I really need to vent. I am at the end of my rope! I have had a j-pouch for 8 years. I am one of those lucky people that go 20 times a day. I have tried everything from lomotil to cipro. I am told that I have a heathly and generously sized pouch, but one that has extremely high motility. By the time I return to my desk from the restroom, I have to go again! I am either in the bathroom or on my way to the bathroom. I am sitting at my desk wondering how I am going to make it through the day. I am so tired. I have not slept more then two hours in a row for so long....... I am the primary financial provider for my family. I have a very high pressure job that entails 10 hour days. I spend a huge amount of time waiting to get the bathroom to myself at work. I am not sure I can keep this up much longer. My boss is extremely understanding, but I am in danger of losing my job soon, due to downsizing. I am so concerned that my next employer will not understand. I wonder how much more of this my poor husband will be able to stand. We have a 7 month old baby, (who is perfect, by the way). I am trying not to completely lose it at my desk right now. I am going to call my GI this morning and inquire about tincture of opium. I am hoping this will bring some relief. Thanks for listening. I just needed to get that off my chest.

Keep venting! Have you tried discussing Remicade treatments with your doctor? When I was pregnant I could not get anything to control the output..but remicade was a miracle! I never felt better. Just an idea..it's IV therapy. Hope you figure something out I too, have had my Pouch for about 8 years...i have leakage and just found out i have a pouch-vaginal fistula and possible chrons! Keep venting! I'll vent back Hang in there

michelle

Hi Max,
Well first off, vent away...Lord knows I do it all of the time. Second, when my K pouch was leaking copiously and I had to work 2hrs from home (public transportation++!!!) teaching 4th and 5th yr MBA kids...I fasted. That was the only answer for me. I could not leave the classroom and had no private bathroom for teachers. I also couldn't risk the leaking of either air or stuff so...I fasted.
I would eat a decent dinner but nothing after it and then work through the day on an empty pouch...first food in my mouth was when I walked through the door...not ideal but I managed fine after the first few days...the pouch stayed dry and so I barely had to intubate (our way of emptying)...I drank only water and black coffee all day long. Every time that I have to go out for long periods of time of have to travel I just fast. I hate the risk of accidents/leaks or worse not being able to find a bathroom.
It might seem drastic but it is rather effective for me.
That and severe diet modification (only protien meals so that there is very little residue in your pouch) are my only suggestions.
Good luck finding a solution and hang in there.
Sharon

I was determined to have an excessive amount of motility or a "spasmodic bowel", as my surgeon called it, and it was successfully treated with bentyl, lomotil and donnatal. It is a very frustrating problem to say the very least. I am surprised the anti-spasmodics have not helped you. In my case, they provided immediate relief when taken about 45 minutes before meals. The problem also seemed to calm down over time and now I only need to take 1 donnatal at bedtime.

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

Another suggestion since you are at the end of your rope - have you tried taking an antibiotic? I felt exactly how you felt for months before realizing it wasn't normal to feel that way (having to go all the time, etc.). The minute I started cipro my life changed and I realized how a proper pouch should function!

I know you say your pouch is healthy, but maybe the pouchitis didn't surface when you had your scope? Anyway, it certainly couldn't hurt to try taking cipro or flagyl to see if they make any improvement to your condition seeing as you seem to have run out of other options.

Let us know if you figure out something that works!
Kristen

First, let me say that I do not know what I would do without this site. I visit it every morning before I start my day. Sometimes posting, but mostly just reading. The support I gain from you all is amazing! Thank you. My doctor prescribed tincture of opium yesterday. I requested it after reading about successes on this site. He said he had not given it to anyone in ages, and he was curious to see if it worked. I will let you know if it works. He also gave me another precription for Cipro, but told me to hold off using it until we see if the tincture works. A lot of times, I try several things at once and never know what is working. I will keep you posted. Now that I am no longer breastfeeding (made it 7 months!) I am going at this with all my energy. I am determined to find a combination and that will greatly improve my daily life.