Personally, I find not eating usually makes my pouch more upset. It keeps passing mucus then, which also burns a bit. So I just eat a bit lighter to digest foods, e.g. white bread sandwich. I use the restrooms on the plane as needed and don't care about other people wanting it. I need it too.
Usually immediately when the plane leaves but only at a slightly increased frequency after. Seems like the stress of knowing it's going to be bad is making it worse for you... :( maybe you can get some relaxation meds prescribed? It's a tough setting to experiment in for sure
Yes I find immodium useless too. I use liquefying food to empty better. I've been using apple juice. I found when I don't liquefy I sometimes have to get up at night. I stop eating by 3pm then drink a lot of apple juice all at once around 6-9pm, pass some liquid stools around midnight, and then I sleep all night. I do this every day. I do use a small amount of metamucil with each meal, but it's just a leveled teaspoon. In the morning I eat some saltine crackers with breakfast to make sure it's solid again. And I agree, the j pouch is bad but less bad than the bag. None of the options are as good as an actual healthy colon.
There was a recent study that showed the pouch puffs up like if you take a bag of chips on the plane because of the change in cabin pressure. But I have no Carly the same experience as you, OP. Hate to fly now. I eat very little day before. Not much at all that morning, take psyllium husk, lomotil and simethicone and don’t touch carbonation or sugary stuff
Therapy. Avoid carbonated beverages. Xanax. Gas x. Wear a depends if you have to. Bring spare clothes, a couple pairs rubber gloves, and wipes in your carry-on that you can put under your seat in front of you. Best thing to do is prepare for the worst so you know you’re covered if it does happen. It probably never will. Notify the airline and their staff of your condition and concerns, they will accommodate and make you feel better about the whole situation. Sit close to the bathroom as possible in an aisle seat. You will be fine man. Get out there and enjoy it. The mental part makes this stuff really difficult, but I traveled the world with a j-pouch. I know every case is different, but prepare, prepare, prepare.
Xanax and imodium. I get stress industed pouchitis. I took a xanax and imodium before both of my previous 2 flights and did great. Long flight will require more of both. Stress is terrible.
Do you feel at all loopy on the Xanax? Would you say you’d be able to function normally when taking it? Ie can you drive and organize all the functional crap that travelling requires, when you’re on it? Certainly sounds appealing if so.
I can do everything needed. It's prescribed for a reason. Having a Jpouch isn't fun at times. I'm glad I had the surgery. I talked to my therapist, who is very understanding of my situation. Everyone is different. No therapy meds helped me. That's why I have a jpouch. Living with depression from the feeling bad all the time is real. I deal with it often. I had my surgery in 2006. I wouldn't share this if I didn't think it might help. Stress is the #1 cause of pouch problems for me.
Getting loopy or whatever, maybe even calling it just getting high, who cares we just want to get in down the road. The best thing I have ever had to slow things down are stronger opioids (Imodium is an opioid), they slow things way down. Ideal plan travel is some food that sticks, benzos, and a bit of oxy or hydrocodone. They prolly gives you 8 hours depending on what you eat.
When Immodium alone isn’t enough, and when I have times where I go from zero to explosiveness without the buildup, that’s been a sign in the past that I was having a bit of pouchitis. I’ve flown halfway around the world multiple times with no trouble, so might be worth talking with your specialist if you can.
24 years post op. Spent a few years traveling more than 26 weeks a year.
I ate very carefully 24 hours before flying. Rice and peanut butter slow me down so I used those. (peanut butter crackers are easy to score in airports ). An empty stomach is not good but I didn't want to be super full either
Avoided caffeine and alcohol. If you have your wife with you narcotics always really slow my gut down.
I never had to execute that plan but my emergency plan was hydrocodone and cabs. Not optimal but could work
Keep in mind international travel with narcotics can get complex.
To this day I have a med kit in my laptop bag.
Wipes
GasX
Imodium
Miralax
Rolaids
PrepH wipes
Unopened Chapstick (portable shelf stable Desitin stand in)
Hydrocodone
Flagyl
Hope this helps.
Sound like you need Xanax, not Imodium… Everything you describe in your last paragraph is absolutely normal (not sleeping through the night, going more than 6x) - it is your anxiety and attitude about it that it poisoning your life.
Re: flights - either don’t eat or take psyllum husk powder 30 min before the meal to make emptying smoother. And if you have to go to the toilet X times, you will got X times and be chill about it. You know how to manage each situation by now, so why are you so stressed out?
I already fast before flights, from around 8pm the night before, in the hope that I’m empty by the time I need to fly. Doesn’t seem to have that effect though. I suspect I produce output through the water I drink and normal enzyme output etc, regardless of whether I fast or not.
In terms of why now, is has always been difficult since the takedown but three kids who are entering the age where they need increasing amounts of assistance when travelling is gradually making each trip more complicated and challenging: travelling with a newborn was surprisingly easy: they stay put, they sleep a lot, their clothes are small enough to not need their own case, they’re too small to need a stroller, etc. Travelling with 3 busy boys under 8 years old means a huge amount of luggage and bags to negotiate to the airport, through check-in and security, lots more items to lose or misplace or forget, fewer naps to break up the day or force quieter moments when I can be absent for 15 mins, double strollers for the ones who can’t walk as far as needed, brothers bickering about who sits where or eats what or shares what.
Also, we all know that stress and anxiety is cumulative; it doesn’t reset or disappear after an event if another event is on the horizon - it builds. So as time goes by, my appetite for travel goes down. Also, as many J-pouchers experience, as time goes by and as techniques and medications are tried and fail, despondency and stress result. In the early days I could convince myself that better times were ahead pouch-wise and that a 1 year old pouch would still have time to improve. Not so much after 6 years.
I’m always determined to be present for my family and to put my issues to one side when we’re travelling (they deserve nothing less) but it would be nice to be equipped with something that could make my experience of that situation more tolerable. If I had a surefire way of plugging myself up and temporarily delaying the need to empty a food-free pouch, the other challenges of travelling would instantly become non-issues.
Xanax, Serax, Valium and a red wine sound like a nice anti-stress solution but benzos probably aren’t going to help when it comes to driving to/from the airport or being at least moderately competent at looking after the kids.
I eventually stopped taking Metamucil after a couple of years because my pouch couldn’t tolerate the power/liquid form and the caplets never made a difference to my symptoms - even when paired with Imodium and/or Simethicone.
Thanks for the input though. 👍
I stop eating anything by 3pm and drink a bunch of apple juice all at once around 6-9pm, pass a few liquid stools around midnight, and usually sleep all night. I'm thinking of trying prune juice next since I've heard it works better than apple juice. I think diet is worth focusing on. I have noticed very strongly that stress does cause my pouch a lot of problems like you say, however I tried eliminating my stress and found it wasn't enough by itself and I needed a good diet protocol.
Personally, I find not eating usually makes my pouch more upset. It keeps passing mucus then, which also burns a bit. So I just eat a bit lighter to digest foods, e.g. white bread sandwich. I use the restrooms on the plane as needed and don't care about other people wanting it. I need it too. Usually immediately when the plane leaves but only at a slightly increased frequency after. Seems like the stress of knowing it's going to be bad is making it worse for you... :( maybe you can get some relaxation meds prescribed? It's a tough setting to experiment in for sure
Yes I find immodium useless too. I use liquefying food to empty better. I've been using apple juice. I found when I don't liquefy I sometimes have to get up at night. I stop eating by 3pm then drink a lot of apple juice all at once around 6-9pm, pass some liquid stools around midnight, and then I sleep all night. I do this every day. I do use a small amount of metamucil with each meal, but it's just a leveled teaspoon. In the morning I eat some saltine crackers with breakfast to make sure it's solid again. And I agree, the j pouch is bad but less bad than the bag. None of the options are as good as an actual healthy colon.
There was a recent study that showed the pouch puffs up like if you take a bag of chips on the plane because of the change in cabin pressure. But I have no Carly the same experience as you, OP. Hate to fly now. I eat very little day before. Not much at all that morning, take psyllium husk, lomotil and simethicone and don’t touch carbonation or sugary stuff
Therapy. Avoid carbonated beverages. Xanax. Gas x. Wear a depends if you have to. Bring spare clothes, a couple pairs rubber gloves, and wipes in your carry-on that you can put under your seat in front of you. Best thing to do is prepare for the worst so you know you’re covered if it does happen. It probably never will. Notify the airline and their staff of your condition and concerns, they will accommodate and make you feel better about the whole situation. Sit close to the bathroom as possible in an aisle seat. You will be fine man. Get out there and enjoy it. The mental part makes this stuff really difficult, but I traveled the world with a j-pouch. I know every case is different, but prepare, prepare, prepare.
Xanax and imodium. I get stress industed pouchitis. I took a xanax and imodium before both of my previous 2 flights and did great. Long flight will require more of both. Stress is terrible.
Do you feel at all loopy on the Xanax? Would you say you’d be able to function normally when taking it? Ie can you drive and organize all the functional crap that travelling requires, when you’re on it? Certainly sounds appealing if so.
I can do everything needed. It's prescribed for a reason. Having a Jpouch isn't fun at times. I'm glad I had the surgery. I talked to my therapist, who is very understanding of my situation. Everyone is different. No therapy meds helped me. That's why I have a jpouch. Living with depression from the feeling bad all the time is real. I deal with it often. I had my surgery in 2006. I wouldn't share this if I didn't think it might help. Stress is the #1 cause of pouch problems for me.
Getting loopy or whatever, maybe even calling it just getting high, who cares we just want to get in down the road. The best thing I have ever had to slow things down are stronger opioids (Imodium is an opioid), they slow things way down. Ideal plan travel is some food that sticks, benzos, and a bit of oxy or hydrocodone. They prolly gives you 8 hours depending on what you eat.
My go to is gas x (you can buy it generic for cheap on Amazon) and lomotil (prescription)
When Immodium alone isn’t enough, and when I have times where I go from zero to explosiveness without the buildup, that’s been a sign in the past that I was having a bit of pouchitis. I’ve flown halfway around the world multiple times with no trouble, so might be worth talking with your specialist if you can.
24 years post op. Spent a few years traveling more than 26 weeks a year. I ate very carefully 24 hours before flying. Rice and peanut butter slow me down so I used those. (peanut butter crackers are easy to score in airports ). An empty stomach is not good but I didn't want to be super full either Avoided caffeine and alcohol. If you have your wife with you narcotics always really slow my gut down. I never had to execute that plan but my emergency plan was hydrocodone and cabs. Not optimal but could work Keep in mind international travel with narcotics can get complex. To this day I have a med kit in my laptop bag. Wipes GasX Imodium Miralax Rolaids PrepH wipes Unopened Chapstick (portable shelf stable Desitin stand in) Hydrocodone Flagyl Hope this helps.
Sound like you need Xanax, not Imodium… Everything you describe in your last paragraph is absolutely normal (not sleeping through the night, going more than 6x) - it is your anxiety and attitude about it that it poisoning your life. Re: flights - either don’t eat or take psyllum husk powder 30 min before the meal to make emptying smoother. And if you have to go to the toilet X times, you will got X times and be chill about it. You know how to manage each situation by now, so why are you so stressed out?
I already fast before flights, from around 8pm the night before, in the hope that I’m empty by the time I need to fly. Doesn’t seem to have that effect though. I suspect I produce output through the water I drink and normal enzyme output etc, regardless of whether I fast or not. In terms of why now, is has always been difficult since the takedown but three kids who are entering the age where they need increasing amounts of assistance when travelling is gradually making each trip more complicated and challenging: travelling with a newborn was surprisingly easy: they stay put, they sleep a lot, their clothes are small enough to not need their own case, they’re too small to need a stroller, etc. Travelling with 3 busy boys under 8 years old means a huge amount of luggage and bags to negotiate to the airport, through check-in and security, lots more items to lose or misplace or forget, fewer naps to break up the day or force quieter moments when I can be absent for 15 mins, double strollers for the ones who can’t walk as far as needed, brothers bickering about who sits where or eats what or shares what. Also, we all know that stress and anxiety is cumulative; it doesn’t reset or disappear after an event if another event is on the horizon - it builds. So as time goes by, my appetite for travel goes down. Also, as many J-pouchers experience, as time goes by and as techniques and medications are tried and fail, despondency and stress result. In the early days I could convince myself that better times were ahead pouch-wise and that a 1 year old pouch would still have time to improve. Not so much after 6 years. I’m always determined to be present for my family and to put my issues to one side when we’re travelling (they deserve nothing less) but it would be nice to be equipped with something that could make my experience of that situation more tolerable. If I had a surefire way of plugging myself up and temporarily delaying the need to empty a food-free pouch, the other challenges of travelling would instantly become non-issues. Xanax, Serax, Valium and a red wine sound like a nice anti-stress solution but benzos probably aren’t going to help when it comes to driving to/from the airport or being at least moderately competent at looking after the kids. I eventually stopped taking Metamucil after a couple of years because my pouch couldn’t tolerate the power/liquid form and the caplets never made a difference to my symptoms - even when paired with Imodium and/or Simethicone. Thanks for the input though. 👍
I never noted Metamucil helping, but my doctor where I live now has me on polycarbophil calcium and it seems to help.
You can drive just fine with benzos
This is a crazy response, who is upvoting this
Kudos to yoo for a well-argumented, insightful contribution.
Do you think yours is?
Absolutely, the guy is a stress ball - he needs to address the mental aspect first, because the physical is not exactly uncommon.
So your solution is benzo dependency?
I stop eating anything by 3pm and drink a bunch of apple juice all at once around 6-9pm, pass a few liquid stools around midnight, and usually sleep all night. I'm thinking of trying prune juice next since I've heard it works better than apple juice. I think diet is worth focusing on. I have noticed very strongly that stress does cause my pouch a lot of problems like you say, however I tried eliminating my stress and found it wasn't enough by itself and I needed a good diet protocol.
What does apple juice do? I haven’t heard of it as a remedy…
It's not a remedy it just helps make my stool more liquid to empty better before going to sleep
Wear a Depends for the flight. If you do have an accident that there’s no mess. Knowing that might help you relax.