Julie - I agree with Pat - maybe the doctors should check the volume the bladder can hold. When I was cathing every two hours, and only two weeks into it, I was sometimes emptying 3-400 and at three weeks discovered I could hold 500. I wonder if you are drinking enough. If you are drinking plenty, then maybe you are not emptying completely. I remember the spasms...for me it was almost like a cramping; I would find myself having to empty earlier than I had expected and I would be fuller than I thought.
I kept a spiral notebook journal for the first two months...on each page I had four columns...the date and hour, the amount of liquid I had consumed during the previous two hours, then listed the amount of urine I emptied, and comments where I noted if there was leaking, irritation or mucus. That way I could keep track of my progress and better determine if I was putting out as much as I was taking in.
In my early entries I had lots of notes on leaking, some irritation, and many comments on mucus. I was able to extend the cathing to three hours after the first month and during the second month, I was able to move to four. We're all different and progress at different rates. It takes time and patience. Stay in touch and keep the faith. I hope and pray you don't have a hernia...doesn't sound like it to me. Hugs,
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
Well its possible depending on what you drink? My pouch expanded to hold 400cc's in 4 weeks......but training was interesting to say the least. I kind of have a routine with my drinking. I have about 16 oz of decaf in the a.m. and a glass of 8oz juice a few hours later. i usually empty around 350 to 400 at that point. 4 hrs later my output will usually be about 250 to 300 as i drink very little during the day and it stays that way until i go to bed. I do sleep through the night and my pouch will hold 600 cc's easily but that took over a year to train to do that.
Sometimes the pouch gets a bit cranky..it will grab hold of the catheter as if it had super glue on it??? Or the fluid in there just seems to want to play hide and seek with me but i just relax and wait it out and jiggle the cath a bit more. I actually can go almost all the way in with my cath. Usually do not have to but sometimes i do and i usually find mucus sitting down there that i cough up. Now i realize my stoma is at my navel so i get some addition help from my abdominal muscles in pushing it out...hard to explain..just a trick i found out after some time. Sometimes i even push up on the pouch with my hand.
Another trick is to drink with food..takes longer to get to the kidneys that way and gives you a bit of a reprieve on emptying......you'll figure it out.
dr large emailed me and thinks it is a spasm do to irritation,failure to empty completely or just getting used to being a bladder.
I feel like i empty completely i go in and out and rotate the cath
i just got 200cc and remember Im cathing every 2 hrs (because of leaking which has stopped now that I irrigate)could I have 400cc in 2 hrs??? thanks julie
Well i know the spasm pain you're talking about...its a signal to empty. I still get it if i go too long. It seems like either you're not emptying completely as by now your pouch should have expanded to hold about 400 cc's. You probably need a pouchogram which i had at 4 weeks to determine your capacity....that was standard procedure for Cleveland.
I hope that is what it is a pulled muscle. No bulge or when I push on the area no pain. I e mailed dr S and he is out of town but another dr will respond. i get any where from 100 cc to 200 cc during (usually 150cc) the day and i get 200 cc at night. the spasms are so gripping but they only lasts a minute or 2 and then subside. it is over my pouch and lower abdominal area (where my SP drain was) Im staying in and resting and taking advil maybe it will just go away.
is the pain on the incision line or near the stoma? Can you feel a bulge? I'd certainly have it checked out.
Not too long ago i actually pulled a muscle right to the left of my stoma and i swore it was a hernia...they did a CT scan and it wasn't..i had just pulled a muscle. It took quite a while to heal and i had to lie down and get up very carefully or i would pull it again.
How much are you getting out of your pouch at 2 hrs?