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I had my j pouch in Nov of 2017 and I have have chronic pouchitis (which is under control with medicine, I‘ll be on it forever prob), kidney  stones (due to constant dehydration), and severe abdominal pain.

I recently started eating more cooked veggies and started an exercise program to try and get back into shape, I’m quite short and about 40 lbs overweight. My stomach pains just sideline me and I feel like it’s really hindering me getting back to feeling good, exercising, etc. I’ve gone to the ER for the stomach pain and they did CT scan- found nothing but referred me to my GI. He humored me and did a recent pouchoscopy, endoscopy (I have Gerd) and also found nothing- pouch is in great condition.

So meanwhile, I’m trying to make some positive changes in my diet but the healthy way to eat is high fiber, wheat, veggies, etc. and I just don’t think I can do that.

Also, this stomach pain is pretty severe at times. It helps to lay down but when I’m standing, it can feel like someone is stabbing me or squeezing my insides. I’m sad that they don’t know what it is- just blame it on gas or adhesions. I feel like that’s not good enough- they have to be able to fix it.

This isn’t the like that I wanted or thought I’d have with a j pouch. I mean I was going to the bathroom 20+ times per day and literally almost died when my colitis was at its worst, so is this better…yes, by far. But I also feel like it’s not supposed to be like this. I have a 5 year old and am constantly saying, “mommy has a stomach ache sweetie, I have to go lay down,” or I can’t catch my breath bc it hurts so bad, or I need a heating pad (which doesn’t even help).

I also have pretty bad butt burn like almost every day. I use wipes at work and bidet at home. I use Balneol to clean at work and home, and then use Triple Paste.

I’m so frustrated, and sad and feel like this whole thing is really messing up my life. How can I get healthy when healthy food hurts me?

Last edited by Bubbapup
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The abdominal pain could be medication-related. What antibiotic(s) are you on? When I took doxycycline for SIBO the abdominal pain it caused me led to an early discontinuation. It could also be adhesion-related, of course. It’s miserable if it never really lets up. If the pain migrates then it could be gas - does that seem like a possibility?

Is the butt burn entirely on the exterior skin? Have you tried plain zinc oxide instead of Triple Paste, in case you’re sensitive to one of the extra ingredients?

A healthy diet for anyone must not include foods they genuinely can’t tolerate. Each of us is different, and our tolerances are different, and it can be difficult to reliably ascertain intolerances, but there’s nothing healthy about following general advice that makes you ill.

If you’re really chronically dehydrated then that will make you feel quite debilitated. There are different approaches depending on what’s preventing you from hydrating well. There are various hydration alternatives to water, different behavioral approaches if you’re just not drinking enough, and ways to manage watery stools if you have them.

Hi there,

Ive pretty much given up on eating really healthy. I just can’t do it. Oh well! We are different now. But I don’t eat junk food all the time. I’ve used the Fodmap diet to help me make better choices for my gut.

I eat small meals and several snacks daily. A large meal does me in. Iceberg or romaine lettuce only. Small amounts of fresh fruit. 1 orange cut up will last me several days. 6/7 pieces of raw carrots or celery with dip. No corn ever! Or peas, they tear me up.

As far as butt burn, maybe the wipes are irritating your skin. Some have bothered me. Try just the water wipes. Walmart brand are cheap and do the job. If needed I use A&D ointment.

I don’t know what is causing your pain. I do know that gas can make me so miserable. Ugh. Sometimes taking a little walk will get things moving around and give some relief.

All the best to you!

I'm sorry you're having such a difficult time. Have you tried getting a prescription for Questran or some other bile reducer? Barrier creams alone are not strong enough IMO to prevent butt burn if it's being caused by digestive enzymes contacting your skin. ... just a thought.

In terms of cleansing, I recently discovered a product called Aloe Vesta that doesn't need to be rinsed and is soothing on the skin. Amazon has it and you might want to give it a try. I like it better than Balneol and it may be cheaper.

And, last but not least, if you are having an excessive number of bm's or leakage, you may need to get that brought down to a reasonable level by using a prescription or OTC bowel slower to give your perianal area time to heal. If you're constantly cleaning stool from your skin,  it will be difficult to get any improvement regardless of the type of wipe or product you use. Your bottom could only take so much and then even water feels like fire.

Good luck and I hope you are feeling a little better today.

Hi there, Sorry you are having such a rough time! I've had times when it's been like you describe, but I found the FODMAP diet turned things around. Then one doctor told me that after all my surgery, I was likely to have an Irritable bowel. So I've added probiotics at night, which help. Hang in there! I hope you have the energy to try some of these suggestions and find small improvements to your energy and gut ache. Glenys

I haven’t tried the FODMAP DIET. I do take a probiotic with dinner.

I was told by my gastro that I can pretty much eat anything I want and that I’m not different than anyone else. I made an appt to meet with a dietician/nutritionist to get more info.

I’m down for the count again tonight - severe stomach pain. It feels like the type of stomach cramps you get before you get diarrhea - like before I had my pouch. I literally didn’t eat anything today to cause my pain. Cheerios for breakfast, had plain pasta, some pudding for lunch, and a chocolate cupcake for snack (falling off the wagon eating healthy). I mean nothing there is crazy fried or gasy, or whatever.

i don’t think I have leaking per say. Nothing ever on my underwear or accidents at night. But it’s like I wipe complete and then 15-20 min later I can feel that I didn’t wipe good- I go back to the bathroom and wipe and there is stuff on the toilet paper. That’s what gets me. One or two bouts of that and it’s burned for the whole night. It feels like the bidet is ripping my poor bum apart bc it’s so rashy. The other day there was blood on the TP bc the skin was so irritated.

i do take colestipol in pill form, so that’s supposed to help like Questran. I tried Questran and couldn’t stand the taste of the powder. I’m going anywhere from 10-15 times per day.

It could be gas- I’ve tried gas ex and no real difference.

Triple Paste is made from Zinc oxide so I would think that’s the same thing? I’ve tried soo many different creams, including AD, thanks for the suggestion. Ilex works well but they don’t made the tubes- just those big tubes and I can’t bring that to work.

The wipes I use are hypoallergenic, non scented. Isn’t that the same things as wet wipes? Doesn’t get much blander than that.

Last edited by Bubbapup

I am so sorry, I know that this is not just a pain but a quality of life issue.

I might sound like I am forever repeating myself but I am the pom-pom girl for K pouches.

Most of the people who get K pouches have either failed J pouches or considerable quality of life issues with them.

Yes, it is major surgery again, and yes, many of us are just sick and tired of all of the surgery and yes, again, it is not a 100% guarantee, but most of us after the initial surgery and recovery period end up with an exceptionally good quality of life.

I'm one of those.

Please check out all of the suggestions made above: diet, and even, if that is what you think is best, an end ileo...but once again, I do believe that we should not be living in forever pain, and discomfort and surviving on antibiotics.

Just my opinion.


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