Indiana Pouch Leakage

9 years 5 months ago #47219 by FlamingoKid
Replied by FlamingoKid on topic Indiana Pouch Leakage
My RC was in June 2013, I had some complications and had a ileostomy reversal & Abdominal wall reconstruction in May of 2014 I find I must cath every two and a to three hour in the daytime to stay dry. I can go 3 to sometimes 4 hours at night.

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9 years 5 months ago #47217 by TCGirl
Replied by TCGirl on topic Indiana Pouch Leakage
When was your surgery, and how long are you going between cathing?

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9 years 5 months ago #47192 by FlamingoKid
Replied by FlamingoKid on topic Indiana Pouch Leakage
Went to see my Uro surgeon yesterday , He says my scans are clear, see him in six months and if all is well he will see me a year from then.
I asked him about the leakage and he said to keep irrigating twice a day and to he prescribed a anti spasmodic drug that is too expensive for me { My insurance only pays $20.00 towards it} so I will keep irrigating and hopefully the daytime leaking will subside with more time. I guess I have to learn how to operate my new bladder better.

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9 years 5 months ago #47182 by Cynthia
Replied by Cynthia on topic Indiana Pouch Leakage
How long and when you irrigate is a question for your doctor. As time goes on you will find that you produce less mucus. I went to every three days about three or four years out and now do it when I think of it to be honest. On the other hand if I am having leakage I up the flushing until it stops. My Uro who is one of the top guys claims that by this time the mucus production should have stopped. The last time I saw him I told him I still flush to break up my imaginary mucus. Keep me updated on what your Uro has to say I will be interested in hearing what he has to say.

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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9 years 5 months ago #47148 by FlamingoKid
Replied by FlamingoKid on topic Indiana Pouch Leakage
Thank you for replying. How long did you have to irrigate once a day? My RC was in 6/2013 but I had had the ileostomy reversed and hernia repair in 5/2014. I think since I had the ileostomy reversed the pouch has to be trained all over again . I have an appointment next week with my surgeon so I will ask him also but it is good to learn from others with similar experiences.

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9 years 5 months ago #47145 by Cynthia
Replied by Cynthia on topic Indiana Pouch Leakage
I have had an Indiana since 2006 so hopefully I can share some of my experience that might help. But please keep in mind that you should talk to your Dr. about any ideas you get from my experiences as I am not a medical professional.
I was told after my RC that an Indiana pouch needed to be "trained". This consisted of what I would call an expanding schedule. I started with my trusty little timer set for the first week for every two hours. The next week was two and a half adding a half hour a week up to four hours.

Some people find that what they eat can affect leakage. One lady I know can not eat Chinese food because of the MSG or some other component. Watermelon gets me every time I think it is a natural diuretic and it is just too much too soon.
You might like to keep a food diary and see if you can match up bad leak days with a certain food.

You might like to talk to your doctor about irrigating your pouch, I did it once a day at first. When your pouch is new and since it is made of intestine and it likes to make mucus as intestine do normally. You would need to get your own instruction but I was taught to use an irrigation syringe and 50cc of sterile normal saline. This helps break up stagnant mucus and allow it to drain more easily and is quick and painless. You would have to get instructions and a prescription for the saline and irrigation syringe. I now only flush about once a week as mucus production goes down with time.

A bladder infection can cause leakage if you have not you might have that checked.

Even when everything is going well for a long time you can get what is termed pouchitis this is when for some reason the pouch or sphincter gets irritated and will seem to at time spasm causing leakage. This will sometimes right it self with time but I find that again flushing usually helps.
Last but not least is talk to your doctor he may have some suggestions of the leakage may be a side effect of something you have not thought of.

When my pouch was new it was so tight that on one occasion it took a trip to the ER and a few hours to be able to catheterize. A revision was done during a later surgery for a blocked ureter. The outcome is that now I have to be very careful or I will have leakage. I know by measuring how much my pouch holds when full around 400cc. So I keep an eye on my intake and know that the more I drink the more often I have to catheterize. Easy math, what goes in has to come out in equal measure and probably sooner than later. I was told that I would be able to go four or five hours, the truth of the matter is it depends on how much I drink. I am a camel and always have a tea or water next to me so there are days I cath ever two or two and a half hours.

I hope this helps and if you have questions just fire away.

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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