Managing gas with a J-pouch

[gutless]

I was diagnosed with ulcerative colitis in 1999 when I was 18, since then I have tried various treatments but had very little response to any of them, I was in hospital 2-3 times a year due to this and lived in constant pain and discomfort. The only drug that had any long term affect was prednisone but after being on an average dose of 40mg a day for many years it stated having other ill effects.
In 2008 I had my entire large intestine removed and had a J-Pouch created, since then my life has improved greatly, I don’t have constant pain, blood and mucus anymore, but still need to go to the toilet regularly. Before the opp I would have to go to the toilet up to 50 times a day, but now it’s generally between 15-30, depending on what I eat and how much gastrostop and panadeine I take. The main problem I have now is gas, I have changed my diet to help reduce gas but still get a lot of build up, this is a big problem as now I cannot pass gas without going to the toilet.
This problem affects me mostly in the evening and during the night; I can’t remember the last time I had a good night sleep without dosing myself with painkillers and alcohol just to get a decent rest. Right now it is 3:23am and I have had about half an hour of sleep tonight as I keep having to get up to pass gas/poop.
I don’t eat after 6pm, cook everything fully, don’t eat green or leaf vegies, don’t have spice, garlic, onions, capsicum, milk, fruit, caffeine, greasy foods, eat low gluten,  low sugar. I take 3-4 charcoal tabs a day to help, but still I can’t control it.

At this point in time I’m working and most of my pay goes to managing my condition and paying of the substantial debt that I have from the times I haven’t been able to hold a job. As it is I won’t be able to hold this job long due to lack of sleep and the need to go to the toilet regularly (it’s a 55min travel to work on the train...for those who understand)
Any one that has a idea please let me know, I’ve tried various doctors, nutritionists, naturopaths, Chinese medicine etc. still I’m coming up zero

[smokeyspins]

Wonder how you are doing, 11 years later?  Your story hit very close to home.  I hope you are well.

[TP75]

I had my surgery in 1994 when I was 19. I'm 39 now and my surgery was a succes. I'm from Australia and it was a new surgery at the time. There are things I need to do daily like make sure there are toilets near by and unfortunately it's something I even have to ask about when starting a new job. I'm lucky I work in a hospital so there are a lot of toilets but there are a couple that I have found are isolated ie the noise is less likely to be heard and there is adequate ventilation for the smell. I have learned that if I have finished eating by 6pm I don't have to get up over night and I sleep well. I have also learned its a skill to get rid of gas and laying on my left side is the only way for me that doesn't involve a toilet however it is not always successful. I tend to have blood in my stool if I hold on too long as I think the gases stretch my pouch. I do wonder what it will be like when I become elderly and how it will hold up but given it seems most of us are 'firsts' in our country we will only know when 'we' become elderly. No matter what the j-pouch is way better than my UC that I had from age 11-19.

[Cogsgirl]

I had my Surgery in 1984 at lahey clinic in Boston.  It was expermential back Then.  Mine was a huge success.  It is 30 yrs old.

[Brammon]

I had the operation 15 years ago and have gone through a lot since. I have tried a variety of ways to manage the gas/going-to-the-bathroom-all-the-time issue. First...go see your doctor and see if you need to have your pouch "stretched". Over time it will shrink, and we already are tight for space. If your pouch is too small then you can't store as much and therefore you will go to the bathroom more. Also, don't over cook your foods as you loose a lot of nutrients and your lack of sleep, although triggered by the gas, may not be the root problem. Because we don't have a full digestive system we will loose a lot of fluids and nutrients.
Stay away from all gassy foods. Drink water through out the day. I find first thing in the morning, before meals and about 30 minutes to an hour after a meal. Don't drink water too late. Try and eat smaller meals every 4 hours. I find that I get a lot of gas four hours after eating. An empty stomach causes gas! So if you eat at six and not again until morning there is a lot of gas build up.
I eat a low residue diet that is high in protein and fruit. But only certain fruits like grapes, blueberries, strawberries, mangos and bananas as a small example. Gassy fruits like apples and pears should be avoided but you should experiment and research more.
Stay away from white breads and even most whole wheats. Look into rye and pumpernickel. I eat whole wheat pita and tortillas a lot too.
Stay away from nuts....they are delicious but gassy AND hard to pass.
Starchy foods are good like rice and potato's. Baked potatoes and sweet potatoes covered in garlic and onion powder ( powder not salt ) are a favorite of mine.
Stay away from margarine and butter. Use olive oil.
Don't drink to go to sleep either. I love beer and wine and everything else but they will make things worse...so much worse. If you are going to drink drink local beers with less preservatives. You probably have a microbrewery in you area. They usually use good wholesome ingredients. But remember that alcohol is a diuretic... which will dehydrate you which is also bad.
And most importantly...exercise. You have been given a chance to live a considerably better life. Remember that it will be hard...but like is hard so make the best out of it. Stay positive and don't feel bad about yourself...that doesn't help.
It ***** watching your friends eat MacDonald's ( stay away from fast food ) and drink a two four of beer but that's life...your life.
I get up anywhere between four to ten times a night (  ten is when I've been bad and eaten something gassy and drank a two four of beer ) but that's that.
You need to train yourself to be able to fall asleep quickly. Stay calm and relaxed...don't get stressed out or worked up just because you have to rush to the bathroom. Accept it and embrace it. Do exercises to strengthen your sphincter muscle so you can take those long bus rides.
Try getting a mountain bike and bike everywhere. I bike in the snow. I feel great after wards.

I've gone from over weight going to the bathroom all the time alcoholic smoker who eats fast food all the time who almost died but kept smoking and drinking and eating fast food all the time and then ruptured my pouch three times until I figured all this out. I am in the best shape of my life now.
Do I want to be better? Yes. That's how I found this forum. I was looking for information on frequent trips to the bathroom caused by gas. But everyone I talk to and every forum I read says the same thing. And I've discovered that since I've changed my diet and started exercising my life has improved.
All we can do is manage our lives with what we have.
You can only build with what you have.
Good luck.

[sjk1885]

  I had a J-pouch in 2009.  I had intense bowell movements where I thought I couldn't hold it.  I would hold tight and then it would subside.  When I did get to the restroom nothing would happen.  It took a while before I learned that this is gas (fart).  I think that guy probly has bowell controll but the gas is intense.  Like me.  You don't have to go the toilet to pass gas.  Lay on your stomach or your side and you can pass.  When your at work you need a private area to do this such as the bathroom but I'm confident that  all haven't discovered this.  I get 5 good hours of sleep and then it messes with me.  My days off I recouperate  but I'm  way better now than when I had UC (30 times a day).  I go more than I need to but again it's the gas that wants to blow out the wet stoole.  The first two hours of my day it's bothersome but mellows out a lot.  I really hope this helps and that I'm correct.  If we could get rid of gas we'd be fine.

[lifespoo]

I to was diagnosed with UC when i was 18 years old. Lived with it for over 20 years, On sulphazalazine, prednisolne, enima's etc.. and constant pain diahorreah, bleeding etc.. And dehyration. Shakes etc.. and feeling cold. terrible dark time of my life. I then had my J pouch operation. Wow did it turn my life around. Same as you I visited the loo frequently.. Everywhere I went, I planned aroute around the loo's!!! public house's, motorways etc. Now although life is better and no more pain, I still have urgency with the pouch. According to what I eat.  I to was one of the first paitients in the uk to have tis op performed back in 1999 when it had only just began the pionerring stage. Thankfully how lucky we are. Recently after all these years I have been experiencing Bad stomach pain. under my right rib. And in my abdomen, My GP Says its gas. And has prescribed me Omeprazole. I haven't taken these yet, as the side affects look really scary! I'm going to read up on them first on a forum. Read your article, and I'm going to lookk for some charcoal tabs to see if they help me. Also I've been experiencing some pain in my buttock cheeks when sitting. Not sure if this is gas build up.. Thanks.

[jandjhill2000]

Hey Gutless. My name is Jen and I was one of the first patients in the U.S. to have a J-pouch performed on them. My surgeries were performed UNC Chapel Hill -NC. by Dr. Mark Koruda.  I had my surgery in August of 1998. It has been almost 13 years since my surgeries. I still have the problem with gas and going to the bathroom.  It is mainly just trial and error with foods and meds. I have my good days and bad days. I have noticed if I eat cheese I can slow the bowel movements some if I have somewhere to go. I also have been taking immodiums for the entire time. I take up to 4 a day. I recieved information when I was having my check-up appointments about diet. These are the foods I was told would cause gas to be worse and I may have to avoid them. Gas producing foods: Milk, Dried beans and peas, Strong Cheese(Roquefort, Blue), Melons, Asparagus, Onions, Nuts, Beer, Carbonated drinks, Broccoli, Cabbage, and Cauliflower. I think sometimes our nerves get torn up when traveling and we have to change our mind set. Kind of like mind over matter. Medically its called IBS. It comes along with the territory. Good luck and let me know if you have anymore questions I can possibly help with. Glad to be alive.....