectum removed. In December they will check and see how well the hook up has healed.

I saw a pelvic floor physiotherapist last week, just in case I decide to go ahead with the reversal in the new year. I had radiation & chemo which hurts the odds of avoiding the syndrome. My tissues were still swollen when they did my LAR.

What other exercises are you doing? I'm fairly active. Walking, biking, light weights.