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Also read updated posts & watch out for Sugar Alchohals such as sorbitol and mannitol. My nutrionalist and I discovered my flinstones vitamins contain sorbitol which tears me up and inflates me like a balloon. Every single person, I don’t care who you are or what experience you’ve had, gets gas from sorbitol. It simple does not get digested and turns into gas. Period.  In anyone. 

Pouchbro,

I don't mind realness. I'm just hoping these symptoms are temporary, not permanent. No offense, but I don't want to deal with this for 2 years. I understand it is a possibility, but I don't think anything is wrong with getting my bases covered, checking for pouchitis and other things just in case there's an easy fix.  I can check for sorbitol...that makes sense, thanks for the tips.

As for the milkshake, it didn't really bother me much. I also ate cheese without any problems. I don't seem to have any problems with dairy. Maybe a little gas?But again, very little (and fairly easy to deal with) compared to what I was getting. Though, I will admit I don't typically drink a lot of milkshakes. I just needed something to get me going and I was trying to avoid solid food. 

I tried some chicken nuggets and fries for lunch. (Not all of them, just a few bites.) No problems yet, except the leakage, which seems omnipresent right now. The chicken is protein, but seeing as it is fried, I assume that is a carb? So, I'm just trying to eat a few carbs and see if it sets me off so I know if I need to cut them out. Are there any other food groups I should test? I don't mind making dramatic changes. But I am only going to make them if I see correlations in symptoms and there's a benefit to cutting them. Otherwise, it seems like a bit of a sad loss to cut them without checking to make sure they're the problem. I know these aren't great food options, but I am trying to experiment now and see what causes problems.

I'm sorry to hear you're hospitalized...I hope they figure out your gas problems (and mine!) I really think it is a lot to live with, def too much for me, so I imagine you're a very strong person to deal with that for this long. 

Woogy, 

I'm glad you're feeling good on that regimen. I will gladly take antibiotics if it solves my problems. I just started the Flagyl, and I'm hoping it works. 

Aimc, 

Thanks so much for your comment! <3 I really appreciate it. I'm hoping it is an issue that can be easily solved, but either way, I'll let you guys know how the antibiotics and the scope goes. 

Most fried foods turn into pure liquid for us followed by butt burn. The people who say they can tolerate these things have had there pouches for quite some time. I’m really not trying to be a Debby downer, I want to help as I suffer from the same problems. Flagyl will cause you more gas and leakage at first (trust me I’m hooked up to continuous Cipro/Flagyl IV as we speak) so be prepared for that. Also if you put ketchup or sauce on your nuggets or fries, there’s another enemy. Most of us can’t tolerate sauces & high fructose corn syrup is the main component of these sauces and ketchup. Also earlier you said something about tomato soup? That would cause me so much butt burn I wouldn’t touch it. I can hardly tolerate any tomato sauce. Too acidic, remember part of the colons job was to absorb your acids and excess water. 

Last edited by Pouchbro

I would agree with Pouchbro about the fried foods and tomato based sauces. Both give me butt burn for sure. As do spicy foods. They burn on the way out after I've eaten them (although I've found the gel inside my aloe vera plant worked really well to cool it off. I'll have to try it again to see if it was fluke).

Regarding the carbs (starches and sugars), I think it's not so much that they have an immediate effect. It's more a longer term issue of developing an imbalance of bacteria which could lead to pouchitis. This I think would be especially the case if one's not taking in probiotics in food or supplement form. That's my understanding anyway. 

Liz, I had my take down in 2/2019. Honestly the first months for me was like hell.  I was in the bathroom most of the day and I did not eat that much.  Second month got a little bit better but my butt burn burn burn. I finally feel like myself again 2 months ago.  You will feel better for sure but it takes time- time. Food is very important, everyone is different but I can't  eat anything tomato related.  It burned me inside -out. I also found vegetable and fruits were giving me a lot of gas. so i drink smooth ( Veg and fruits ) instead of eating them.  Discussion and posts were very helpful because we all have the similar experience.  You will get better but it takes time.  Re-introduce each food to your new body and see how it react before you put more food to your body.  You will eventually know what you can and can not eat.  It takes time.....

Thanks for the advice Little Rain!

Well, I've taken only two doses of the Flagyl (it is a 3 pills/day prescription for 10 days) and as of right now, I feel 100% better. I had some grilled chicken alfredo w/ pasta and bread for dinner with cheese. Some stomach sounds, but zero gas, no cramping, nada. I don't want to call it too soon, so I'm going to wait a day or so before I celebrate, but I feel sooo much better. I did also start digestive enzymes today, but I only started feeling better about an hour after my second dose of the Flagyl, so I'm pretty sure (fingers crossed, it isn't a fluke) most of my symptoms were from the dreaded pouchitis. I can't believe I developed it so soon...I'm only about a month out from takedown and the first two weeks were not bad (not perfect, but not bad), but I must have started developing symptoms of pouchitis around week three and not realized it. 

The past two weeks were hell. The gas exploded to the nth degree. And then night before last with the UC-like urgency and fever, being unable to sleep...still having some symptoms even without eating solid food...

I'm a bit worried that the suddenness of the pouchitis means I'll have chronic pouchitis. But I am very pleased that that horrible two week span wasn't my "new normal" after all. 

I didn't expect roses and rainbows, but I knew that something wasn't right. I felt too bad for it to be normal. Thanks to all who replied! I'll update with scope findings just in case, and (if any other new pouchers are reading this and have similar symptoms) I urge you to go to your doc and ask about pouchitis. 

All just stands to remind me that we know our bodies better than anyone else does, and we usually can tell when something is wrong. 

<3 

Well, it is complicated. And I am back to being fairly irritated about it.

I finally got back in with my GI because (although I felt great on the flagyl and had no problems) I developed symptoms again immediately when I finished my week long dose. I am actually considering making another post asking for advice, but hopefully you guys can answer here and help...

My GI wanted to test me for C-diff. I'd had it before my colectomy, and it had been successfully treated with a lot of Vancomycin. I was tested in the hospital before surgery (to rule it out) and that test was negative, so I did not have it directly preceding surgery.

So, at first, my surgeon (and I) assumed pouchitis because the flagyl treated it. But when I went back to my GI again with symptoms, he tested me for C-diff and the test (I just fount out) came back positive. I'm really upset for multiple reasons--1. C-diff is contagious and my j-pouch is leaking so much right now, I feel so bad that I may have accidentally exposed people to C-diff. I didn't think I could really get C-diff without a colon? 2. My doc prescribed Vancomycin again to treat it, and the vancomycin hasn't worked at all. I'm immune to it now. Or the C-diff is, so I'm back on flagyl.

But the flagyl isn't working as well now as it did before. So I'm horrified and really concerned that I'll lose the pouch because of untreatable mutating C-diff. 

Also, I'm leaking a lot now, all the time. Not just liquid, but bits of mushy crap. I can't feel it when it happens, so I never know when or why it happens. I assume it is the C-diff, but I'm not having cramps anymore. Just horrible, disgusting, demoralizing leakage. I'm really upset about it. I never leaked with UC, even when I had C-diff. I take Lomotil, but it doesn't help. I'm worried that (on top of the C-diff) the surgery messed up my sphincters somehow and now I'll be incontinent forever...or maybe the leaking isn't the C-diff, but a diet thing? I have been drinking one cup of coffee/day. Could that cause leakage like this? 

Really not feeling good about the J-pouch right about now. 

There are two pieces of good news here. The first is that you now seem to have a diagnosis, so treatment choices can be directed properly. It’s also probably a better diagnosis to have than chronic pouchitis. The second is that in the last few years an effective way has been developed to treat C. diff that doesn’t respond to Vancomycin. Fecal transplants are very successful In getting rid of stubborn C. diff infections.

Your test before surgery may have been a false negative, FWIW. Good luck!

Lizadair, ask your doctor if Florastor can help you with c-diff. Google c-diff and Florastor so you'll know what to ask your doctor. Good luck to you. It's hard. Try not to feel bad or worry Too much. Stress can play havoc on your immune system and health. Your body seizes up, holding tension and adrenaline and cortisone when you're in stress. 

skn69 posted:

Try dissociating your diet to see if it works for you. You separate your proteins and your carbs into separate meals...meaning you can eat anything but not together...Chicken and salad or veggies but no rice or potatoes, ditto for steak or fish with veggies, cooked or raw or in a salad but not bread, cake, potatoes or rice....when you want carbs you can have pasta with tomato sauce but no meat or cheese...ditto for potatoes or rice...to be eaten with veggies but not proteins...it is very simple once you get the hang of it...fresh fruit and fruit juice in the mornings or alone but not with a meal or at the end of it...the result is that your digestion is simpler and easier and you make less gas, less cramping and less  bloating.

Sharon

THIS IS SUCH A GOOD TIP!!! I am going to print this out and put it in a few places. I have had my j pouch for about 13 years and it's crazy.. that I just forget about this tip.. BUT IT IS SO TRUE. It's like my body is really happy when I just have FISH for lunch. If I am still hungry in an hour or two, I eat some veggies (mostly cooked... !!!) , Etc. etc. So true about the pasta... plain pasta with tomato sauce.. or plain pasta with a little olive oil and veggies... or plain pasta with cheese. ETc. etc. SO SO TRUE. A little fruit in the morning. Wait. Oatmeal a bit later. Although sometimes I can put a small amount of fruit in oatmeal. Etc.

 

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