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Indiana Pouch

lilbit37
0 Recommendations

Hello, I had bladder cancer at age 2 and underwent a procedure in 1980 where my ureters were re-routed into my colon. It is now known that this causes cancer. I had some pre-cancerous polyps and it was suggested that I have surgery to remove these from the colon. I am getting ready to undergo surgery and I will have an Indiana Pouch. Can anyone tell me what surgery is like, after surgery, quality of life with the pouch and self catheterization? I am very scared and apprehensive about this surgery.

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Cancer Surgery Cipro Hysterectomy Neobladder Fever Bladder cancer

28 replies

15yrsurvivor

AGE 2?! I have never heard of someone that young!

i cannot help with your questions, but just wanted to express my dismay at what I first thought had to be a typo.

There are many people who can help you with these issues and I'm sure you will be hearing from them. Welcome to the website!

lilbit37

I was told this was very rare and I wasn't expected to survive but I'm here! I am now 30 years old. If I do not have the ureters removed I will get cancer.

sunshine604

Hi -
Glad to see you here. You'll get replies about the pouch when the group wakes up tomorrow. I can understand being scared about the surgery as it's a major step, but many of us have been through it, and in your case it may prevent cancer, instead of getting rid of it.
When is your surgery planned for?
Eileen

Kyle-MO

Welcome lilbit !
I don't have a diversion, but you will get many good responses from the people who do.
Best wishes for your upcoming surgery to be uneventful, and also for a rapid recovery.
Take care,
Kyle

Karego

Lilbit37, Welcome to BCAN's online community. You are definitely a new discussion for us. Your circumstances will have many avenues we aren't aware of or able to give our experiences to.
I am an Indiana pouch recipient since Jan '04.
As you are probably aware, the pouch is constructed from colon and intestinal tissue.
An ileal conduit uses a small portion of the upper intestine to connect the ureter to a stoma, allowing drainage to a bag outside of your body.
I don't understand how your system has dealt with your diversion of the ureters into your colon for all these years.
I am assuming you had your bladder removed when you were 2.
I'm sure everyone will suggest that you make sure you are working with the best, most experienced surgeons/urologists in determining what diversion will work the best for you.
I confess, I am puzzled why you apparently have a recommendation for an Indiana Pouch instead of an ileal conduit as your remedy. Since the colon and intestine seem to be your issue, as to why to make the change now, I'm not sure your colon tissue would be appropriate for an Indiana Pouch at this time. I would be asking this question of the surgeons.
There are many posts you can search here that discuss how we live with our IP's. All of us would be happy to talk to you individually if you want.
You didn't say when your surgery is scheduled. If it is imminent, there's not much time to learn.
Essentially, the surgery is several hours long, recovery is slow because the body must recover from trauma to the digestive system as well as accomodate a new urinary system.
I will send you my contact info by message, should you want to speak to me.
Karego

balihigh

Lilbit,
You have quite a story to tell and are already an inspiration to me. I can't imagine anyone having bladder cancer at age 2.

I fully agree with Karego that you should be at a hospital and have a doctor that does bladder diversion surgery on a regular basis-like several times a week. This is a very major operation and surgeons who only do it once or twice a month often aren't as expertise at it as the ones who specialize in it. If you are having problems with your colon, it would seem that the illeal conduit, which I have, would be better for you since they must use so much intestines in the other diversions.

I do wish you the very best.
Hugs,
Nancy

lsh

I see you have already heard from one of the Indiana pouch experts in our group...good advice. Let us know when your surgery is so we can cheer you on as you recover.

Lynda

jj803

Hi Lilbit,

I assume that your earlier surgery just implanted the ureters into the colon so that the urine drains into the colon and is eliminated with feces. My understanding is that was a procedure used in the past as an alternative to an ileal conduit. I believe that Indiana pouches may be constructed of distal ileum (small intestine) so I trust that you would be a candidate for that diversion or either of the other two possibilities (neobladder or ileal conduit). All three of these diversions are described in the booklet "bladder cancer basics for the newly diagnosed" which can be downloaded from the bcan.org home page ( I think this line will also get you to the appropriate page http://www.bcan.org/bladder-cancer-basics-for-the-newly-diagnosed-–-availab le-now/). There is also a fairly good description of the diversions available at a website directed toward information for those with ostomies (http://www.uoaa.org/ostomy_info/). I concur that this new diversion should be performed by someone experienced with whichever diversion is right for you. Best wishes,

JJ

phallon

I have had my Indiana Pouch, since April 08. When I was trying to decided which way to go, this site gave me so much info that it became fairly easy for me to decide to go with the IP. I agree with Krago, that you should ask many questions. I had a really great Doctor out of Virginia (Norfolk General) He has done quite a few bladder removals. I've had several doctors see me since & they have all said they could not have done what he did.(I've since moved from the Va. area.) I'm very happy with mine. If you would like to talk, please just get bck with me & I would be happy to speak to you.

Phallon

lilbit37

My surgery is planned for December 18th at the moment. I will have a confirmation on this date on Monday. I'm just ready to get it over with. Thank you for your help!

lilbit37

The colon is perfectly fine now. There was no dysplasia. I had a precancerous polyp that was removed and my colon was biopsied by my colorectal surgeron which was why they opted to do the indiana pouch. I'm happy with the decision as I am very active and would not be able to function daily with a bag. I forgot to mention I am a first grade teacher and stay on my toes all day!

lilbit37

what is an illeal conduit exactly?

15yrsurvivor

If you look on the right hand side of the top of the page, you will see a heading" Related Links From BCAN."
Look for the glossary and click on it. Ileal conduit is defined there.

i am still blown away at your history! You were too young to even be exposed to chemicals, workplace toxins, smoking or any suspected contributors to bladder cancer. You are an amazing person!

balihigh

The illeal conduit is the bag. I agree with you that the Indiana Pouch would probably be best since you are so young but I was thinking of the health aspect of it.

I have the bag and am very active. I hike, garden, swim, travel, can't think of anything I can't do. It does not limit your activities but the self image thing is what some people struggle with. I am older and it doesn't bother me at all. There have been many posts on this site comparing the 3 diversions. I am sure you are NOT a candidate for neobladder since it uses the natural muscles and these are not developed for you since your urine has been diverted through the colon.

Hugs,
Nancy

phallon

Will be praying for you on Dec.18th.

Phallon

silgal

Lilbit, welcoming you to the site! I am a teacher also and am worried about having the bag! (i don't yet) I teach at the college level. Anyway, I'm thinking of you and wish you well.
michelle

lilbit37

Right now surgery is scheduled for December 18th. I was told I would be in the hospital from 5-14 days. So I'd be in during Christmas and possible New Years :(

AlyceJ

I have had the Indiana Pouch since Dec.'07 and am very pleased with it. I had my uterous, ovaries, cervix, appendix, 14 Lymph Glands (one of which was cancerous) and 20% of my colon removed at the same time (to make the IP) Certainly recovery is no fun dealing with all the tubes that are eventually taken out but I assum that is true also w/ill.cond. With experience it becomes very easy to catherize through the stoma in the abdomen. I am so glad I don't have a Bag! I do everything I did before surgery including working out at the gym 3x a week and feel fine. I am 73 yrs. old!

lilbit37

AlyceJ,
How long was your recovery?? Thanks for your response!

AlyceJ

It was slower than I expected. They didn't take the last tube out for 4 weeks. I started going out right after that but was still pretty weak. I lived on Ensure and smoothies for several weeks, just couldn't make myself eat. However at 9 weeks we went on a driving trip to Florida, visited friends, and were gone for 2 weeks so I guess I was completely recovered then. Catherizing at McDonald's is a challenge-trying not to touch anything-- but manageable! Medicare will pay for up to 4 catheters a day. A doctor has to write a prescription for them. Liberator Medical is a good source.

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Related links from BCAN

Researchers are looking for bladder cancer survivors to complete a telephone survey. Click here for more information.

Newly diagnosed
Information for those newly diagnosed with bladder cancer from BCAN.

Bladder Cancer Basics for the Newly Diagnosed
Download or order a copy of BCAN's patient handbook "Bladder Cancer Basics for the Newly Diagnosed" free of charge.

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Information about women and bladder cancer from BCAN.

BCAN's glossary (PDF)

BCAN's November Patient Forum in San Francisco
"Understanding Bladder Cancer: A BCAN Patient Forum"
San Francisco, CA
Saturday, November 7, 2009
9:30 am - 2:30 pm
The forum and lunch are free, but pre-registration is required at www.bcan.org or 888-901-BCAN

Presentations from BCAN's May 2009 Patient Forum
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