New member - just saying hello!

BJ and all in the UK.......seriously your consultants have said to hold to 700cc capacity in your new bladder? Thats really too much...no wonder you're leaking at 400. I want to hear more about this!.........Pat

Ok that makes a difference...l year instead of l0 days..(The Fistula)....Well i guess thats a possible explanation for the bladder not stretching....we'll have to see if anyone else has had that problem on the forum. Gradually sneak the times up of cathing...next week go 3l/2 hrs and the following 4 hrs. Have they done a test on you at the hospital to determine your capacity? I had that done about a month out i believe. I don't know what to tell you about the nerve at the opening of the stoma.....i have absolutely no sensation there. Where is it located? How much are you drinking? And when you do cath how much is coming out? Do you have one of those measuring cups measured in cc's that the hospital gave you or at least gave me? You can get one at a pharmacy that sells medical supplies. My normal output at 4 hours is between 250cc's and 350'cc's dependent on my intake of fluids...if i drink a lot i will have to cath sooner. It takes a while for the pouch to rest at night...i really couldn't go 6 hours until 2 years out. Try the softer cath and let me know if that helps..........Pat

Hi XCV

I had my bladder removed in April 2006 - 12 hour operation - complications afterwards resulting in anothe 10 hour operation in June 2006 - then more complications which meant I didn't start to use catheters until late August. I did have some discomfort occasionaly when using a catheter but it soon improved. The stoma area has certainly become less delicate over the months. I didn't have any leakage problems initially and was able to go 4 hours from the beginning. However that changed a few months ago and I began to experience really bad leakage. With the help of the members on this web site I identified coffee and dairy products as 75% of my problems. I have had a Mitroffanof procedure -thats what they call it in the UK- similar to the Indiana Pouch.

I haven't been able to stretch my bladder as much as my consultant wants me to - I usually empty 300-400 and have had at least one 700. I can't stretch mine because of the leakage at around 400.

I can't help with your specific issues but I'm sure you will get some help from this site.

Good luck - and keep talking to people here.

BJ

Surgery was 13 hours,13 days in Hospital.Fistula opened up about 2 months after it healed and took until Jan. this year to heal again.My stoma nurse said I may not of been able to stretch out my bladder because of the fistula.I try to go at least 3 hours before cathing to help stretch out bladder.

Sorry it was 2006 not 2007

Hi XCV......gee you're only like 11 days out of surgery right...i can't speak for other pouch owners but i was still connected to the external bag at that point as the concensus among my doctors was to let the bladder heal a little longer. I actually didn't start cathing until 3 weeks out. And no there should be no nerves at the opening of the stoma or into the bladder...bladder has plenty of them though.....You might switch to a softer type catheter like a Mentor clear l4 French..its clear and much softer than ones they give you in the hospital.
Its not unusual to leak in the beginning and to produce tons of mucus...i had to use the saline for a year pretty steadily...started off every other time and gradually down to once a week...now 4 yrs out i hardly do it at all.
You'll find certain foods will maybe irritate the pouch more than others..keep track and see if you see a pattern.
Has the fistula been fixed? What the status there?
How often are you cathing and are you measuring amounts? pat