Indiana pouch leakage

6 years 1 month ago #53953 by Nk1804bk
Replied by Nk1804bk on topic Indiana pouch leakage
Hi Cynthia,
Thank you so much for your helpful reply to my leakage problem. Sorry to be so long in replying, but we have been traveling and no internet. Something amazing has happened and I have no idea of why, but I haven't leaked since I heard from you!! Maybe I scared my body with the threat of a bag! Lol. I realized during all this that it isn't the valve as I was afraid of. I had a CT scan and had to drink 32 oz of water. By the time I got home and got to the bathroom I actually drained just under 1000cc. and had not one drop of leaking. I was shocked. I have discovered that if there is too much mucus there is a problem so I have been drinking more water - not less as I had been inclined to do. It works just the opposite of what one might think. I had planned to begin irrigating again but there has been no need. By the way, I was using cut up puppy pee pads for protection, but have recently started using ABD pads which last the whole day and very comfortable.
Again my many thanks for your quick response. We belong to a very special climb
Best regards,

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6 years 1 month ago - 6 years 1 month ago #53820 by Cynthia
Replied by Cynthia on topic Indiana pouch leakage
Sorry you are having problems. My pouch is nine and I also have leakage at times. Remember all that I tell you is for you to take back to your doctor, trust them before a crazy lady on the internet. This all comes from my personal and others shared experience. It can be caused by one of a few things.

Pouchitous - This is an irritation of the pouch itself.

This can be caused by several different things. Diet can be the cause if something bothers the intestine it will often bother the pouch. I know one woman that every time she had Chinese food she would start leaking. Trial and error told her that she leaked everytime she had something with MSG.

I personally find that if I have intestinal problems I have pouch problems. Once they resolve my leaking resolves.

Over abundance of mucus. This can also be linked to food. Trial and error is the best thing here a food diary may help pinpoint.

Having said all of that if you have no idea what is causing it and that can be the case here is what I have found helps me. I go back to basic training, by that I mean get out the alarm clock and keep to a schedule. If I notice that I will leak after three hours I start there if it has no periodicity I start at 2 hours day time three night. Add an hour a week until you reach normal cathing for me that is every 4 hours.
And I irrigate with 50cc of normal saline using an 60ml irrigation syringe, the tip fits perfectly into the end of the catheter. I was taught to draw back on the syringe to a get back flow. Again before trying this talk to your doctor also you would need a prescription for the normal saline the 60ml sterile irrigation syringes can be perchused on Amazon if need be.

As for the pad I use when leaking. I use the Tena male gaurds, they are in a V shape. My stoma is in my navel so I am able to use them wearing what I call granny panties, the correct term is high waisted brief. I also have a really bad adhesive allergy so I understand where you are with that. If that would not work I think if you had a close fitting belly band made and used a heavy duty urine pad with adhesive on the fabric side might work for you.

Good luck and let me know what you figure out.

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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6 years 1 month ago #53814 by sara.anne
Replied by sara.anne on topic Indiana pouch leakage
I moved your post here, to the topic "Muscle Invasive Bladder Cancer" where it is more likely to be seen by
those who can answer your questions. "Chit Chat" is for non-bladder cancer related stuff!

I am not in your position, but I know that someone with an Indiana will try to answer..

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 years 1 month ago #53813 by Nk1804bk
Indiana pouch leakage was created by Nk1804bk
After 11 years with an Indiana Pouch I am having a terrible problem. Every so often I will have an explosion of urine, all over my clothes or through to my sheets. It only happens occasionally. I tried to wear a bag but two problems with them. 1) I'm highly allergic to adhesive and 2) the location of my stoma is just below my waist on the side. With the bag on it hurts to sit since the wafer digs into my ribs and I can't bend over to tie my shoes or pick something up from the floor. I actually ended up with a bruise from it. I do wear an ABD pad but that doesn't work as there is about 30cc's to absorb. Too much. It happens day and night, but I can go 2or 3 days with no leaking, then suddenly there it is. It's not that there is too much urine for the pouch to hold as I cath every 3 hours and I know my capacity is easily 500cc's. Sometimes it happens an hour or two after cathing. Could it be possible that an antispasmodic pill will work? I'm desperate.

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