Have you tried taking an anti-spasmodic at bedtime? If that doesn't resolve the issue I would say the frequency is due to pouchitis or SIBO that has not been brought fully under control.  You may need to be on antibiotics longer.  A lot of people here think a one time "pinprick" antibiotic dosage of 7-10 days will do the trick.  In my case continuous antibiotics are needed just to keep the pouchitis at bay.  It is in a constant "simmering" state for 20 years and I have taken antibiotics continuously for 20 years.  The pinprick approach with antibiotics often does not work.

Hello.  I am also struggling with the same issue.  I work really hard not to eat anything or drink past 6 or 7 at night.  Sometimes this works, sometimes it just builds up with more gas.  I also take immodium 8 x a day but being very careful to space it out with the antibiotics I am on so there is not cross interference with treatment.  Do you feel your pouch is not emptying all the time too?  Sometimes that's what I feel like and I think I'm good to go and then 1/2hr later I'm back going.  I used to never have this probably until C-Diff and giarderra came into my life.  I was free of all issues for 18 years! The past 7 have been tough.  Hope this helps, but definetly let your dr. know what is happening.

Patti

I have this issue and I had surgery four years ago. I am like CT and prob have some low lying pouchitis but I don't like taking antibiotics continuously and other than this nighttime issue My pouch functions pretty good during the day. I do not think it is uncommon to be up at least once during the night with a jpouch. You can ask for a prescription for lomotil which may slow things down. I do notice when I take this I can get longer periods of sleep but the meds seem to make my nasal membranes very dry which irritates me. Not sure if this is a coincidence or not. I agree with CT that for some if us we need longer or continual use of antibiotics for optimal pouch function.

I have the same issue. I can only attribute it to gas. If I had pouchitis I would imagine it would effect me during the day just as much but during the day I do pretty well right now. I am 3 weeks or so after takedown. I'm going easy on sugary foods right now thinking that in the afternoon I tend to snack more on sugary foods which comes around to me near bedtime. We will see.

Thank you for all your responses, I have tried taking Imodium but doesn't work as well anymore, but I will definitely look into Lomotil and other things that might help slow things down.  I think it's just a matter of watching what I eat and staying hydrated and of course finding the right combination of antibiotics again, as I think I've become resistant to cipro and ceftin now.  Has anyone also had improvement taking (4.5) low dose naltrexone?  I used to be able to take Tylenol 3 at night to help slow things down, but now with taking the LDN, it decreases the effects.

I'd guess that naltrexone would prevent Imodium, Lomotil, codeine, and any other opioids from slowing the gut.

 

Maybe try switching to Flagyl, or one of the other pouchitis antibiotics?

So glad I took the time to come online.

I have had a J pouch for almost 20 years, and have had the same issue off and on for most of that time.

I have tried a light dinner, and or not eating for 3-4 hours before bed time.  That might work, except for the fact then I wake up in the night so hungry I can't go back to sleep until I get up and eat something.

A good night is one when I only get up 2-3 times, and those don't happen nearly often enough.

I'm so tired of being tired.

I've tried high fiber, low fiber, probiotics, anitbiotics, Imodium, and everything else my doctor has recommended.  They all work for a while, and then I'm back to square one.

 

I'm open to any suggestions at this point.

Try reducing carbohydrates. A lot. All carbs in general, but sugars and highly processed grains specifically. You may be sensitive to lactose (milk sugar).

 

This means pay attention to your fruit intake (type and amount), less bread, potatoes, crackers, candy, etc.. No high fructose corn syrup. All that stuff with a long shelf life. You may have an intolerance to gluten, so a big reduction in wheat, rye, and barley products may help you. Beans, legumes, and rice are OK in moderation.

 

This is the plan if you think you might have SIBO (small intestine bacterial overgrowth). It can help your probiotics and antibiotics be more effective. 

 

It sort of boils down to this if you have tried everything else, and even then it may not work for you. But do not expect instant results. Takes many weeks or months, up to a year. 

 

Jan

Thanks Jan

Sometimes I overlook the simple things.

I am seeing my doctor today.  Hopefully we can come up with a plan.

 

 

Jan , thanks for the info about the carbs. I'm actually starving myself during the day to try and get enough uninterrupted sleep. I keep a diet journal with times I eat, what I eat, how much I eat and when I go to the bathroom. I have script for Lomotil but I can't get that 8 hours sleep. Spoke with one nutritionist and he only worked with one person with short bowel syndrome. I'm currently in process of working with another dietician. I'd give ten grand to sleep for 8 hours a night for the next 20 years.

 

Diagnosed with UC at age 5

 2 step sub-total colectomy in 1989

been struggling with sleep deprivation because of getting up at night for ten years, causing other problems now as well.

 

 

Gee, 8 hours of uninterrupted sleep is a tall order! Probably too much to ask, and I doubt worth starving yourself to achieve. When things are really good for me, I will sleep a solid 5-6 hours, but I can't say I've slept a full 8 hours without being sick since I was in high school. I get up once during the night to let the cat out and I empty my pouch then, whether I feel the need or not. I always go right back to sleep. 

 

Jan

This may be worth re-posting here:

 https://www.j-pouch.org/topic/o...anged-my-life?page=1

Here's another suggestion, based on my experience : the many bathroom visits during the night (or day, for that matter ...) may be due to the pouch not emptying well. In this case the solution for me has been to use a ("Medina") catheter to empty the pouch well. The result was amazing ! I went from 5-10 trips/night to 0-2 (probably 1 on average) !

Try it, you have nothing to lose ! Look for the thread "Irrigation tube ... anyone ?" for details ...

Good luck, keep us posted !

My Doc gave me a sleeping pill. It helped in the beginning when I was getting up quite frequently at night.I only get up one or two times per night now so I cut it back to half a sleeping pill. the pill helps you get back to sleep after you've been up for 15-20 minutesThe one drawback,The pill puts you into such a deep sleep that you may have some accidents. What happens is you are in such a deep sleep when you pass gas you may actually pass some smallleakage. I had many other issues which had to deal with the cuff which had a remainder of myulcerated colitis issues and that had to be cured first with an anti-inflammatory foam things are still not great and probably never will be so we just want to live with it I guess I am presently experiencing lots and lower left quadrant pain which I can't seem to figure out visiting both the Gastro and surgeon over the next couple weeks

 

 

Repeating myself here, but Tylenol 3 (w/codeine) helped some, but since I have switched to opium tincture I can sleep 6-8 hours with no leakage or getting up. (I had been having frequent accidents at night). I often eat dinner about an hour before bed (due to schedule). I have found that a small glass of wine or even 1/2 bottle of beer with dinner will increase my chances of having problems.

My GI doc totally supports the use of opium tincture. I don't feel addicted to it and it only caused a little "high" the first 2 times I used it.

I have had my j pouch for about two years. About 6 months in I started getting pouchitis regularly. Tons of urgency day and night. Up lots at night. I would take Cipro and it would go away for a few months and then come back again. We tried all sorts of tests to check out my intestines and see what was happening. Eventually my surgeon saw that I needed to dilate my rectal cuff inside regularly. I was terrified to do this. He said I needed to get a dinner candle and shave it down until it was the size of my thumb. And then I needed to insert the candle into my anus and wait a few minutes so that I was dilated. I started doing this everyday. It has changed my life. It was hard at first but now it’s just part of the routine before I go to sleep. I’ll dilate myself and go to the bathroom quite a bit so that I can sleep better at night because I’ve emptied out.

I still got pouchitis a few times after I started using the candle though so I have now started giving my self a tap water enema every night after I dilate with the candle.  I have been doing this for about five months and have felt the best yet. I do the dilation and then the enema every night before I go to bed. It sounds bad but I just watch Netflix and it takes about 20 minutes for the whole thing. Just part of my routine now and not a huge deal. For how it makes me feel, it is absolutely worth it. I usually take 2 immodium when I wake up and two in the evening. Hardly ever need more than that. I regularly sleep through the night without having to use the bathroom now that I’ve been doing the enema. And I normally eat whenever I want. Sometimes eating late causes issues but not like it used to before I was doing the enema.

It’s not perfect but it has changed my life and made things so much more manageable. I’m 31 years old. Have a j pouch because I got colon cancer and 28 and they had to take my entire colon. I’m very active and love running and playing basketball. These forums have helped me so much that I thought it was time I started posting things that have worked for me.