New member

Dear InTransition -

Glad you got to view my website - Pat was my mentor and I went for an Indy for the same reasons she did. I was so very impressed by her research efforts...she actually flew to the primary medical centers before making her selection...and I also so much admire her because of her determination to get the diversion she wanted (the Indy) in spite of the fact that all the doctors were trying to sell her on the neo...even her selected surgeon. Now that takes alot of guts and determination. And I'm so very glad she did because she inspired me to get the Indy.

And I have done so well with the Indy over the last two years, I was then inspired to put together my website in the hopes that it might help others with their decision making process. It ain't easy...wading through all the information & details, checking up on the doctor's and medical staff, keeping notes, records...but so very well worth it. Quality of life is so important. But as Mike said, we never know for certain what we will end up with until the doctor actually gets a good inside view.

Yes, please do PM me or send me a website email and I will try to respond to any questions you might have in reference to my experience...I need to go back to work on that site and probably add details I might have missed.

Bill - Thanks for listing my website again - I don't find the time to get on the forum every day but this wonderful group of warriors and caregivers is always on my mind.

Bill:

Thanks for the link! I read through the entire site; it was very helpful especially since it covers the two diversions I am most interested in. Having pictures of Rick's external bag apparatus was very informative. One begins to imagine they can do this!

Thanks to everyone for your quick show of support.

Pat: Without a doubt you will be an important resource over the next few months if you are willing , especially if I end up with an Indiana pouch. Your responses on this website are so content-rich!

Sorry you had to meet us under these circumstances. While you are in the research-mode, go to:

www.bladdercancerwarrior.com and feel free to e-mail the site owner with any questions, as she is very willing to help!

Our Prayers are with you, all the Best!

Hi Intransition.......been there thats for sure. Glad you found this site.
Mike pretty well covered it. I'm a female with an Indiana Pouch and had the good fortune to also be with an excellent facility and one of the top surgeons in the country. I find it to be a very trainable option...takes a while and a little sleep deprivation but eventually it behaves and to the point that you can sleep through the night without having to get up. We all have our reasons as to why our choices....mine was simply that i couldn't stand the idea of having to cath where i could not see without mirrors or being in a dirty facility. My stoma is at my naval which gives me easy access and doesn't seem to want to heal over in that spot. I'm 6 l/2 plus years out. I've never had a UTI which seems to be more prevalent with neobladders. The docs will try a hard sell on the neo for you as thats what they're used to doing on males which is about 60% of their patients. The Indiana a bit more complicated to do so you want to make sure you have the surgeon who does know how to do these should that be your decision.
Good luck and will be glad to answer any questions.
Pat

Mike: From the work I have done, I have come to the same preliminary conclusions as you did. If I was a guy, I'd give the neobladder a go, but as a woman I am feeling less fond of that option as each day goes by - even though my surgeon is an expert in the neobladder.

I spent a lot of time getting used to the idea of an external bag just in case that is what I woke up from surgery with. Now I am trying to sort out my feelings about the Indiana pouch and I am thinking that is the way I would like to go.

I have another CT scan in a couple of days and meet with my surgeon early next week. I want to be prepared for that discussion!

Thanks so much for your thorough, helpful posts throughout the forum. Your info and links have really helped me.