Hello to everyone, I'm new here, and new to the JPouch as well- I had my one-step-surgery seven weeks ago. Times are hard, although I know that patience is required.

My main concern are the nights, and I wonder if anyone has made similar experiences.

While throughout the day things are mostly fine (thanks to metamucil and a good diet), at night things suddenly go crazy. Whenever I go to bed, things are starting to feel "uncool", and some hours (and several trips to the bathroom) later I get what I call "acid attacks"- liquid stools that hurt very, very badly, and there seems no way to stop them.

Most of the times things start to relax at 4 or 5am, but the lack of sleep is no fun either.

So, since I've tried all different kinds of things (loperamid at different times in different doses, metamucil during the night etc.), I would like to ask if anyone can help me here with some good advice on how to make the nights less horrible.

I'm writing from Germany, where, by the way, you can't buy metamucil wafers, only the orange powder. (If anyone has an idea on how to get them anyway, I'd be thankful as well).

Alex
(Hamburg, Germany)

It might be worth eating some "bulking foods" such as a banana before you go to bed. Some people find that eating before they go to bed helps to keep things relatively solid at night.

Alex,

Sorry to hear that you are not getting much sleep. I know how frustrating that can be. My experience after takedown was very similar to yours. I would have to get up multiple times with runnier stools than the daytime and didn't get much sleep at all.

Here are some things that helped me:
1. Gas-x (simethicone). I found that gas was causing a lot of the urgency to go
2. Time. As you are probably aware, time does a lot to healing things and settling them down. The night times should improve as time goes by
3. Early on, when I was having so much trouble, metamucil before bed did not help me at all. It just didn't make a difference, so don't get frustrated by that. I am now 3+ months post takedown and now the fiber helps a lot
4. Probiotics may or may not help at this point, but are worth a try. I eat a yogurt a day. Yoplait has 3 active cultures and works well for me. Other people try probiotic supplements or VSL#3
5. Sometimes I would make sure and eat a very light, small meal for dinner - foods that could be absorbed instead of passed through (soups, etc.). Some people experience worse problems with this but it's worth a try to get some rest
6. If you are 7 weeks out, you can try some immodium (loperamide) before bed and during the night. That should help for sure

Hang in there. I know it's frustrating but will get better and better.

Steve

Thank you very much for your answers, I will give it all a try.

Yet another related question: sometimes during the day or at night there seems to be some button pushed inside me that keeps on indicating going to the bathroom. During the day it can sometimes be stopped with metamucil, but during the night it's more difficult.

It keeps on urging even after there is nothing left, and then all I get is what I must consider pure acid, or at least so it feels.

How can I find the "button" at night? Loperamide seems to help sometimes, but then again not always; are there any other ways to switch that button?

Thanks,

Alex

I also had a One-Step Jpouch surgery and it was done 4 months ago. The first two months of recovery were very difficult and I know what you mean by horrible nights.

In addition to the advice above, I suggest the following:

My only advice is to eat early in the day. Eat a decent sized breakfast and lunch. After lunch just have little small snacks/meals. Then 4-6 hours before bedtime, I would stick to liquids and if you are hungry have some very light bulking snacks like piece of banana, peanut butter, etc. Since food tends to take 3-6 hours to go through you, eating earlier in the day should do the trick. If this works, then the worst of your day will be between 6pm-midnight, not midnight - 5am.

Also, take 2 lomotil before bed. When I had the burning stools, I would soak in a very warm sitz bath for a few minutes after each bathroom trip. That should go away in time.

Alex,

I believe the problem has to do with spasms in your sphincter/anus. It seems like that's a problem early on. You are using them WAY more than what they're used to - meaning they do get better over time.

I found the only thing that really helped calm them down was percocet (narcotics). It's a very annoying problem and one that keeps you up at night.

I also found that I could sometimes do better sleeping in the recliner. I think that's because I was putting pressure on my bottom that way. Might try it.

what is exactly a sitz bath and probiotics???

A Sitz Bath is a lifesaver when needed

It is a basin that fits on a toilet seat and is filled with very warm water. One then sits on it. The warm water is very soothing and healing. They are found in most pharmacies for around $10-$20.

Probiotics are cultures of beneficial bacteria that are normally present in a healthy digestive tract. The theory is that ingesting good bacteria, helps prevent pouchitis and helps to maintain a healthy pouch.

I was also going to suggest pain killers. When my daughter wanted to go long periods without a bathroom, she would take codiene and it would take care of things for hours. Of course that is a last resort, but if you are getting sleep deprived, then maybe you should try it.

Is Probiotics something that you need a prescription from a doctor??? The Basin is a good idea...

Alex,
I know exactly what you're going through.

I had the 2 step, but struggled for about a year and a half with the exact problem you describe.

First and foremost, it will take time to get better...

Also- did you have your gall bladder removed? I had mine removed, so I suspect that may be contributing to the problem.

However, here's what I learned that works for me from a LOT of trial and error:

1. I stopped fiber all together. It was DEFINITELY contributing to the spasming big time. However, the smoother/easier fibers didn't cause the spasming as bad. (i.e. Metamucil Smooth Texture, Cirtucel, Benefiber, etc.) I learned this by mixing different fibers together- while the more coarse stuff worked better for slowing things down and bulk, they caused WAY more spasming, leading to more nighttime accidents/trips to the bathroom. (and pain)

2. EAT. Most people here have suggested over and over to not eat/drink anything past say, 5:00pm or 6:00pm. If I do that, I end up worse off most of the time, because the output continues, and without food to absorb the naturally occuring battery-acids to break down that food, it causes a burning sensation in my pouch/cuff, causing urgency. The added benefit to it is that I don't go to bed hungry!

3. Immodium works very well for me- Lomotil does NOTHING for me. I try to take 1 Immodium with each meal during the day (no big deal if I miss one, because like you, I don't really have any problems during the day), and 3 Immodium at night before bed. I've also started taking 2 Lomotil at bed too, because it makes me drowsy. (I often have trouble sleeping, because I have trouble getting my head to turn off at night)

4. At night for dinner, or before bed when you eat, stay away from the foods you know cause problems for you. I got a rice cooker this past XMAS, and I now eat white rice with soy sauce 5-6x a week! SUPER easy going through, and does a GREAT job absorbing those digestive enzymes, without the added trauma of fiber.

5. I've been taking PB 8 (probiotic), and seems to help. (2 pills a day) It's REAL cheap online and doesn't have to be refrigerated.

Finally, take a look at this thread- I chronicled my frustration with the nighttime problems, pouchitis/cuffitis, fiber, etc. It was all through the trial and error, and the UNBELIEVABLE support from the people on this forum that got me on track!
Pouchitis Flare?

If you need something out here that you can't get out there, let me know, and I'd be happy to send you out a care package!

//Todd

Well, thank you all very much for your contributions. I will definetely try to eat rice before bed, hoping that it will indeed absorb some of the acid that bothers me at night.

I've been working with Loperamide (same as Imodium?) for a while, and, well, as any of the dieting or medication attempts, there would be enough weird experiences to compose a doctoral thesis.

Sometimes I took 1 Imodium after each "loose" bathroom trip at night (while these trips sometimes seem to be neverending stories), which sometimes helped for some hours.

On the other hand, I have also experienced the Imodium being "run over" by the pouch activity, which made things even worse (same with codeine, which was supposed to put an even stronger stop to action).

Lots of try and error, just like you described in your very interesting long pouchitis-thread.

Are you serious about the care package? That could be very helpful for me, since some of the things you guys write about are just not available here.

Another thing: has anyone here been put on drugs like valium to soothe down the whole organism (supposedly including the pouch)? What are your experiences with tranquilizers?

And: there are supposed to be medications that reduce (or bind) your gall acid (I'm pretty sure I still have my bladder). Any experiences with these?

Thank you very much,

Alex

Alex,
I was absolutely serious- let me know what you can't find, and I'll send it out for you.

I haven't messed with the tranquilizers, but I was taking vicodin/norco (still do on occasion) because it really slows things down, and takes the edge off. (pain)

I think I've read of people taking Prevacid for the excess acid, but not sure.

//Todd

This message has been edited. Last edited by: ToddL,

Hi Alex,
I'm not quite 2 months post-takedown, and have been going through the same things as you. I have read a great many books from the cold comfort of the toilet between midnight and 5am. I kind of figured that I must have pouchitis or something, and after reading many posts from this website I decided to ask my surgeon to put me on Cipro (Ciprofloxacin 500mg twice a day) which is an antibiotic commonly used for pouchitis.

Since reading the posts generated by your post, I wonder if i even had/have pouchitis or if this is just a fresh off the surgery train situation. (i.e. no blood, no pain, no real trots action just the 'scrambled eggs in a cheap diner' consistency...)

At any rate, I asked my surgeon for the cipro, he said yes, but also put me on flagyl/aka Metronidazol (only 250 mg twice a day -because I'm tiny). So within 24 hrs I was fine- slept through the night the first night!! So I was taking both for about 2 weeks- from 2nd of January, til around the 15th, but after the course of antibiotics was done, within 24 hours I was back in the bathroom all night. I then called my GI specialist and asked for more Cipro- (500mg twice a day) and I'm fine again (tho not quite as perfect as I had been the first time- i.e. I get up once or twice in the night which is of course still pretty beautiful)
So maybe it's worth your while to try Cipro or the two together? The lack of a normal sleep pattern is terrible, so I hope you can get some relief soon.
take care, and hang in there.

Oh, also, I would definately agree with not eating past 5pm or so, to give yourself relief. I also have used tylenol 3 (they have codeine in them) to slow down motility right after eating.

GOOD LUCK- it will get better...!

Hey Alex, me again-
I almost forgot- someone mentioned that it could be spasms...
while i was in the worst of my non-sleep action, before asking for cipro, my mom ran into a nurse in a department store. Having the unfortunate hospital history that I do, they recognized each other and my mom told her all about my current situation. The nurse recommended getting an anti-spasmotic drug, the name of which I have forgotten, other than that it starts with a B and is something along the lines of Baskupam (??) (with probably many more letters). I didn't get it, as by the time Monday roled around I was intent on getting cipro...maybe someone out there knows the drug I'm trying to dredge out of my memory?
I'll try to find out and re-post when i do!
cheers!