5 weeks post radical cystectomy

8 years 2 weeks ago #49922 by Plk
Replied by Plk on topic 5 weeks post radical cystectomy
Thank you, Cynthia. you information was very helpful. i am working with the preferred provider from my insurance company, but they have been so slow. i am using the 16FR straight catheter, but I will explore the soft one that you suggest. I will try your other suggestions as well.

George, that was such a kind note, it really made me feel good.

This site is a godsend for all of us!



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8 years 2 weeks ago #49921 by Cynthia
Replied by Cynthia on topic 5 weeks post radical cystectomy
Hi Pik,

Welcome to the pouch side! I had a time of it when I first started buying catheter supplies. I called around and only one of my local medical supply companies excepted my insurance so I went with them. They were a lot of help as they gave me samples of anything they had they thought would work and I found one I liked. This worked until my insurance no longer would pay the medical supply as a 'preferred' provider. They sent me to a company who is their preferred supplier that is online as is many this one is Byram medical supply and I know there are others. Now the interesting thing is that the catheters were a lot more expensive through them than my local place. I order them once every three months and get a 90 day supply other than storage this has worked well and there is not a lot of co pay. Call your insurance company and ask if they have preferred providers. I use Aprogee 14Fr 16in straight/soft 1061 I like them as they are more pliable than many disposable catheters maybe other companies make a soft cath if you can not find these but the soft is important to me as they rigid ones are much harder to manage. Now you may be using a 12Fr or a 16Fr but this catheter is available in different sizes.

As for the leakage I would imagine you are "flushing" your pouch as directed. If they have not told you to do this leakage may be caused by mucus build up and flushing helps break that up. I was instructed to flush once a day for the first months using 50cc of Normal Saline. Then less frequently as time went on now after all these years I do it once a week or so or if I have leakage. Do as your doctors tell you of course.

I also take a sanitary pad with the tape on the back and place it in my undies I have some high waist-ed ones that work well for this and just place it in the best place to catch any leaks if they happen.

I hope this helps and I am sorry I have not answered sooner but have been busy with a lot of stuff this last week. But if you have any more questions let me know I will keep an eye 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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8 years 2 weeks ago #49920 by GKLINE
Replied by GKLINE on topic 5 weeks post radical cystectomy
While I am no help in this dept. I wanted to congratulate you on your recovery and good attitude. You are now a true survivor and are on your way back to normal.
I can tell that you are doing well because you have no other complaints other than the leaking issue.

Best of luck to you. We are thinking of You


Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
New Man! [/size]

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8 years 2 weeks ago #49914 by Plk
5 weeks post radical cystectomy was created by Plk
I am 5 weeks post radical cystectomy with an Indiana pouch. i know I made the right decision and I ha gotten so much support from the people in this group, I am hoping you can help me now.

- I have had so much difficulty getting the right supplies. My doc and his nurse made it sound so easy, but until I found someone that was covered by my insurance was a nightmare and now hey keep sending me the wrong thing. Any suggestions of a good provider? Or how to deal with these providers more effectively?

- though I have been self-catheterize ping every 2 to 2.5 hours, I still find myself leaking periodically. i have put a bandaid over the stoma which helps, but should I be doing anything differently?

tHanks in advance for anysuggestions, or advice.



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