Thanks, CT....I think it's time to speak to my doctor and maybe even send your message to him to see what he thinks. I just hate being on antibiotics and am terrified of c.diff.....have you ever had it??
No never had c diff in 25 years on antibiotics. Rotation is my big key. It has I believe prevented me from developing side effects that plague others. I never stay on any one antibiotic longer than 2 weeks.
Thanks again, you've been very helpful!! 
I think it's time to make a change for the better, hopefully anyway!!
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.
Interesting!! Part of my problem is gas and I know if I expel it in bed it won't be just gas. Maybe I'll try turning on my stomach to see if that helps. Thanks for the advice!
Melatonin is an over the counter supplement that's been helping me. The doctor said it didn't interfere with any of the medications I'm taking. I use to take sleeping pills but they caused a mind fog the next day.
Thanks, TE Marie, but Melatonin doesn't work for me....my main problem is waking up because I have to go the bathroom.
I hear you on that one Mema. I don't miss my j-pouch and that is one of the reason's why!
I know, but I don't know how much I'd love having a colostomy either.
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.
- No food for a few hours before bedtime
- Lomotil or Imodium at bedtime
- A small, fatty meal at bedtime (e.g. a spoonful of peanut butter)
- Soluble fiber with dinner
- Careful pouch emptying at bedtime
Good luck!
Soluble Fiber at dinner....that's interesting. I'll have to try that!
Thanks, Scott!
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.
LetLive, I was suggesting soluble fiber, such as psyllium. I definitely wasn’t suggesting insoluble fiber.
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:
- Soluble fiber – which dissolves in water – is readily fermented in the colon into gases and physiologically active by-products, such as short-chain fatty acids produced in the colon by gut bacteria;[1] it is viscous, may be called prebiotic fiber, and delays gastric emptying which, in humans, can result in an extended feeling of fullness.[1]
- Insoluble fiber – which does not dissolve in water – is inert to digestive enzymes in the upper gastrointestinal tract and provides bulking.[1] Some forms of insoluble fiber, such as resistant starches, can be fermented in the colon.[1][3][4] Bulking fibers absorb water as they move through the digestive system, easing defecation.
Wow, thanks so much for all the information .... you're incredible! 