Sleeping through the night

Is it your Jpouch waking you up, or could it be something else?  For example, when I reached peri-menopause I had an incredibly hard time sleeping.  If it is your pouch, have you ever had pouchitis? 

Definitely sounds like something is up. I know I find sleeping the hardest if my pouch is being bothered. Is it possible you are starting pouchitis? Have any of your night or evening routines changed? When I start flaring with pouchitis I don't always have issues through the day, it's more at night.

Good luck.

In addition to what others have suggested, can you think of anything else that’s changed?

I was on Augmentin for a month and it still happened....although I have more leaking I'm doing about the same, and I haven't been doing anything different. Do you think that maybe my pouch is getting "old"...I'm 79.

Mema,

I have had problems along the lines of what you described with my sleep cycle most of my adult life. You may want to have a sleep study done to determine if you may have a mild case of sleep apnea going on (this was my diagnosis). I have trouble using CPAP and I got rid of the machine. I just deal with it and I do take the NyQuil equivalent when I am really sleep starved.

Here is an interesting link to Harvard Medical School’s summary of the external effects on the sleep cycle:

http://healthysleep.med.harvar...how/external-factors

Thanks, maybe!!

Mema,

You mentioned being 79 years old and FYI being over the age of 65 is a risk factor in sleep apnea:

https://en.m.wikipedia.org/wiki/Sleep_apnea

A sleep study would quickly diagnose any sleep disorder you have and if this situation persists I would recommend it. The usual treatments are to either lose weight or use the CPAP machines or both. When I was diagnosed in 2010 they gave me a machine which kind of sucked and I got rid of it, but I have heard the newer machines are more comfortable and less noisy. 

Sleep apnea is pretty common, though it most often shows up as daytime sleepiness rather than frequent episodes of complete awakening. Sleep studies can often be done at home now, which is much easier than doing it at a sleep lab. I’d guess that pouchitis is a more likely explanation than sleep apnea. 

I would only suspect pouchitis if Mema is getting up due to urgency or going to the restroom, which she has not indicated to be the case. Pouchitis never disrupted my sleep unless it was awakening me to use the restroom. Of course I have sleep issues regardless of Pouch function but unless I have urgency attendant to pouchitis, I wouldn’t be suspecting something Pouch related as opposed to non Pouch related. 

I would also note that untreated sleep apnea in persons over the age 65 can and frequently does lead to strokes. It’s not something you want to happen if it doesn’t need to, and it’s also something that is easy to rule out, or rule in, without guessing.

Fair enough - I misremembered the original post, which says nothing about nighttime bathroom visits, though more leakage is mentioned down-thread. Many different things can disrupt sleep, among which sleep apnea is a reasonable one to consider.

Thanks you all for your responses....I will definitely suggest a sleep study to make sure that I don't have sleep apnea and go from there. I'm taking a new CBD pill with the promise that I'll sleep better, so I'll continue with that as well and see what happens. I guess I didn't mention bathroom visits in my first post, but when I wake up, I always have to go to the bathroom. As I said before, though, when I was on Augmentin, I still have to go to the bathroom so I don't know what's up.

Pouchitis doesn’t always respond to Augmentin (Augmentin never helped me). So Augmentin not helping doesn’t tell you that it isn’t pouchitis. Have you had a pouchoscopy, or at least a discussion with a knowledgeable gastroenterologist? This is more likely to be helpful than a sleep study.

Based on your last post I would say your sleep issue probably is pouch function related.  If antibiotics are not helping there are biological drugs to try.  It seems like a scope should be done to see where things are at, if you have not had one in the past year.

Yes, Scott, I had a scope a few months ago and that's why the doctor put me on Augmentin. Actually I was great the entire time I was on Augmentin, felt wonderful actually, better than I had for a long time, but the night time episodes was about the same as they are now, maybe a bit better, can't remember exactly. I know that you're on an antibiotic, which one are you on? Cipro doesn't work for me anymore and I can't take flagyl, so that really limits me I would think.

I'm on Remicade, CT.... don't know what else I could be on.

Mema, I’m on Cipro and Flagyl. When Cipro alone stopped working adding Flagyl did the trick, even though Flagyl alone never worked for me. You could consider trying Augmentin plus Cipro. 

There are also other biologics to try if Remicade has failed. Humira and Entyvio are commonly used. 

Mema 1 posted:

I'm on Remicade, CT.... don't know what else I could be on.

For how long have you been on Remicade?

About 3 years or so. When I had my scope a few months back the doctor said that my Crohn's was so much better he couldn't believe it. However, I guess my pouch didn't look great because he told me to  take Augmentin for a month. Unheard of since usually he prescribes it for 10 days at most. I'm beginning to think that many I do have pouchitis and it's never gone away. Think I'm discouraged and tired of feeling exhausted and running back and forth to the bathroom all night.

Mema, 

I also take antibiotics with Remicade, but unlike you, my Pouch looks good. My instructions when I went on Remicade from my doctor were to reduce antibiotics to the lowest possible dosage. It sounds like you tried to cold turkey it and that’s not a good idea. You should go on a short course of antibiotics and reduce to the lowest possible maintenance dosage which may or may not be none. I have been on Remicade 4 years and rotate cipro and flagyl, augmentin and tinidizole in dosages that are one half or less than when I started Remicade. My scopes have looked much better since I began Remicade albeit with a similar pattern of inflammation at and just above the J Pouch inlet due to backsplash stool. Because of scattered inflammation in the neoterminal ileum I am considered Crohn’s. Usually Remicade works better on Pouch inflammation than inflammation in the ileum.