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When no one understands

1 year 5 months ago #53622 by vamps
Hi Cynthia
I'm sorry I didn't explain--My name is Kris and yes I do have an Indiana pouch..I haven't even tried to use the catheters. My pouch leaks & I'm on water pills for very bad swelling in both legs. At the time I had the surgery to have my bladder removed I had no idea I was going to blow up like a balloon. I do get off the water pills Now, but only like for a week. The mucus is terrible & I get all plugged up threw the foley Catheter. I don't get the positive feedback at the Urology Clinic which I need. There are no support groups for Indiana pouchers in my area. Does the mucus go away or get better?? Does the leaking stop after the first week you start the cathing process? I get very sad.
I want to thank Jack R.for the very nice post. I also have MS. I am no stranger to cathing which I had to do for 17 years before the BC with a "Real" bladder. The signals from my brain to the bladder just didn't click right. I still am good to go with the MS so I am grateful. You would think I could Cath the pouch without a problem??? Go Figure. Thanks for this group...Kris

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1 year 5 months ago #53618 by Cynthia
Hi welcome to our forum. I have an Indiana and am confused by your post. I use a catheter five or six times a day to drain my pouch that is the idea of an Indiana pouch. The only time I have used a foley was if I was going to be under for surgery. I would be happy to help if possible if I understood your situation clearer.

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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1 year 5 months ago - 1 year 5 months ago #53617 by Jack R
Vamps,

Congrats on 8 months without new issues. Many of us here have continuous concern about the effect of our bladder cancer on our families.

As I read your post, your family is glad that you are in the picture and that the BC is not the focus of daily life. That they are both relieved and happy for you is normal and obvious.

Body image issues can be a real problem sometimes - been there - 10 months in hospital, two years in wheel chair, have learned 3 times how to walk - with a unique gait and a walker or other support. That was 18 years before BC. My family is happy to have me here.

Can you write out a list of EVERY issue and item that you would like addressed - leakage and being able to cath the pouch seem like a good start. Take the list to your care team and get every issue addressed. Might take a little while to address everything. A complete list helps them provides the best help and keep them focused. Expect that they will have some instructions for you, the patient, to follow. BUT, it is the care team's job to make it work for YOU.

While it might seem difficult, consider sharing with your family once you have made your list - see if they have any ideas or thoughts to add. I have found that including my family in my continuing journey has been a help to everyone. We are a family team dealing with my ambulation, and now my BC and creating our new normal.

Most of all, figure out what works for YOU !

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 5 months ago #53616 by vamps
DX'd 4 years ago--had 9 cancer tumors bladder removed, among other things--7 months in the hospital & now I have gone 8 months without major problems like blood infections "Septic" & Indiana pouch infections. But have issues with Indiana pouch--the leaking which seems like it will never go away. I still have a Foley catheter & haven't gone to the next step to Cath the pouch. Maybe its a mental block, because it leaks. Family- just tells me to get on with living but the bag is such an eye sore. Any advise would help?

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