Hi Everyone,

I am newer to this site but not new to my j-pouch. I have read a lot on her but never posted.
I don't know why I didn't write in long before now but I am here now and I hope you can help me.
My j-pouch surgery was in July of 2005 so it has been a over a year and a half. I had my surgery done at the Cleveland Clinic and, lucky for me, it is only 30 minutes from my house. The surgeon was Great and the GI department has been helpful but I am still struggling.
While my health is excellent, I feel great and my energy is amazing - my nights are still very bad. I thought maybe this would get better after a year so I waited and waited but no luck.
For some reason, I am up 4-5 times a night to go to the bathroom and this happens on most nights. I might get one really good night's sleep a week and that is the one night I take a sleeping aid just so I can sleep deeper and am not as aware of my pouch. I currently take 6-8 immodiums a day and 2 metamucil tabs or 4 wafers. I don't eat late at night and I don't eat big dinners. I haven't been able to figure out what I am doing wrong and I just am craving to only wake once during the night, like I was told would happen, and to get a decent night's sleep. So, since the doctors haven't helped me beyond the above suggestions and I currently do not have cuffitis or pouchitis, can anyone please give me some advice. I really appreciate it.
Annejo
Solon, OH

I used to be the same way. I took 6-8 immodiums a day and got up frequently during the night. I don't think the year mark is a magic number I think it could take you longer to get adjusted. Because now, seven years later, I take no immodium; I take probiotics and some vitamins and that's it. I decided that it wasn't doing me any good. I think in time that my pouch has increased in size and my ability to hold it and wait has increased as well. Do I still have nights where I get up 4 times? Yes. But it is less frequent. I know I'm not giving you a "fix- it" answer but hopefully you can be encouraged that it could get better with a little more time. Maybe practice holding it longer during the day and try to increase your pouch size so you won't notice it as much and need to go as often.

Thank you, that is so encouraging. I never thought about it taking longer. I do great during the days, most of the time. It usually kicks in about 6:00pm and then I frequent the bathroom until morning. I also take a probiotic along with vitamins. If I just wasn't so aware of it at night. I think that when I lay down, it's worse and when all is calm and quiet, I am so aware of my body. With 2 little ones, I have no time to think about it during the day. I appreciate your response.
Annejo

i am 2 1/2 years from takedown and i still g et up 2-4 times anight once in a while more. my health overall is great. had poouch exam and surgeon said it looked great. it is just our new life. dont fight it. i can get back to sleep easily so i just get up, gok and get back to bed. my wife and i doi separatebeds now cause i would just wake her up. but my days too are just fine and about 6-7 it begins. so, i ju st say, so be it. it is better than UC and cancer for me.

tawke a nap once in while. get to bed earlier. be a bit tired. drink more coffee.

it is just a new reality. it took me two eyars to reconcile.

welcome to the world of jpouching! lol

You didn't say how often you go during the rest of the day, just that the days are pretty good until about 6:00 pm. Perhaps that is part of the problem?

I decided some time ago that I would much rather go more during the day if it meant I could sleep at night. And the thing for me is, if food goes in... food will indeed come out. So maybe:

1. You eat during the day and only go a couple times.
2. Food moves slowly enough through your system during the day, but sits there, lying in wait ;-)
3. Around 6:00 the immodium wears off and things start to move. When they start going, they just keep going because there is so much there to move through

And part of the problem is that our bodies, once used to a routine, try to keep to that routine.

I think my advice would be to encourage you to keep trying different things. Maybe turn your routine on its head and drop the immodium during the day (I would keep up with the metamucil), and take some only before bed. This will mean more bms during the day, but if you can get b-fast and lunc cleared out before you go to sleep, you should sleep much better.

Just a thought, but if you seem to do better on the nights you take a sleep aid (and I assume no accidents as a result?), then I would think talking to your Dr. about a sleep prescription might be a good idea.

Rick

I appreciate all the advice. I have tried taking immodium just at night but at that time wasn't taking metamucil so that is a good suggestion. I definitely would prefer to go more during the day. Maybe I should eat breakfast at dinner time and diner for breakfast :-) Believe me, I have thought about it. I wonder what I am doing or not doing that could help. I do understand that this may just be the way it is. The problem is I am not a morning person and I still have to get up with the kids. They are little and I don't get to take naps (would be great if I could). I'm not really that tired during the day. I just miss those really good sleeps at night. But I am blessed to have my health back and to not have UC any more. I'm not trying to sound ungrateful because I am very grateful. I just thought maybe there was something else I could try. Also, not sure I want to take sleeping aids all the time. They help me a lot but because when I do get up during the night, I can get right back to that deep sleep.
Anyway, thanks all for your help. If you think of anything else let me know.

annejo, I wish I could help, I am over four years out from my takedown and consider myself to be in great condition, I do however have a couple of small problems, one being the "dreaded ITCH" (which I think is getting better) and the other is getting up 2 or 3 times a night, And I am hoping that it to, will get better as time goes by, I wish I could be of more help. I have noticed that as time goes by I am sleeping "deeper" (still getting up) but that maybe the quaility of sleep is better, (if that makes any sense!) Good Luck, Den

I was dealing with the dreaded itch last night too.
I started out fine, fell asleep and woke up around 2:00am. That was it for me. Didn't get back to sleep until around 5:30am. Every little feeling, I am so aware of down there and I just have to empty. Sometimes there actually is alot and other time, not much stool. Where does it all come from? I don't consider myself to be a big eater and it just seems to keep coming. And then the itching started and the burning. I just read about the ILEX cream. Has anyone tried it? I also was thinking about a bidet attachment for my toilet. Boy, a warm stream of water shooting in my butt would sure feel good sometimes. Does anyone know about bidets? I've been looking at them online and trying to figure out if the attachment will work well.

There are a number of people who sing the praises of the bidet. Do a find on the word and you will see what they say.

As for me, my solution to the itch is Gold Bond medicated anti-itch ointment. Slap some of that inside and out and it usually takes care of it within 5 minutes.

And yes, there are plenty of people who love ILEX cream - though I don't know how it does with the itch, just the burn.

Sorry you didn't sleep well again. Do you possibly have some spasms down there causing the feeling like you have to go? I know there are some things to try for that problem (can't remember but your doc will).

Never heard about spasms. I'll check into it.
Thanks!

Annejo- have had a j-pouch for almost 8 years (currently diagnosed with pouchitis for the first time) and have looked far and wide for a solution to the problem which many of us share. I have yet to sleep for more than 4 hours straight and usually get up 3-5 times a night. Not trying to bring you down, it's just something you may have to deal with till some miracle drug comes along. For me, Im so happy to be off the evil prednisone that this problem seems like a fair trade. But I surely feel your pain. It's good to hear that you somehow have your energy during the day. Good luck.

Believe me, I have thought that maybe this is just the way it will be. I am thrilled to be off prednisone. I am also trying to adjust to my "new life" and my j-pouch which has saved my life.

I do appreciate that there was a way out of my disease and I don't have to live with it anymore. But I and, we all, live with a "newness" that just for many takes time to get used to. I don't let it bring me down. I have a positive outlook and I am so happy to be doing everything that I couldn't do before.

It's just a craving for sleep that I have and I still have hope that maybe there is something else I can do right or something I am doing wrong that will help. Just like the day I came to terms with the fact that I had to have the surgery. There was nothing else left for me to try and so I entered into it with 100% readiness, confidence and hope. Knowing that my colon, which at that point, I absolutely hated, was going away. It had ruined my life and I was ready for it to go. I even wrote a farewell poem to my colon (I know that sounds corny but it was part of my healing process).

So, when the time is right and there is nothing else I can try, I will accept that fact that my nights will be interuppted and continue to appreciate all that I have been given in return. I am so grateful!

Annejo,

I agree with others who have posted. I had so many night problems! I was needing to get up every 45 minutes no matter when I stopped eating. Even with that, I was having frequent control issues between bathroom visits. I was convinced that I would never feel in control of my nights.

Finally, almost exactly 3 years after my take down, things settled down. I'm no longer taking immodium or fiber supplements, and am only getting up an average of one or two times a night.

Looking back, I had a tough time with the surgeries, infections, blockages, etc. I guess it just took my system longer than the doctor projected....

I don't think there is a magic time that everything will be perfect. Keep the faith though - It can get quite a bit better!

Carrie

I TOTALLY agree with Kaboom. I am an advocate of sleep aids! I know that my days are miserable if I don't get a good nights sleep. If a sleep aid is what it takes to put you into a deep enough sleep that you can sleep through the 'urges'. I'd say take it!
I do. Otherwise I am a very light sleeper and every cramp would wake me and send me to the bathroom. No Thank you!!!