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I will say this. The biggest issue I have after going from an ostomy to the jpouch is gas. With the bag it can be burped and provided there is room in the bag gas easy goes in. With the jpouch the gas builds up in you and for most of us requires a trip to the toilet. I wish I could fart or press a button to just release the gas.

That being said, I don't want to go back to an ostomy and trying to limit what causes me gas has helped. We are all different.

Good luck

I can eat anything I want but a few things will create havoc on my output….. spicy foods will make things uncomfortable and deep fried foods will turn my output to liquid.  I don’t drink alcohol like I used to but notice if I drink too much my output also goes to liquid.  Everything else is ok for me and I am great full as I am a foodie.  Even though the jpouch took me a long time to find my “normal” I now enjoy it compared to the “bag of doom”….. I had a really had time with my temporary bag..

My pouch is way more sensitive and easily irritated than my colon was.  I only had the stoma for a short while but mine was always irritated.  With the pouch, I have had to eliminate wheat gluten and dairy.  Peppers make me extremely gassy so I take it easy on them.  I'm always somewhat gassy regardless of what I eat. Gas meds don't help at all, though I have never tried "Beano".  Probiotics and psyllium do help.  Red meat and alcohol cause an immediate inflammatory response.  I cook my veggies because raw ones make watery stools.

I don't have inflammatory bowel disease and find I can eat almost anything.  I pay with extra toilet trips for certain things such as tomatoes  and I find I"m more lactose intolerant since the pouch.

I agree with the "gas button" idea.  I have completely lost the ability to discreetly pass gas and that now requires a bathroom trip.  I'm living life to the absolute full though and am very very happy with my pouch.  If I ever have to go back to an ostomy it won't be the end of the world but I prefer my pouch.

The way you eat will likely change, at least for a while.  The first year was a period of adjustment for me. I had to eliminate insoluble fiber, alcohol, tomatoes, and seriously reduce white flour and sugar.  

Some centers recommend a Mediterranean diet for j-pouchers.  Some suggest a diet high in protein.  The advice across the board seems to be to limit too much sugar and foods heavy in processed carbs -- white bread, pasta, etc.     I'll be two years from takedown in June and I stick to the Mediterranean diet but limit insoluble fiber.  

It is important to have your pouch constructed by a very highly experienced j-pouch surgeon. Otherwise mechanical issues could occur that can impact what you eat.   But with a well constructed j-pouch and a little patience, you can probably expect a varied healthy diet.

When I had my temporary ostomy for 10 weeks while waiting for my reversal, I avoided fibrous foods such as lentils, chickpeas, grains, nuts, seeds, spicy, and acidic because it hurt my stoma and made me cry real tears when these foods exited into the bag and it caused frequency. I did eat fish, rice, pasta, cooked spinach, half a bagel with peanut butter, soft boiled eggs, chicken, lots of protein to help my inside wounds heal faster. As soon I had my takedown I had to learn, slowly over many months, what I could eat. Seven years later, I can eat anything EXCEPT refined carbs because it causes frequency and watery output. For me, refined carbs include croissants (why, oh, why!!) doughy pastries, ice cream. Anything highly refined and highly process is pure sugar to my pouch and makes it grumble and bubble, loudly.

My diet hasn’t really changed because I’ve always enjoyed fish (Costco has excellent frozen, portioned fish — salmon, cod, etc., just avoid or limit the breaded processed kind) basmati rice, broccoli, carrots, cauliflower (thanks, again, Costco). I drink lots of water 2 litres per day, I cup of coffee per day with cream and pretend-sugar Stevia. I avoid insoluble fiber because I go to the bathroom so often I don’t want to push my insides even more. I choose soluble food more often and cook all my veggies. I don’t eat raw anything because I can’t process it and need to avoid blockages, and I chew food very, very well. Yesterday at lunch, some raw lettuce slipped by me and I had some frequency that evening. For me, I don’t need insoluble fiber anymore, which can cause some constipation, resulting in straining or pushing. I can make solid poops more than half of the time with no problem, and my surgeon was surprised by this but it’s true! My j pouch now thinks it’s a colon. Google soluble and insoluble foods so you’ll have a better idea what you *might* have to limit. I love my j pouch, it saved my life, and I do everything I need to protect it for the rest of my life. Good luck to you.

Expect around 6+ BMs per day, although YMMV.

If you have good anal sphincter control now, and the pouch is built correctly, you should not have accidents. I have very very minor leakage, so I typically have a cotton ball btw my cheeks most times. I could probably do without it, I am just used to having it there.

when I eat the wrong foods, that produce gas or watery  BMs, the urge to go becomes very strong as the pouch fills up, to the point that my only mission in life is to relieve myself.

Having experienced the alternative (albeit for only 13 weeks), I would still choose the pouch every single time!

@Cindy R - I was also very concerned about control and seriously considered going to an ostomy rather than a pouch.   During the temporary ostomy I thought I could have gotten used to it and did like the control it provided.   I still can't say for sure that a permanent ostomy would have been inferior to the pouch.  Doctors will say J-Pouch is the the "gold standard" but it's a highly personal decision and a skipping the pouch in favor of a permanent ostomy is not a crazy choice to make.

Here is my pouch experience: It was rough at first after take-down. The frequency was exhausting and the pain from the burning was no joke. Diet was initially limited. Sleep was interrupted.   It took a while for me to get to a point that I did not regularly question my decision.  But I got there.

As for leaking, there is more of an issue with leaking if a mucosectomy is done, as in my case, and it is primarily when I am in deep sleep. I wear a pad at night just in case.

Even with good sphincter strength and pelvic muscle control, there can be leaking related to issues like cuffitis (for folks without a mucosectomy who have an actual cuff) or other pouch inflammation associated with bacterial overgrowth.  I take antibiotics for this and have no leaking at all when the inflammation is controlled.  Out of habit formed in the early months I wear a panty liner during the day, just for the extra sense if security  

Urgency and accidents are not a concern. I'm at 5-6 bathroom trips during the day, consistent as to timing if my meal times  are regular.   I try not to eat late in the day, take immodium before bed, and am still up one time overnight most nights.

The thing is that even with these inconveniences, my pouch function is way, way, way better than my colon was.  I'm happy not to have to be dealing with the external appliance and content with the choice I made.

Best of luck to you for a good result whichever course you choose.

Again, everyone is different. I have no problem holding a BM but when I'm asleep, doing something physical (straining etc) it can be difficult. It's all about finding what works for you. I'm still changing and adjusting everything. I would always suggest trying a jpouch as long as your doctors are for it, you can always go back to a bag. I had major irritation by the time my jpouch was ready, my stoma site didn't want to heal together nicely.

Good luck

@Cindy R posted:

Thanks for your replies. Do you have control issues when you eat the wrong foods? I am worried about bathroom trips and accidents. I am worried about control with a j pouch.

After I healed from the surgery, very rarely, and only if I ate something I knew would disagree with me. I can eat a varied diet, but I have to avoid beans, beer, lentils, and raw salad items. (I also have to avoid hot chilli, but that is because it burns on the way out!)

When I did get incontinence, it was only a small amount and usually at night. So I could have avoided night-time accidents by wearing a light pad.

In my experience, the incontinence from the j-pouch was nowhere near as messy as a bag leaking or blowing off. Also it was much easier to recover from: putting on clean underwear and PJ pants and back to bed vs getting up and doing a bag change.

You will learn pretty quickly which foods don’t agree with you. I don’t think I’ve had any accidents since the first year of my j-pouch.

But everyone is different. And anyone can experience complications after surgery, including continence problems.

Thank you for your replies! I went back to the surgeon last week. I need to gain weight before I have any surgeries. I go back in three months. Still thinking on what I want to do. When you have a BM what is the average time in the bathroom? How long does your butt burn after? How does it feel when you need to have a BM? How long after surgery does it take to not have accidents? Once you are aware that you need to go how long do you to get to a bathroom? Sorry, I do have a lot of questions. Thanks again for your help?

The pouch empties fairly quickly. The cleanup takes longer;

pat with toilet paper, use baby wipe, use Balneol lotion to soothe.

when butt burn happens (50% of the time), I have to use my bidet (my best friend) to cleanse. It really works well.

total time, 5 to 20 minutes depending on the situation. Of course, YMMV, and there is no knowing until post takedown.

I would say it took me about 9 months for my pelvic floor to recover and no accidents.

Last edited by New577

All your new questions have no fixed answers. Everyone is different, I never had any "accidents" during the day. For the first week I might have had some leaking at night. I almost never have butt burn unless I have to use public restrooms a bunch. Get a bidet, if you have weird thoughts about them, stop and just get one, you can easily get "cheap" ones that attach to your existing toilet. The feeling I get, telling me I need to have a BM is basically high gas discomfort. If I'm being really physical then I'll need to go sooner. A bathroom trip could be 2min or an hour, just depends on gas and so many factors.

Good luck

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