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Indiana pouch average timeframe for full expansion

2 years 6 months ago - 2 years 6 months ago #54843 by Cynthia
Welcome fellow kangaroo! Indiana Chicago University Hospital ,06. One revision but beleave it or not mine was two tight. Mine also will leak but it is because of a few reasons and I have learned ways to deal, so do not plan to have another revision. I will share what I do but please check it out with your doctor before trying. By the way four hundred at four hours was the goal I was given for normal. Not all people can do five or six hours and for some three is the norm. If you want to stretch it I would go back to basics. Retrain start at say two hours and add a half hour per week. Also try irrigating as you have been instructed to every day or two for a while to see if that helps. Some people find that certain foods can make the Pouch irritable, remember it is made of intestine so it may not be as crazy as it sounds. I know a lady that leaks like a sieve every time she eats something with MSG in it. You might try keeping a food diary to see if there is any correlation to certain foods or additives. Also I have found that I can drink say 10oz if I drink it quick I may have to cath in two or two and a half but sipping will be three or four. I have found that watches with an alarm setting and IAlexa dots in all the rooms I spend the most time in make life much easier for me. It sounds like a lot of trouble but it is second nature after all this time.

Hope this helps and don’t be a stranger.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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2 years 6 months ago #54841 by mammoth3128
Hello, 1 year post op from indiana pouch at UCLA. 2 revisions due to leakage. Non-invasive but did not respond to 15 bcg and 3 TURBTs procedures. Very active skiing quite a lot, tennis, daily gym. It has been almost 3 months since my 2nd revision. All is well, clean CTs. However if I do not cathetrize every 3-4 hours I will experience leakage. measuring I am usually between 3-400 cc. Have been using a great product from Austin Medical. Stoma cover sg-3
Wondering after one year can I expect my bladder to expand further? I am 6', 185 lbs.
thank you

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