Ileostomy Reversal: One-Year Journey and Seeking Advice for Long Car Trips

I have been reading blog posts from people who have ostomies, and who have had reversals. It's tough either way. Here is my current status after having a 3-month ileostomy reversed (following rectal cancer treatment with chemo and radiation).

I had a few problems with the ileostomy, many of which were resolved due to advice from fellow ostomates. Thank you all for your support -- I could not have learned to work with the pouch without your help. After 3 months, the doctor was ready to "take it down." I did not know what was in store for me after that point.

Like others, I thought I would be completely healed in about 3 months. Because I am a male, with less space in the pelvic region, I do not have a J-pouch -- I have a direct connection (no rectum). I didn't realize everything that a rectum does, but I sure miss its function! The colon seems like a radiator hose (thick and strong) and I often lose the battle between my colon and my sphincter. The surgeon tells me that the colon will dilate within 2 years of surgery and that things should be fairly normal. In the meantime, I have up and down days.

Foods I can tolerate pretty well -- white/brown rice, rice noodles, salads (be near a bathroom, though), lean beef, turkey/chicken white meat, chili, steel-cut oatmeal (that's the best), fresh and steamed veggies, honey (but not sugar), soy milk, good whiskey, a little red wine.

Foods with which I struggle -- pasta, "empty" carbs, potatoes, onions (the worst), beer, ice cream, etc.

I've read other posts where people find relief by eating marshmallows (all sugar? really?). I also read about keeping a low-fat diet, but I find most of my success comes from a South Beach-type diet (fiber with the carbs, not high fat, though).

I am glad I had the reversal, but it is a much longer road than I thought it would be. At first, I wished I could go back to having the pouch. I could predict things then. I have entire weeks where everything goes well, then I have a "set-back" week. I haven't found a great way to prepare for long trips or playing music (I play guitar), except to skip the meal beforehand. Afterward, I have an "attack" if I wait too long. If I skip dinner (like last night), my bowels will start to eject lunch around 11:00 at night. I was not near a bathroom, so I soiled my pants (it's nice to be able to say this to people who understand what I'm going through). I've worn Depends for a year now and would love to switch to regular underwear soon.

Who has some advice for me regarding long trips in the car? I am driving 14 hours from Baltimore to Maine in a week and would rather not stop so often or risk stinking up the car.

I'm sure my new "normal" will be unlike the old one -- I just need to wait another year to find out how it will be.

Keep up the good work, Osto-friends. There is no place else for us to be perfectly honest about our troubles (who wants to hear about crap, anyway?).

My advice? Stop as often as you need to. You have got to make allowances for your condition while it is adjusting. I don't think there are any good shortcuts in this department. Good luck!

I can only say I wish you well... I'm going to ask you to share your story on a page I created on Facebook called J-pouchers Tell Your Story... Go there and share... What you are going through will be helpful for others yet to make the decision.

Can I ask why you chose the J-pouch? Was the ostomy unbearable? Was the doctor leaning you in that direction? I'm sorry if all of this info has been shared by you, but I haven't been on here for some time... I'm trying to catch up. Whatever you can do, I certainly appreciate it if you post on the FB page... Michael

He doesn't have a J-pouch, Michael.
He has a direct reconnect like I had in 2004. My biggest problem was pain rather than accidents, but I had my share of those too. I found eating tropical fruits like pineapple and papaya, as well as taking probiotics (bifidus especially) helped me. Unfortunately, the radiation damage was too severe, and my anastomosis backed up until I developed mega-colon and in 2009 opted to have a permanent colostomy rather than risk a rupture and peritonitis.
I had difficulty sitting for long periods of time, like in the car, and always used a "donut" cushion for comfort - also Anucort rectal suppositories to reduce inflammation. Another option is to take a very low dose of Imodium (like 1 or 2) to slow down the process, but be careful not to get constipated! I wish you all the success in the world, my friend! :)

Some are probably not gonna wanna hear this but again here goes........Yes, I did think he had a jpouch and Pinky thanks for pointing that out.......Everyone probably knows by now that my opinions come from a negative bias of the jpouch and doctors for what they don't tell us, but if it's negative for a jpouch, it's only more negative for a direct connect....The direct connects from what I know and who I chat with do not work, or for that matter do not work well.... My point in this thread is the need to have all the right information so that we can make an informed decision........Would Eehuffman have gone through with surgery if he was told he will probably be in diapers for two years and then maybe his bowels might work well........Would he have gone for surgery if he was told all the foods he won't be able to eat, and all the accidents he might have, and how difficult his life will be for two years and then maybe his rear end would work okay........It's my opinion and belief that we are being told all this nonsense from doctors who only know it from a textbook........and do not live it or know what it's like to live with poor bowel control..........And lastly, I do not trust doctors for the simple reason, and imagine this for a moment if you will.....you go into the hospital to get something fixed, and the response is, your life will be difficult for two years and maybe after the two years you will be better....I don't believe we would allow the procedure to go forward with truths like that being shared by a doctor, and that's why they do not tell us the truths..........They are not us.....We need to speak the truth as I feel for Eehuffman............I too wore diapers and if I can share what that did to me emotionally was even more debilitating than the illness itself, but doctors don't tell you that either...........I will now stop....sorry to those who might not like my words, but this is my truth....

Hi. I had an ileostomy 18 months ago for bowel cancer. After a year of problems (blockages due to adhesions and a parastomal hernia the size of a melon), I had emergency surgery. They repaired the hernia, re-sited the stoma, and separated the adhesions. During these 18 months, I have had to fight my corner against having a reversal. In fact, my previous consultant would only repair the hernia and adhesions if I agreed to have a reversal at the same time! This was despite the fact that I was being admitted to ER on a regular basis with blockages, intense pain, and dehydration. In the end, the hernia twisted - hence the emergency op (luckily done by a different consultant who I have now switched to!) I agree that a stoma is not the prettiest thing to look at, and a full bag can be a nuisance. Leaks can be embarrassing (especially if you've just turned up at a new client's house!), but generally, I find I am in control!! I have not yet read or heard from ANYONE who has had a reversal where they could say 6 months down the line that they felt in control of their body and didn't need "nappy pants". My previous doctor skipped over that bit when he was trying to persuade me. Even when I asked him directly, the most he would admit to was a "slight" problem that would "resolve itself quickly". I'm quite certain that if he had been the one who was likely to mess himself several times a day (or even only once a week!!), then he would have had a very different attitude. I have no idea why he was so pushy for me to have this operation, but I certainly felt bullied and was very upset by his attitude. He also never mentioned the pain that I've heard about caused by the digestive juices burning the anal area - basically a severe form of nappy rash. Well, I know how much it can burn the skin on my stomach - and that area is FAR less sensitive than my backside! Want to have a reversal? No thank you!!!