People vary a lot. My diet hasn’t changed at all with my J-pouch.

For the first couple of months after takedown, I had to avoid tomatoes because of butt burn. Aside from that brief period, my diet hasn't changed.

My diet has totally changed. Everyone is different, but I had to eliminate many things.

Spicy foods, red meat, potatoes, soda, nuts….. just to name a few 😟

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.

I find the comments about bad reactions to tomatoes to be very interesting.  I had many skin problems and after a few years and many doctors and finally some testing, I found out that I am allergic to tomatoes.

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.

Wow!  I wish my j-pouch could be fooled into thinking that it is a colon.  Maybe it needs hypnosis!  Of course, if it thought it was a colon, it would probably develop ulcerative colitis like the old one did.  Ain't no winning in this game for me.

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.

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!

I can hold it but if I get gassy/watery stools, it can become uncomfortable to wait as long in between BMs.  The pouch doesn't hold as much because it doesn't stretch or take out water like a colon does.  At least mine doesn't!

@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

I’m also still constantly adjusting and learning how to best care for this strange reforming of the guts, which is exciting. There are always medical advances that may eventually address our condition more appropriately, especially as it becomes more common.

@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.

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

Thanks for your responses. I would like to get as many people’s experiences with the J Pouch as I can. I know everyone is different and I will not know what mine will be like. It helps me to get different experiences so I have a better idea of what to expect. Thanks again!

It takes less than 15 seconds to empty my pouch. Emptying, cleaning, applying barrier ointment and hand washing all take only 5 minutes.

Since I use the barrier cream, I rarely get butt burn.

Control is not a big issue. For weeks after takedown, I did have incontinence while sleeping. I solved that with taking 2 Imodium before bed. (I still need to do that).

When my pouch needs to be emptied, I feel a subtle pressure on my anus. I can easily put off the need to empty for a couple of hours.

Passing gas is exactly the same as when I had a healthy colon.

Wow, I'm so jealous of your gassing abilities!  I could visit the restroom far less if I could do it like when I had a colon!  Your pouch is definitely superior to mine.

@Cindy R posted:

I am still thinking about getting a j-pouch. How much does your diet change?

I can eat just about anything. What screws me up is over eating. If I over eat I pay for it later. If I watch my portions I can eat just about everything

The only thing that bothers me are peanuts.

Hi, Cindy.  Note that when members mention emptying their pouch they are talking about their internal J pouch, not the external ostomy bag that would sit on your stomach to collect stool (also called ‘an appliance’).

Emptying a (J) pouch is simply finding toilet, sitting down, and pushing gently to expel stool, just as people with a normal colon do. The amount of time needed on the toilet depends on if you have semi solid stools, watery stools, or solid stools. Watery would come out fast, solid can be just as quick, unless you have very hard solid stools as if constipated. This might take a few minutes. This happens to me sometimes because I have solid formed stools more than half of the time. If you do get a J pouch, you’ll know the urge to use the toilet by the slight pressure, or a sense of urgency. It’ll be different to the extreme urgency that comes with ulcerative colitis. When a J poucher gets used to their new plumbing system there is time to find a bathroom without the feeling of emergency. For the first weeks, months after J pouch surgery there is frequency but you will learn quickly how to manage it by food choices, time of day you eat your meals, hydration, and where public bathrooms are located. Try not to worry about this because there are public bathrooms everywhere.

When I had my temporary ostomy for 12 weeks it would take a few minutes to sit on the toilet, aim the ostomy bag into the bowl and squeeze out the contents, maybe 1 minute, then wipe clean the opening and close the bag, 2 minutes. Five minutes tops?  Once I was in a public bathroom and some fool banged on the door making me very anxious. I would never bang on the door, knowing that the person might be in a situation like an ostomy or colostomy change!  At home,  I learned to do a complete change of the entire appliance and wiping the stoma area clean in 5 minutes flat, and I was out the door, always carrying a fresh change in a zip lock in my tote bag for emergency. A complete change might not be easy / possible in a public bathroom. Simply emptying, yes. The first time I had to do a complete change on my own, without the help of a community home nurse, I wept because it was so alien and it took me 30 minutes. You learn, and you manage. Lay out all your equipment on the bed or bathroom counter on a clean towel so it’s all at hand. Then everything goes very quickly. I kept all my ostomy supplies in a basket for easy access, and I could carry it all from bathroom or bedroom. My ostomy bag would sometimes leak while I was sleeping because I was lying down and stool pools around the stoma instead of falling into the bag. Standing or sitting would always be safer because stool would simply fall into the bag. I learned to sleep with lots of pillows boosting me up, almost in a semi sitting position. Not a great position for deep sleep but I managed and it was better than leaking and having to shower at 2am, but when I had to shower at 2am, I did it. And changed the thick towels I slept on for safety.

If you get a permanent ostomy, keep in mind the expense that goes with it unless you have excellent health insurance that covers all appliances, wafers, rings, pastes, barrier creams, etc. and these will be required for your entire life. With a J pouch, there is also expense if you have issues such as pouchitis and need creams, lotions, probiotics, or prescription antibiotic meds that hopefully are all covered by your insurance, maybe for life, hopefully not. I personally don’t have any expenses related to my J pouch, no meds, or creams, or pro/pre biotics, no special foods, and for this I am grateful. Shortly after I got my J pouch I installed a portable bidet (AmazonPrime!) on my toilet that Saved My Life and My Bum. If you decide on a J pouch, a portable bidet — or even a simple bidet travel bottle — add to the top of your list.

Let us know what you decide. You are doing the best thing in gathering intelligence to make your informed decision.

Thanks again for your replies. Do y’all take any medication to help with your j pouch? Do you use Imodium when and how much? How long have y’all had a j pouch? Has your output increased over time? I’m in my early sixties so I could have more BM than younger people. What is your age range? Thanks again.

Whatever you decide. You will learn to adjust.

I ended up with an end ileo. Never in my wildest dreams would I think I'd be here. But it's ok.  I adjusted quickly.

The J pouch never worked like it should. Long long story.

I had to have it removed.  And yes. It's alien at first. The end ileo. But after awhile it just becomes part of who. You are and what it is.  One.

As for supplies as mentioned above. I ordered stuff while working with good insurance so I have enough to last for many years as I only change once a week. Or more if I leak. Which doesn't happen often.  So a box of ten bags and wafers lasts more than two months. I have stacks of supplies.

With either you have to adjust your diet. I found that with the end ileo I can eat almost anything. My j pouch was sensitive to stuff that I can eat now.

It all comes together in time. If your pouch works it's the same as I read in here.  Time. It can be your best friend.

I wish you the best either way.  It's not a situation any of us want to be in but we end up  there and we have to figure out what's best for yourself.

Then as with myself you can move on and enjoy your life. There is life after you can get something to work. I found my way. It was a long road. But it's all in he past.

Keep this in mind.

I have an end ileo. But my rear end was kept intact.  I still have all the gear to have another j pouch if I ever want to try it again. Which I won't. But keep in mind they can leave everything in place if you don't like the end ileo.

Richard.

I had an end ileostomy and the a loop ileostomy. The end ileo was so much better than the loop ileo. The loop caused a lot of leakage for me. Everyone is different.

Very interesting experiences with both ileostomy and j pouch. Was wondering if anyone had or has issues with fistulas in particular recto vaginal fistulas since no one mentions this issue. I would appreciate if anyone can share experiences or issues with rectovaginal fistulas.

@ceew posted:

I had an end ileostomy and the a loop ileostomy. The end ileo was so much better than the loop ileo. The loop caused a lot of leakage for me. Everyone is different.

I had a loop too. It was what made me think I don't want an end. But they cannot and should not be compared.

Loops are terrible.  Leak. Burn.  It was bad. I think the Dr's know this. But they are temporary fixes until the next procedure.

The loop I had to change all the time. Couldn't figure it out. The end. I figured that one out fast  and it behaves

Lol

Richard.

Thanks again for your replies. Do y’all take any medication to help with your j pouch? Do you use Imodium when and how much? How long have y’all had a j pouch? Has your output increased over time? I’m in my early sixties so I could have more BM than younger people. What is your age range? Thanks again.

2 Imodium before bed.

Over 6 years.

My output has DECREASED with time.

I was 38 when I got j pouch and I'm 44 now.

59 yo.

Pouch 37 yrs this fall. 

Turning 60 next month.

Always believed in eating & drinking everything.  Lived in the US and Asia.  Used to eat street food in Bangkok and Jakarta.  Yep, I might have paid for it with more BMs and/or BB, but it's my life and I want to live it.

I dislike the, 'everyone is a different mantra' ... probably true but feels like an escape valve nonetheless.  To me, it's not about how well your body might handle the surgery but how you choose to live and basically give a damn to any consequences.  I know folks will disagree with that approach but my j-pouch follows me, not vice versa.

No meds.  Eat all foods.  Drink alcohol.  Some pouchitis 'spells'.  A couple of blockages in 3+ decades.  Have no doubts the pouch will deliver for another couple of decades.  Wouldn't have it any other way.  PM if you want to connect.