I've been having a real problem sleeping through the night. I've had my pouch since 2001 and never had the problem before. At most I'd get up one time during the night and that was it. The only good thing about getting up so many times it is that I no longer have any leaks while I'm sleeping any more if that's considered a good thing. I usually wake up two hours after I go to sleep and then it's every two hours from then on until I get up in the morning. Any suggestions or thoughts....I'm exhausted!!

 

Original Post

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.

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

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.

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.

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. 

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.

Maybe it's just gas, has your bed or meal time changed?  How about diet?  I nearly always wake 2 hours after going to bed, I get up and go to the bathroom (whether I need to or not), then go back to bed.  Usually I sleep through then, but if I have eaten a lot, too fast, bad food with lots of sugar, i tend to wake with every gurgle, which tends to be every 1.5 to 2 hours for me.

 

Sleep position can help.  I get less problems lying on my left side, lying on my right side prompts stuff to 'move' and then lying on my stomach allows me to pass gas.. I sometimes use the right side and Stomach lying to 'de wind' myself before lying on my left side and going to sleep.. I still Always wake up after the first 2 hours but that's probally my late eating hour.


 

I'm 66 and had my j-pouch in 2002 and second phase in Feb of 2003. I seem to get up every 45 minutes to in the beginning and then every two hours. If I get too awake or have a burning BM that makes it impossible to sleep I give up and get dressed. Sometimes it's 3 or 4 AM. As far as medicine go I'm only taking Entivio every 6 weeks, and just recently tested before my last IV to see how much is in my blood. May go to every 4 weeks. I just finished with 6 IV's of Iron Sugrose and blood level is still only at 10.6 from 8.3. Crazy, but still this sleep thing is what is going to be the death of me. I'm a light sleeper, and I sure as hell don't want an accident  in bed, and get up when I feel the urge to go. I used to have a hard time getting to sleep, but have found taking Niacinamide along with my normal magnesium 1/2 hour before bed really makes me sleepy. 

Sounds similar to me, and I'm beginning to feel the same way. Who needs the accident in bed, so I've decided getting up isn't so bad as long as long as I can fall back to sleep right away. What is Niacinamide, never heard of it before. Is it a script? I've been using a CBD that was suggested but it's so expensive and I'm not sure if that's the reason that I've been sleeping better or I'm just exhausted. I'm also on Augmentin again, I can't seem to be without it and if I'm not on it I have the runs constantly. Guess I've gotten to the point where an antibiotic is necessary or I can't survive. 

Thanks for your input!

LetLive, have you done anything else to help you sleep through the night? Have you been evaluated (or treated) for pouchitis? In addition, many find magnesium to act as a laxative. Since you’re finding the risk of an accident to be a reason to abandon sleep, you might consider an adult diaper while experimenting with taking greater risks. There are a few steps that have helped some folks. 

  1. No food for a few hours before bedtime
  2. Lomotil or Imodium at bedtime
  3. A small, fatty meal at bedtime (e.g. a spoonful of peanut butter)
  4. Soluble fiber with dinner
  5. Careful pouch emptying at bedtime

Good luck!

Niacinamide is OTC B-3 (Niacin), but it is combined with an amino acid, so no flush. I read it would help with sleep, and it works for me. The form of Magnesium I take is Glycinate. I read that Magnesium Citrate can act like a laxative. I have a bottle of Magnesium L-Threonate, but it used to wire me up, but I haven't taken it with the Niacinamide yet. Insoluble Fiber...I stay away from raw veggies, don't eat much fruit, popcorn is out, no nuts or peanuts, have a problem with wheat thins, tortilla chips, taco shells, no beans or anything with a seed and some skins. Don't eat sugary stuff or drink alcohol.

Scott, please tell me the difference with Soluble Fiber and Insoluble Fiber. My nutritionist told me to use Insoluble Fiber and it gave me the runs. Why do you take Soluble Fiber with dinner? I have the pills so hope they work as well as psyllium, which I can't take.

Psyllium is the most common soluble fiber used by J-pouchers. Not everyone does well with it, and some find it gassy, but it does tend to thicken and bulk up the stool. I’ve used it every day since my surgery 17 years ago. Alternatives to psyllium include Benefiber and CItrucel, and some folks do better with one of those, while others do best without soluble fiber supplements. Some doctors apparently recommend taking these with smallish amounts of water, but I think that’s bad advice, and I advise using the amount of water recommended on the label. Psyllium develops a gel-like consistency in water when it sits, and I think that’s exactly what it does to a J-poucher’s stool. I didn’t get good results with psyllium capsules, since they didn’t mix well with the rest of the stool.

Insoluble fiber is challenging for some J-pouchers to process, though many of us are just fine with it. Think of raw veggies, skins, etc. It tends to come out looking rather like it went in. It can be helpful for people with colons who are prone to constipation (prunes!), but I don’t think insoluble fiber is particularly beneficial to J-pouchers, though the fruits and veggies are themselves nutritionally beneficial. I eat plenty of fruits and veggies, but not as a way to intentionally consume more insoluble fiber. It seems like a bizarre recommendation from that nutritionist. 

Here’s the Wikipedia distinction, but like most general advice it assumes everyone has a colon:

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