Hi all,

You guys have been so helpful through this whole thing, so I've got another question for you. I'm a month out from takedown. 4 weeks...and I'm actually doing pretty well (with no diet restrictions, except NO UNCOOKED/UNBLENDED VEGGIES...2 bowls of salad made me very sick for about 24 hours) and I take lomotil every time I eat and before bed. 

The problem is that the gas is terrible. So, so bad. Painful cramps, always related to gas. I can hardly pass it on the toliet, but it is difficult to pass any other way. And I literally have awful gas all day, every day. It makes me go to the bathroom more and gives me butt burn, so I'm willing to do about anything to stop it. But the problem is that I dont know what is causing it. 

I never had diet restrictions with UC. I could eat spicy food without problems, sweets, carbs, milk products, whatever (except for nuts and intense fiber.) Does having a J-pouch mean I have new things I can't digest? My doctors said I could eat anything...but I can't stand the gas.

I'm worried it is pouchitis (because it is constant.) Is it too early to have pouchitis or is it something I should ask my doctors to check for? Or is this normal for 1 month post takedown? If it isn't pouchitis or normal...what is the cause? And what can I take to help?

I drink a probiotic every day, but I can't figure out diet. It seems to me that everything I eat causes it, with the exception of soups and smoothies. I can kind of see a correlation b/w spicy foods and worse gas, and sweets and worse gas. But the gas is there 24/7 all the time anyway. I think it could be related to carbs, but carbs (and proteins/meats) are the only things I CAN eat right now. The only "ok" foods that don't cause my frequency to speed up are starches, meats, and carbs. 

I'm feeling very frustrated. I know if I could get a handle on this, I'd feel great. But I don't know what is normal, and I was told I'd be able to eat what I wanted at some point...not that I'd be back on my UC flare diet....of only liquids for the rest of my life. I would rather take something/medication/ than cut carbs out of my diet (though I could give up sweets and spices for now, if need be.) I'm going to try Pepto Bismol, as I've heard it helps. Should I try something else? Is there no way around diet changes? Whatever info you guys have, I'd appreciate. Help! 

Original Post

First remember that you are only four months from take-down.  You're pouch is still in the process of adapting and you're still learning what you new "normal" is.  Unfortunately, it takes a while for things to ease up. (Sorry, but it took me at least a year.)

Carbs and sugars are gas promoting.  Think of sugar dissolving and feeding the bacteria in you gut.  They have a party and wallah - you have gas. I understand the need for carbs to help thicken things up, but you have to be careful because too much of a good thing is too much. You may want to start a food journal to see what types of food are affecting you the worst.

That being said, have you tried taking Gas X for the excess gas?  It has been my friend when I ate too much of something that caused painful gas.  I also take Beano before eating anything that might be questionable for gas. For example: I take it before eating any vegetable, beans, or oats.  Another thing to try is peppermint tea.  It helps me to settle things down for me.  I love sugar, so I have to be careful I don't overdo with that or I get pouchitis too.

I hope you get some other practical advice from more of our friends here. 

 

Have you tried using less Lomotil? You might notice a difference if you reserve it for when it’s most valuable (e.g. before bed and before going out for a while). Have you tried skipping the probiotic for a few days? Some people find that gassy. Have you tried avoiding lactose/dairy? Some people develop lactose intolerance temporarily after a run of loose stools or other digestive disruption. I assume you’re not drinking carbonated beverages.

It is early days for you, 1 month out, and some of this is part of adjustment, but you can probably make it at least a bit better with some tinkering.

It is early like everyone is saying, but you shouldn't be in that much pain. What probiotic are you actually taking? Probiotics can differ greatly, they can also cause gas pains.

My suggestion is to go on the low fodmap diet and find out what bothers you most, it sucks restricting the foods you eat but hopefully worth it in the end. Lots of info on this site and the web.

Good luck.

Thanks for the replies! 

I drink Kefir every morning, and it is very possible that I am suddenly having a problem with lactose I guess. I haven't cut that out yet, but I am trying to cut out one thing at a time so I can try to figure out if one specific food group is causing the problems (tbh, I think it is just the pouch and everything is killing it bc I always seem to feel awful.)

I tried two days without the lomotil...and instantly regretted it. Not so bad at first, and I don't even think I really need it so much for slowing things down...the problem is that the butt burn got a thousand times worse without the Lomotil. I wasn't going much more often, so I can only assume it somehow helps with acidity to take it as well. My entire uh, canal opening, is red and raw--I have a prescription Lidocaine ointment that is helping and I also use vaseline. 

I haven't tried Gas x or Beano yet, but I will! I may try OTC omperozale, for the butt burn too, and I ordered digestive enzymes to try out on the gas as well. I eat two packs of the metamucil fiber thins/day. But I haven't noticed a difference there either. And I've started eating a banana for breakfast (I really hate bananas, so blech) but it does seem to help a bit. 

I made a beef/veggie stew, thinking that cooking the veggies down really soft would help me, but I'm still having horrible issues with it. Is that normal? Shouldn't cooked veggies be easy to digest? How am I supposed to get nutrients into my diet at all?

I am off sugar now, so no sweets or sodas or anything like that. I may be a little less gassy? But not significantly less. I'll probably start "no carb" stuff today and see if that helps. If there is no significant benefit, then I'll try cutting lactose.

I also bought Pepto Bismol and just started that today, a dose in the morning and in the evening, as I read that it has helped people with gas. Maybe I am doing too much at once, but I really want to feel okay. It doesn't have to be perfect yet, but I am very sick of being sick and unable to enjoy things.

Is this normal? Did all of you deal with this right after takedown? Or should I be worried?

Hi lizadair, so sorry you are having problems. Gas seems to be the enemy of our j pouches. I use Beano all the time. Gas x never help me, though peppermint tea did give me some relief. If you cant expell gas on the toilet, try laying on your stomach and rocking slightly side to side. Also try laying on your left side. Since it's early days for you, you might want to wear a pantiliner when you try these things. I think we've all been through this, but it does get better. I know it's hell until then. Do try to try all these different things you've been told one at a time, or you will never know what works for you. Good luck to you. I hope you find some relief.

Aimee

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

Have you been able to determine it's not a leak? Do you still have the discharge in the vagina?  (as per your other post)  I had a fever and just felt unwell with an undetected leak shortly after surgery that resulted in the fistula. Although I also developed pouchitis early on so it's hard to sort it out. (I still maintain the pouchitis was due to the clean out of the bowel followed by a diet of sugar (fruit juice and jello) and no probiotic...a recipe for bad bacterial production) . I also developed an 'autoimmune rash' all over my legs.

I'm hope you find a quick resolution and some peace. 

I have been fighting the Gas Battle for over a year. Read my posts, it likely wont let up much, we just have to live with it and learn to pass it. Probiotics can cause gas, along with starches and carbs. Eating carbs is like eating sugar a member here (Scott F) explained this to me. Carbs and starches will turn into sugar after digested and ferment into gas. Hopefully you find a solution, if you do please share. Now excuse me while I go pass gas for 20 minutes straight.
Also it sounds like your trying way too much at once, slow down. Kiefer, pepto bismol, the wafers, etc. All of this could cause you mord problems, I suggest cutting things out one by one until you reach a desired state (your always going to have gas, and without the extra 5 ft of your digestive tract (colon) there is no where for it to go besides out. Also Beano contains Sorbitol which causes gas and Gas X is innefective at stopping gas production It is also known as Simethicone which only breaks up small gas bubbles into larger ones which are easier to pass. Again focus less on what can stop the gas and focus on what is causing it. Again I have been suffering from extreme gas for nearly 2 years, if you can think of it I have probably tried it. I relieve my gas by laying on my stomach or getting on all fours, try it out it does wonders for me especially after a hot bath.

I can pass gas fine laying on my back, with some finagling. The problem is that the gas causes cramps no matter what AND I have to pass it all day long, every few minutes, or I suffer more debilitating cramps, which is uncomfortable. I hate that nothing has worked for you, but I'll be honest--I don't think the pouch is worth it if all I can eat is...(meat?) and I'm going to have constant cramps. And this is coming from someone who HATED the bag. Also, the fact that I have horrible urgency and feel terrible...might as well have a UC flare. 

It's all about your mindset at this point, you already had the operation. Everything has its ups and downs. You are going to have gas. Definitely re-read all of the advice given above and take it seriously. We have all lived through this and are here to help, but you have to be willing to listen. Theres a ranting section if thats what you are here for and some make good use of it. I choose not to complain, my ostomy & j pouch have saved my life. 

Oh Lizadair. I remember that anger too well. Questioning why I had this damn surgery as I felt just as bad if not worse after it. I think youre only about two months out from surgery. Have hope it will improve. Trust it will. I would think if you can rule out pouchitis (try a course of antibiotics?) and if you limit carbs and take probiotics it will settle down. 

And yes, I guess you could "choose not to complain " and just stuff all that anger and frustration down into your gut but it would just likely ferment into more gas (sorry Pouchbro).

And another aside- there is an upside to having an r-v fistula. Gas escapes through the vagina whenever it wants to. No control whatsoever!

Pouchbro,

I'm not trying to rant....I am sorry if I'm coming across as hostile. I just don't know if it is good advice to just "deal" with it and accept it as part of my life. I want to have a good life. We all do! That's why we all had the surgery....

But leaking poo and yellow stomach bile (as I did this morning b/c I didn't eat any solid food yesterday) isn't an acceptable way of living, to me. Neither is having gas cramps all day long, no matter what I eat. I also don't think it is normal to have urgency and muscle aches after eating plain tomato soup w/ bread and bone marrow broth with pieces of beef in it, cheese and crackers. None of these things should cause me the pain I'm feeling. I also didn't feel this bad in the first two to three weeks, so is it normal to get worse? I thought the symptoms/control were supposed to get better over time. 

I'm sorry, really, but I am listening to everyone's suggestions. I'll try Gas x, Beano, and Digestive Enzymes. I have all of them now. I'll just try one each for a few days when I start eating again. I'm a bit confused by the diet recommendations b/c I don't know what I am supposed to eat to bulk the stool up, if not carbs and starches? What do ya'll use in place of those things to bulk up? I'm just real weary of diet modifications. Doctors don't seem to recommend it, and I am a poor grad student, so it is hard to completely do away with easy to make/eat food groups.

And after not eating any solid food yesterday, I feel so much better. Really. Aside from the leaking, I feel good right now. I tried cheese and crackers for breakfast and that seems to be digesting fine. Nice and easy. And I had a milkshake yesterday, which did cause a little gas, but it was a manageable amount. Very little cramping. So I don't think I have a problem with dairy. I know I have a problem with veggies, so I'm not going to try those. 

I'm going to try adding things back to my diet, one at a time, to find the culprits of the gas pains. I'll then cut out whatever foods cause it. So, I guess I should try carbs next and see how they do. When I had UC I could eat anything...because everything made me sick, lol, so it didn't matter what I ate so much. But I did learn that small amounts of food were easier for me to digest. So maybe it isn't the food making me cramp, but the amounts I'm eating?

JHendrix,

Thank you! Yes, I'm angry. I do hope it gets better and I'm able to feel as grateful for my pouch as everyone else seems to be...I'll be 25 in a few months. So I'm young, and I'm missing out on a lot of my life because of all these surgeries and mishaps. It doesn't feel like it gave me my life back because I had more of a life when I had UC... in fact, the last four months before my colectomy, I had 0 symptoms. I had had C-Diff real bad, been in the hospital, then got out and felt wonderful. Suddenly, after 4 months that I thought was remission, I started having bad symptoms, worse than any flare I'd ever had. I was hospitalized, in a lot of pain, and doped on Ativan b/c they were afraid to give me pain meds, in case of Toxic Megacolon. Steroids weren't working, so I was told that I had to have surgery and I agreed to it, but I barely remember doing so b/c I was so out of it. When they took it out, they told me that it was terrible. That there's nothing I could have done to stop it and that it seemed impossible I lived w/o symptoms for months. They did tell me that my colon showed early signs of TMC, so it was a life saving surgery. But right now I don't feel like I'm living a real life. 

Okay, sorry, I know I shouldn't rant here. I'm glad there's an upside to the fistula! 

I did see my surgeon yesterday and he was very helpful. I was given more Lomotil and a prescription for Flagyl in case it is pouchitis. I'm also going to have a scope on Friday to check things out and make sure there's no structural issues and to check for inflammation in the pouch. 

Hi Liz,

I had the same symptoms as you a few weeks after my takedown (Nov 2018).  I had so much pain and gas.  Finally my GI gave me Cipro and within 24 hours I felt so much better.  I continued on that for 2 weeks and after taking me off all the symptoms came back.  To make a long story short, I was on and off Cipro until they decided I have chronic pouchitis and now I don't go off antibiotics.  I take Cipro (500mg) in the morning and Flagyl (500mg) in the evening.  With these meds, I finally feel normal.  I've tried to reduce the amount I take and within a few days my symptoms return.  So I've come to terms with always being on meds but it's so worth it.  I hope you find relief soon.

Liz, I just really want to give you a hug. If you want to rant here, then do it. It's okay. That's what we are here for. Did you find out if you have a fistula? I'm glad your surgeon is doing a scope on Friday. Then you will at least know if you have inflammation, a fistula, or just a couple of crappy months to get through until your small intestine learns it's new job. Please let us know what you find out. Good luck, hopefully you will get some answers.

Aimee

I have been doing extensive research every day for 1.5 years on how to stop the gas pains, reduce gas, and general IBD information. The doctors can’t figure out what’s causing my gas and neither can I. You can rant all you want but you have to listen. Like I said read my posts, I’ve been through it. I specifically said that Beano contains Sorbitol which causes gas in anyone, let alone us j pouchers. I’m fact you should check all of the foods you eat and meds you take for sorbitol or any sugar alcohols (they usually end with “ol” such as mannitol) I’m around 25 also and your right having bile leakage and excessive gas (again I live with these same symptoms 1.5 years after takedown) is no way to live but remember you chose to have this surgery, it is normal after takedown. Give it some time. 

Also, milkshakes? That’s just not a good idea. That milkshake you drank probably contains 50+ grams of sugar and a milkshake gives most people gas even with a colon. If you want dramatic results you have to make dramatic changes. People tend to get offended by my comments, I just keeping it real and that’s the best way to address issues. I won’t sugar coat anything, it won’t get better if you don’t make “smart” changes. A milkshake would bloat me up so much that I would be in the bathroom passing gas for 3-4 days straight. However all of our bodies are different, for most of us dairy is a big no no. 

Also I’m currently hospitalized with a severe flare and gas so if you have any questions pm me. I have some solutions for gas however the community Clearly isn’t too fond of me and my firmness. I don’t take it personal <3 it’s all love on this side. 

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. 

Well, I'm not cutting anything out yet. Just testing what I can eat. As soon as it causes a problem, it's out. I just want to be sure before I cut things. I don't eat Ketchup either...though I do like tomato-based sauces with pasta and whatnot. If that has to go, I will be sad for it. 

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!

I'm really sorry to hear you are still suffering. I was hoping the silence was a sign that things had resolved. Scott is likely correct in that at least you know what to focus on in terms of treatment. Your fecal transplant idea, Scott, sounds like a good one. Good luck Lizadair. Keep us informed. 

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. 

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