If you delay going to the bathroom do you have an accident or just increased paranoia? The most common advice is to gently and gradually “stretch the pouch” by delaying bathroom trips a bit longer each time. This isn’t risk-free, of course, but neither is spending much of your day in the bathroom.

I suggest a more methodical assessment of psyllium. No everyone finds it useful, but it will be impossible to figure out unless you try it consistently for a while, and then (if you are so inclined) try without it for a while. You can also tinker with the dose.

You may need more loperamide - two at bedtime is what my doctor prescribed. And otherwise take one shortly before you eat each meal. That may really help  

I am just over two years from takedown. After 40 years of UC.  Smaller, more frequent meals, and eating lighter towards the end of the day helped me to get more sleep.   I also found having  just a little something before bed was helpful - something fatty, like peanut butter (Scott's choice)  or cheese.

I was advised to eat a high protein low sugars diet, and I have experimented with the fodmap diet to figure out which sugars are hardest for me to digest. I avoided insoluble fiber, seeking   out fruits and vegetables and other foods  with more soluble fiber (the stuff psyllium husk is made of).  Oatmeal is still my best regulator.

I was also advised to avoid artificial sweeteners, carbonated beverages and alcohol.  And to avoid gulping fluids too quickly and skip drinking with meals which can speed up output. Instead, I still drink between meals -- sip sip sip all day  

Frequency will improve as your pouch adjusts to its new function - both stretching as Scott says,  but also (my educated guess) as it learns new pathways to tell your brain that it's time to empty. You'll learn to read that new language.  But it takes time  

If you are worried about leaking, because early on we don't read the signals well, wearing a good quality pad that will pull moisture away from skin and control odor can spare you some anxiety.  I have tried many and found, as others on this site have recommended, that Proctor & Gamble's Always Brand Long  liners -green package / no "wings" are the best.   The packaging is unfortunate, as it involves motivational messaging for young women.  But it's such a good product I forgive them.   It's definitely an easier habit for women to adopt given our experience with menstruation. But they work really too damn well for guys not to take advantage of them if needed. One of these days I will write to P&G and ask them to develop " J-Pads" just for us

And I firmly believe that it should be standard of care that we all be discharged from takedown surgery with a prescription for a bidet. If you don't have one already, don't hesitate.

Hi, been there.

Now, 5 months after take down I found my rhythm in 5 loperamide, 3 sachets of psyllium fiber before meals and mostly 10.000 steps daily.

went from 15-20 to round 8 very controlled moments. It takes time and consistently doing your rhythm.

It’s a rough ride int beginning, I kinda panicked since I was expecting it. I am pretty chill now it came down to manageable and still is improving 5 months into it.

stay strong

Hi,

I see you have received excellent advice here.  I am two plus years in, and finally down to 6 BMs per day.

once you figure it all out, what to eat, when to eat and how much to eat, life will become a lot easier and predicable.

I take Imodium before breakfast and dinner and at bedtime.

Once I figured it all out and stick to my routine my pouch functions pretty well.

@Scott F posted:

If you delay going to the bathroom do you have an accident or just increased paranoia? The most common advice is to gently and gradually “stretch the pouch” by delaying bathroom trips a bit longer each time. This isn’t risk-free, of course, but neither is spending much of your day in the bathroom.

I suggest a more methodical assessment of psyllium. No everyone finds it useful, but it will be impossible to figure out unless you try it consistently for a while, and then (if you are so inclined) try without it for a while. You can also tinker with the dose.

Hi Scott, thanks so much for the reply!

I think just delaying going to the bathroom is an increase in paranoia and slight 'uncomfortableness'. I have never had an accident thus far.

Many thanks again

@AMB posted:

You may need more loperamide - two at bedtime is what my doctor prescribed. And otherwise take one shortly before you eat each meal. That may really help  

I am just over two years from takedown. After 40 years of UC.  Smaller, more frequent meals, and eating lighter towards the end of the day helped me to get more sleep.   I also found having  just a little something before bed was helpful - something fatty, like peanut butter (Scott's choice)  or cheese.

I was advised to eat a high protein low sugars diet, and I have experimented with the fodmap diet to figure out which sugars are hardest for me to digest. I avoided insoluble fiber, seeking   out fruits and vegetables and other foods  with more soluble fiber (the stuff psyllium husk is made of).  Oatmeal is still my best regulator.

I was also advised to avoid artificial sweeteners, carbonated beverages and alcohol.  And to avoid gulping fluids too quickly and skip drinking with meals which can speed up output. Instead, I still drink between meals -- sip sip sip all day  

Frequency will improve as your pouch adjusts to its new function - both stretching as Scott says,  but also (my educated guess) as it learns new pathways to tell your brain that it's time to empty. You'll learn to read that new language.  But it takes time  

If you are worried about leaking, because early on we don't read the signals well, wearing a good quality pad that will pull moisture away from skin and control odor can spare you some anxiety.  I have tried many and found, as others on this site have recommended, that Proctor & Gamble's Always Brand Long  liners -green package / no "wings" are the best.   The packaging is unfortunate, as it involves motivational messaging for young women.  But it's such a good product I forgive them.   It's definitely an easier habit for women to adopt given our experience with menstruation. But they work really too damn well for guys not to take advantage of them if needed. One of these days I will write to P&G and ask them to develop " J-Pads" just for us

And I firmly believe that it should be standard of care that we all be discharged from takedown surgery with a prescription for a bidet. If you don't have one already, don't hesitate.

Hey, thanks so much for replying!

I used to always try and keep to a low carb/sugar diet when I had the bag and found this really helped with my output with that. I think that will be the next thing I try with the J-Pouch, as I have slacked quite a lot since takedown surgey in regards to diet. I will also try two loperamide before bed and see how that goes.

Thanks again!

@JanWillem posted:

Hi, been there.

Now, 5 months after take down I found my rhythm in 5 loperamide, 3 sachets of psyllium fiber before meals and mostly 10.000 steps daily.

went from 15-20 to round 8 very controlled moments. It takes time and consistently doing your rhythm.

It’s a rough ride int beginning, I kinda panicked since I was expecting it. I am pretty chill now it came down to manageable and still is improving 5 months into it.

stay strong

Hi, thanks so much for replying.

That's filled me with optimism! Maybe I will up the loperamide a little and also the steps thing is something I will have to improve on, as 10k steps pre-surgery was pretty much a daily thing for me.

thanks so much again!

@New577 posted:

Hi,

I see you have received excellent advice here.  I am two plus years in, and finally down to 6 BMs per day.

once you figure it all out, what to eat, when to eat and how much to eat, life will become a lot easier and predicable.

I take Imodium before breakfast and dinner and at bedtime.

Once I figured it all out and stick to my routine my pouch functions pretty well.

Hi, thanks for the reply.

I'm filled with optimism already from this post - I know it may be a long road but I'm sure I'll get there. As you said - I guess its all just 'figuring it out'

Thanks again!