On the J-Pouch waiting list... Couple of questions.

Hi Nick,

Congratulations are your upcoming takedown. You are going to get multiple opinions here but speaking for myself,

yes I get the urge to go, just like the old days.

my food transit time dictates when BMs will happen.  When my pouch begins to fill up, I get the urge to go. Some folks here can hold it for an hour, me not so much. When I get the urge I just go. Some folks here can sit and empty prior to leaving the house if they want to. Not me.

I take Imodium 3 times per day to slow my transit times, but nonetheless, much like the appliance, when the pouch fills up, I want it emptied.

good luck!

Thanks very much for the reply. It makes me more confident I've made (possibly) the right choice!!

Hi, Nick. I have more latitude than @New577 describes, but the general spirit will apply to many J-pouchers. I definitely use the toilet before going out for a while, sometimes just because I prefer my home bidet to the toilet paper and questionable cleanliness in public toilets. Nevertheless, I can usually put off bathroom trips for quite a while if necessary. I’ll finish the movie (or whatever), and generally just wait until I get home, unless I’m out all day.

A typical successful J-poucher poops 4-6 times per day, more often if things aren’t quite right. At 6 times daily you’re averaging a toilet trip every four hours, and more often if you’re sleeping through the night. You won’t get surprised by urgency if things are working properly, but an overly full pouch is uncomfortable.

I once went on an all-day bicycle tour in Thailand. I was put off by the squat toilet at the mid-day stop, and I skipped it. By the end of the day on the train back to Bangkok I was in real pain, but I was also pleased with myself. I’m not sure what I did was wise, but I enjoyed the feeling of control and confidence.

I hope your surgery goes very smoothly!

Thanks Scott. Great info, much appreciated.

The other question I had, which normally would be too embarassing to ask even on the internet, but I think I'm in understanding company here... how is the night-time?

I can guess there's night-time trips, there is with my stoma pouch anyway, but would your body tell you to get up and go? Hope you see where I'm coming from.

Nick.

You have to keep in mind transit time with a J Pouch is around 3.5 hours and your motility will possibly be sped up right after surgery before slowing down. Anywhere from 4-8 bowel movements could end up being your norm but your continence should be fairly good.

Generally BMs do happen at night and you may end up getting up at night to go. You should wake up, do your BM and then go back to sleep. I have sleep issues apart from the J Pouch and take marijuana sleep gummies for sleep which seem to slow down motility and I go less at night since taking them. Imodium like effect. Imodium will also control motility at night.

The initial post-surgery period can be challenging. I generally sleep for about 6.5-7 hours uninterrupted, but people all have different, unique sleep patterns. Unless I have active, untreated pouchitis I don’t have a nighttime accident - and I am occasionally awoken by a need to use the toilet.

I definitely think you are making the right choice.  Although I got used to and found the appliance very predictable, thirteen weeks for me was more than enough to be rid of it.  While I am not in love with the pouch,  I do not have the mental toughness needed to have an oestomy for years and I accept the pouch for what it is (the ability to have as near normal bodily function as possible)

It will take time to adjust but you will figure it  out. You will learn the foods, medicines and times you can eat.  It’s a learning process and while I have it mostly under control there are still daily challenges.

I try to keep a rigid lane based lifestyle.  Generally when I stay inside the lane, things go well and when I stray outside said lane, not so well.

i eat breakfast/lunch and dinner and no food intake past 6 pm. This plus Imodium/gasx at mealtime and bedtime allows me to have 6 BM’s per day and mostly sleep thru the night.

New577 reminds me that I do take Lomotil at bedtime, though I’ve noticed that if I forget to take it I seem to sleep almost as long.

@New577 posted:

I try to keep a rigid lane based lifestyle.  Generally when I stay inside the lane, things go well and when I stray outside said lane, not so well.

This is well said.  The tricky part in getting a new J Pouch is figuring out what constitutes staying in your lane.  It's trial and error, and I recall getting advice to keep a dietary journal, which is pretty good advice.  And also noting what works and what does not work as far as medications and supplements.  Many new J Pouch patients come to this board thinking there is a "common J Pouch experience", but even on the J Pouch highway, we have many different lanes and you need to figure out which one is the safest travel lane for you.  That is not determined by the experience of others, but by your very own experience, gleaned through trial and error.  But you have to record the trials and know the errors, so that you avoid repeating them and learn how to drive safely in your own lane.

Great question and welcome to your probable new future as a “poucher”.  Like the others have said, there’s various experiences but I have always had very good results from my 30+ year old pouch.  I have full BM control whether awake or asleep.  I poop 4-6 times a day like many, but can hold it for hours if needed.  Like with holding regular non-pouch BMs, it gets uncomfortable after a while but you can do it.  Probably not as long though, if I feel like I need to go (and you will get the “signals” like normal) I can hold things for a couple of hours but not much more than that without being really uncomfortable.

Night is no problem, I’ve never had an accident except once when I had giardia.  And bonus, you’ll never be constipated again!  😀.

For me it took an number of years and finding a good gastroenterologist to settle into a normal life with my pouch.  I ended up in the hospital a few months after my surgery, from dehydration.  That was the surprising part to me, that my surgeon didn’t really say much about.  You will dehydrate easily, and it can get bad enough to send you to the ER.  I couldn’t stand up.  It’s easy enough to manage with plenty of water and occasional sports drinks or supplement mixes (I like Liquid IV).

The other common issues I’ve had, and seen on this forum, are pouchitis and blockages.   Pouchitis can be a pain, and there’s various management meds to handle it.  There’s a good chance of you being on antibiotics periodically  or a maintenance biologic like Humira if antibiotics don’t work.  Often the surgery and inflammation also cause strictures, which can result in blockages in your intestine especially if you eat a bulk of fibrous food.  And those truly suck- not everyone has this issue but when it happens its excruciating pain.  I get them a few times a year and generally am able to manage with Percocet at home, but I end up hospitalized probably every 2-3 years when it gets too bad or I need them to clear it out.  If you do need hospitalization, I’ve finally gotten wise enough to refuse nasogastric tubes (horrible) and insist on a balloon scope procedure which can dilate the stricture and relieve the blockage.

Last note- make sure you get a good gastroenterologist to work with before and after your surgery.  Your surgeon cannot/will not be your ongoing maintenance doc.  You need someone in your corner helping you through issues that arise.

Good luck with everything and ask more questions if you need to!  This is basically a forum about pooping so no question is too gross 😀👍