What to expect post ileostomy reversal?

I had colon cancer and lost my entire large intestine and rectum. I have a bag for two years. My hospital provided psychological counselling for free. Cancer and chemotherapy changes the chemicals in your brain. Medication and counselling made me feel good again. Because my mother has had a bag for 45 years, I couldn't feel sorry for myself but grateful to be alive. Plus I have the option to have my ileostomy reversed, my mother didn't. Now she is 92 years old, I am 66. But now I worry about what life will be like after the reversal and want to talk to people about how my life will change. I cope very well with the bag but I fear that after the reversal I will always need to be close to a toilet. Some say it took years for the "J" pouch (false rectum) to stretch and hold large amounts of waste. Some say the best to expect is bowel movements 10 times a day. Are they evenly spaced throughout the day? Do they occur shortly after eating? Will I awake in the middle of the night? How many times? I talked to people who had ulcerated colons and also had the large intestine and rectum removed. They are different. They had to go to the bathroom 30 times a day before surgery. Now they only go 10 times a day. For them, this is an improvement in the quality of their life. For me, going to the bathroom 10 times a day would be a hardship because I retired last year and my wife and I want to travel the back roads of the USA. I fear that the only way I could do that is to have a motorhome so I have a toilet with me all the time. With my bag, it would be easier and can not decide whether to keep my bag or reverse the ileostomy. Can I help you with answers to your questions? Can you help me with my questions? With love and best wishes to all. Frank (_[removed]_)

I have just read your post and wondered if i could answer a few questions for you. Im 27 and i had Pre Bowel Cancer at the start of this year i had my large bowel and rectum removed and a j-pouch made and ileostomy constructed in April 2008. Last week 14th july i underwent my reversal and i was so worried about the result! i was told to expect to need the toilet upto 15 times a day!! but although in the first few days i was probably going roughly 8 times a day 1 week on im now only going 3-4 times a day and i have complete control i feel so happy with the results and all i would say is take things as they come for the first few weeks as things do settle down in time im very lucky with the speed mine has settled down i have had set backs this week as i had an infection which was very painful but all under control now. Make sure you keep to a very soft diet in the first week but im now 10 days post op and im eating as normal a set 3 meals a day! i would say go for it its so nice not having a bag now, the freedom is great!! i hope this post helps a little xx

Hi I am very pleased to see that others have the same questions and concerns as myself, I am 26yrs old and had rectal cancer diagnosed in march with radiation and chemo, proctocolectomy with jpouch and temp ileostomy. I just had my ileostomy reversed 5 days ago and I think I am doing well with frequency I feel like I need to go everytime I walk but have been goin about 8 times a day with complete control. My only major issue is the burning upon going and pain. I was hoping someone would have an answer to when this might let up a little..its very painful. thank you for any information you might be able to provide me.

Joanna

hi frank, im 34, i had my reversal op last oct, i had bowel removed due to UC, i go to bathroom about 6/7 times a day but with control. i take 1 imodime at night so i get ful nights sleeep. I would go more often in evenin than durin the day, think this is after eattin dinner but i try eat little and often rather than 3 big meals. the only problem id have is the burning no matter how careful i am at cleaning, im hopin this will ease with time

I had colon cancer with an illestomy for two years and then a reversal two weeks ago.  First few days everything out then two full days nothing then surgeon gave me colace and went for a day then home and then from Friday until monday nothing.  Since then 17 to 24 times a day and skinny soft stools about six inches long each time.  I am exhausted.  How long does this last for?  I took two lomitls tonight and nothing still going constantly.  On a no fiber diet for another four weeks.  Need help in a lot of pain stress and discomfort.

hi kathy, i hope things soon settle down. i had a few very bad days about a wk after my reversal but it all settled again. try takin a very bland diet, i find greasy food bad, i find a banana and natural yogurt good and it fills me too. soory i can t offer more help but hope it soon gets better

Take fiber,this bulks you up. I take 15 capsules dailey and it helps a lot. Metumucl is the answer.

For the burning... Calmoseptine The relief is immediate! Most pharmacies carry it, but some keep it behind the counter, so you have to ask for it. Cost is $7.22 a tube at my local walmart...a few cents higher at walgreens.

I have had an ileostomy for 8 years and my questions are similar to yours.

Had reversal in the last week of June 2012. Still have burning when I have bm and for a while afterwards. My doctor says it is radiation burn to all the nerve endings in my rectum..vagina and urinary areas. No ctream or numbing med. helped. I take pain pills if hurt too badly or if the hurt lasts too long. I am fortunate that imodium has worked most of the time. Had rectal cancer May of 2011.

Hi there,

I'm 18 years old, and 8 months out of surgery to remove my entire large intestine after a bad case of ulcerative colitis. I had been experiencing symptoms for a little over a year, during my sophomore year in High school before I actually spoke up about what was going on. I had the ileostomy for about 2 months before having the reversal. My ileostomy experience was a nightmare due to my stoma not being hardly prominent at all from my skin, and so I would get several leakage events a day, and my skin was just being melted away. The ileostomy did not go well for me. After having the reversal, I really am happy to say that I chose this option. Anything would have been better than having the bag (after my personal experience with it) but I truly am happy about how it has ended up. The hardest part of my life with it right now is that I was a star water polo player in high school, so I have  always been fit and able to eat what I want, with no problem. With the reversal, the amount of BM's I have, and the consistency depends almost completely on what I eat, and how much I drink. Because the large intestine is gone, and its primary job was to absorb liquid, the more liquid I drink, the more watery my BMs are, and the faster they go through me. I LOVE McDonalds chicken nuggets, but they absolutely destroy me (I noticed greasy foods are definitely the worst), but I still always order them, knowing I will be in the bathroom more than usual. You just have to pick and choose your battles. I really have my life back, as it was a huge change from being in the pool everyday, eating what I wanted, always walking around without a shirt to show off, but that was all gone once I had the ileostomy, and I have all of those freedoms back now, with the reversal. The amount of BMs does slow down over time for sure. I am going about 5-8 times a day, 6 months out of the reversal surgery, though I do eat a lot to match my physical activity. I haven't tried anything like stool softeners or metamucil though I definitely will to try and see if it changes anything for better or worse.

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How much Metumucil did you take per day? Does the doctor 'okay' Imodium each night?

Had it done and regret it. Want to go back to bag.

What kind of infection did you get?