Hi all. It seems for the most part most people wake up 2-3 times a night, just like myself, even though you try and "empty out" before bedtime. It seems the pouch has a mind of its own and no matter what you do it wins in the end. But it is quite bearable and if the total hours of sleep is enough to keep you in mental and physical shape for the next day then I can live with it. Things could always be worse!

...Lionel

In a previous survey on Fecal incontinence, there are several good answers from people on how to manage. Much of the incontinence was related to night time problems when sleeping. I also wrote at length on sleeping position and how certain positions help slow things down. Link is below

 

https://www.j-pouch.org/surveys...2#457716058471309402

I find that some foods slow things down for me...like apples, unsweetened apple sauce, some types of fiber like nuts and trail mixes.  I think that sometimes fiber gets a bad rap, because some types of fiber are good at slowing the pouch down because they also absorb water (metamucil).  Obviously some foods with fiber are to be avoided like those that cause gas or irritation...I love strawberries but they irritate my system if I eat them a couple days in a row. I'm curious if other people know of "slow foods" that work for them?

Answering on behalf of my son-13 years old, had surgery 7/10/15, they did all procedures in 1 surgery. When he wakes up 2 times its a good night! 4 or more and he is exhausted during the day. Thanks for all the life experience everyone is sharing. It really helps!!! Getting better , looking forward to better days.

Sometimes. It all depends upon what, how much and how late I eat.

I always wake up once, rarely twice. But the problem is not waking up, it's the not waking up in time! I wear pads and almost always have a mess to deal with. I was taking opium tincture that helped a lot, but then I had a grand mal seizure. The doctors said that it probably contributed to the seizure. I usually take 1/2 of a Xanax to help me fall asleep again.

I usually get up once during the night, sometimes more and sometimes less. I have been told if I eat earlier then I could maybe avoid it, but I'm generally unwilling to let this control my social life and work life, which generally include dinners out with friends and colleagues. Especially after 10 years with UC. I have found an immodium before bed helps. So maybe try that. And I keep the lights off when I wake up to go to the bathroom, so that I don't get woken up by the lights and can just go back to sleep. So you could try that or a nightlight in the bedroom/bathroom for your route. Honestly, it only bothers me when that number becomes more than 2, which is either when I drink or have pouchitis. Good luck!

@Michelle1964, your condition sounds like pretty bad case of pouchitis. I have pouchitis also but it was never as bad as you describe.  Even though it's tolerable I find if I don't take Ciproflaxin regularly I get run down and dehydrated.  I'm at the point where I take a very low dose, only half a pill a day, but I do take it pretty much every day and my doctors have left it to me to use it as needed, they just refill my prescription when I need more.  I'm wondering if you are on any kind of medication...sounds like you should be, to get things settled down?

I feel your pain! I've not "tooted" without being on the throne since my surgery in 1999. I've had the odd accident during the night and I'm very blessed to have such a wonderful, loving husband who has a great sense of humor!

I'm up about 1-2 times a night.

It's through trial & error for the past 20 years. When I'd took a Tylenol PM or Melatonin to help with sleep, I'd sleep longer periods but awake with surprised morning clean-ups which was emotional to address. I have found that after dinner when I take 1 T. Metamucil, 1 Imodium, 1 Simethicone  the GI contents become more formed feel less gas (with noisy night stomach) has recently been achieved with adding a 1 capsule probiotic.Trial & Error.

 I agree with others, you will find those items you'll want to stay away from for a successful night sleep also. I've also recently changed from wine to water with dinner and usually pass on after dinner decaff coffee & deserts. Late night meals and snacks are a thing of the past.

Hope this helps!

 

 

I'm up three sometimes four times a night no so much because my pouch is full but because of painful gas buildup since I haven't learned how to pass it safely! It's been over 10 years so I don't think I will ever be able to let it go anywhere else than the throne!

Original poster here...

 

Thank you for all the great responses. I just noticed there are a few other threads on this topic. However, you guys added quite a bit more information here.

Thank you to everyone for your feedback and suggestions. This survey couldn't have come at a better time.  Now if i can just get him to read the comments and realize he is not alone on this journey!

Jake, this is me to a tee..I am up every few hours then sleep like a baby right before it's time to get up. I have had a J Pouch, 20 years, I have tried everything from not eating prior to bed...it doesn't seem to help...Night is the worst time for me!

my pouch is 4 years old.At the beginning i was very careful to eat early and to eat light  and i  woke up 2.3 times at night; now i wake up only once  and sometime i sleep throught the night.iI go to bed late,around  midnight and that makes easier to digest  and to sleep longer . it seems to me that alchool and cooked cheese could give me some problems at night .

90% of the time I sleep through the nigh, but there are those times when something doesn't sit right and I'm up.

 

One other note: I've had my pouch since 2002.

 

 

On the rare occasion, I have made it through the night in its entirety. On average, I wake up once or twice. Sometimes, it's more often. I think when I wake up often, it usually has to do with something I ate, or how much I ate. I like junk food, so on the days where I splurge I go to the bathroom more frequently; day and night. I used to try not to eat after 6 p.m. I do think that helps. 

 

I should also add, if I eat in the late evening.  I can expect to make a couple of trips to the bathroom throughout the night   Sometimes I can go right on back to sleep.  Sometimes I just can't. 

Yes. This pattern is what I experience too. If your cycle time through the small intestine is 4 - 5 hours then I find if I stop eating 4-5 hours before bed it is much better. I go before bed and 1-2 times at night. If I restrict drinking liquid too then maybe longer sleep without getting up. 

 

 

I also try not to eat too late or too heavy for dinner.  I take (2) immodiums before falling asleep and can usually get a solid (6) hours of sleep.

I answered "yes" on behalf of my son who is up multiple times in the night, usually because he's had an accident or having urgency.  I'm trying to get him to do his kegels to help with the accidents.  He also eats a lot at night which I think needs to change. 

Yeap. I have sleep issues. Had J pouch since 1994 and have always been up at least twice a night, 3 is okay and a bad night 4 to 5. It has become my routine aswell and just accepted it. i have tried immodiums, and helped sometimes, restricting food and drink, have worked sometimes and other times is just my pouch. I get recurrent pouchitis that responds well to antibiotics, so when I am on them I found I have had up to 6 hours straight sleep. But like you have a schedule, 12am, 3am and then 6am is the norm for me. I find restricting gassy foods at night helps alot, and try to eat binding food to slow things up. I'm lucky that my ensuite door is basically next to my bed so I fall into the bathroom then back straight to bed, but camping sucks! I read when I go as sometimes like one of the other pouchies it can be a bit stubborn, and to avoid a trip within half an hour i wait it out a few more minutes, pays off in the long run (pardon the pun). Good luck my friend but it sounds like your pouchy is developing its routine, hopefully you get to control it with diet and meds like some of the other pouchies out there. They can certainly be temperamental. When I had my ilieostomy I was up just the same amount of time otherwise it was just a mess - had to set an alarm, drove my partner nuts, so I am happy to work through the pouch issues too. Good luck.

I can sometimes go through the entire night without getting up.  Mostly I need to get up to let the cat out, and use the bathroom while I am up.

I wake up mostly 1x to go to the bathroom! And that is right now! I find this pretty funny. I usually bring my phone to check email or play a game to relax me because it can take a while to empty.  Rarely do I never have to go.  Only when I've eaten sugar, lots of fiber or something that upsets me is when I'm up more than 2x a night.  Now I shall try to go back to sleep for 3 hours!

It took a long time to get there, but I now do sleep right through. The trick for me was not eating too late, not having too many liquids too late, and making sure the pouch is completely empty just before going to bed. Even then, I wake up with a full pouch in the morning.

I sometimes sleep straight through (about 20%), but usually I will go once a night (about 70%), so multiple toilet visits per night is only about 10%.

This was a HUGE breakthrough for me --so please read I hope someone else can find this helpful.

I always viewed myself as a "bad sleeper", which I thought was due to waking to use the bathroom at night. I was up all the time. But, I never really felt tired, just thought sleep wasn't my best 'skill'. 

My husband said to me many times that he hears me holding my breath when I sleep. I figured I don't have sleep apnea because I'm slim and fit. I finally went for a sleep study and have mild-moderate apnea. I got an oral appliance (like a dental appliance) made because I didn't want a CPAP.

The first night --I slept right through the night !!

Now, most nights I sleep through.

What I realized, I was waking due to apnea, and going to the bathroom out of habit.

I think my original sleep problems first developed due to prednisone use, so I suspect many of you can relate to that too.

So, really PLEASE look at other causes than the pouch --I'm amazed at how much going to the bathroom has just become a bad habit.

Thanks for reading, Trina

I agree with everyone, how you eat has a huge role to play. I try to stay away from dairy since that always makes me go more. I take trazadone to help me sleep which thankfully has constipation as a side effect. That along with 2 immodium before bed usually helps me sleep up to 8 hours just fine.

Not being able to sleep through the night has been my biggest challenge since getting the J-Pouch. I usually wake up about 2-3 hours after going to bed. It's a mixed bag as to whether I fall back asleep immediately or not; about 50/50.

 

Through experimentation, I've found that the following process works for me. It's not how I'd like it to be but it's the best I've gotten it so far.

 

I try not to eat a heavy dinner and aim to finish all eating at least 2 hours before going to bed. I have found that I do best if I do not have vegetables with dinner (I eat a bowl of vegetables for lunch most days) so I usually have fish.

 

I try to have a bowel movement about 30 minutes before going to bed and I take an Immodium then. Then I go one more time right before going to bed. After waking up in the middle of the night, if it seems clear that I am not going to fall asleep soon and there are at least 4 hours remaining until my alarm clock goes off, I'll take 1/4 of an Ambien. That usually helps put me to sleep.

Most of the times I sleep without getting up at night. But few times I have to get up once in the night.

Yeah I think if you eat a lot and especially close to bed time, that's going to cause problems with sleep schedule.  I'm also what I call a "grazer"...like to eat throughout the day. I might suggest though, when you're tired you tend to eat more (studies have shown this) basically to compensate for the lack of energy you have. So this may be a bit of a vicious cycle you're on, just a thought.   

I don't know your eating/drinking habits, but I try not to eat or drink much later in the evening, and I will also stay up a little later if I think it might be one of those nights to have bm before going to bed.  I usually get about 6 hours of sleep before I have to get up to go to the bathroom...but I have had those nights where you have to get up 2 or 3 times...very annoying and of course you're not getting the proper rest.  Hope you might find the right combo of timing and diet so you can get some rest   Take care.

This could be my timeline exactly. Unfortunately, falling asleep hard at 5 am sets one up for a long day!

I rarely wake up at night, but I try not to eat a lot in the evening & go to the stool just before I go to bed. Works for me.