Indiana Pouch

Hello Pitt,

This is a difficult time for you. I remember it well. I too have an Indiana pouch. I was 58 at the time of my surgery.

For pain management I had the epidural. Its the only way to go! The hardest part of the recovery and adjustment period was the sleep deprivation when I started cathing. It was just horrible. But it gets better.

I'm 2 years out from my surgery and I have to get up once during the night now to cath. I have become very efficient at it...but it came with practice. We all find our own way.

I don't have to wear diapers or keep any pads on my bed at night. The Indiana is wonderful that way.

Is life different. Oh yes - in so many ways. Once diagnosed with cancer, well - everything changes. But the cathing is the least of it. Pat pointed out some advantages - always hated sitting on those dirty seats no matter how many liners I put on!

I have traveled and cathed on planes. Not a small feat i can say. While the procedure is not sterile it should be clean so that alone presents some challenges. I am still at the reluctant stage for traveling abroad . Not quite there yet. But traveling domestically offers the same challenges of peeing the old fashion way. Just have to find a clean bathroom.

Your life will be different. But you WILL adjust. The important word here is 'life'. How lucky we are that they can do this surgery and give us our lives back.

Take it one step at a time. Your new life will once again be as rich as before. You may even notice that things will look just a tad better then before.

Let us know how we can help.

Best,
Gracie

Not familiar with that facility.....but to answer your questions.
the nerve block is the way to go after this surgery as the first couple of days are the worst and with the block you should be just fine. I did not have that option and was on a morphine pump which didn't work....but by day 3 it was all bearable. Its not a walk in the park but you do get better each day. They will have you get up and walk pretty quickly..you won't want to..but do it anyway. Your stomach muscles feel like a mack truck ran over them but like i said it gets better. Most important is to get that gastrointestinal tract working so you can get out of there. New trick they have found is to chew gum..who knew?
You will go home with tubes in you but hopefully a stoma nurse will give you instructions on how to take care of them until removal.
Once everything is out of you and you're on your own it will take a while to train the new pouch. And a bit of advise..get more than one type of catheter..they'll send you home with some but look into a second type just in case the one decides it doesn't want to cooperate. That happened to me just once. Any of the catheter sites will gladly give you a free supply..Hollister, Kendal Coloplast.....you'll probably use a 14"french. You'll have a lot of mucus which you will irrigate quite a bit in the beginning(i no longer have to irrigate..it thins out eventually) ..they'll teach you how..hopefully.
For 1 week..you empty at every 2hrs night and day...i know..next week 3hrs,,,next week 4hrs...and then you begin experimenting with holding it a bit longer...watching fluids at night to go longer. This is the sleep deprivation stage.
BUT...now it all gets really better. My scars are not visable and my stomach is flat. You cannot tell the pouch is there..no bulging or anything of that sort. It is not cumbersome at all. It just takes some time and patience.
I had a top surgeon who did not take all of the vaginal wall and therefore my canal is not shortened...if it should happen there are stretching exercises you can do. I've not had that problem.
Traveling..no problem...you'll become a pro with that catheter in no time and really it takes me no longer to empty than it does to sit on the john and pee..so no big deal..plus no leaking like my girlfriends who now wear a pad as whenever they laugh or sneeze ..oops.....you won't have to worry about that!!
Honestly after 8 plus years its just a nobrainer for me. I think my bladder is in a great place...plus i can pee standing up like the big boys do!! You don't have to worry about crummy restrooms or any of that. You will learn to love it..the first 4 weeks you will be hating it.
I hope your surgeon has done lots and lots of Indiana's?? Did you ask?
Just ask away at any time..... pat

Pat,
I'm having it done at Shadyside Hospital in Pittsburgh. It's connected to the Hillman Cancer Center. A few of my questions:
1) will my life ever resemble what it once was; 2) how bad is the pain afterwards. For pain, the surgeon said I will have a pain block, will that be enough? 3) How cumbersome does the Indiana pouch become? My husband and I have always traveled, will that be curtailed? 4) if this isn't too personal, is there sex after an RC? I've read since they will be removing the roof of the vagina sex is extremely difficult. I touched on this subject with the surgeon before I did all my reading. He said yes, you can engage in sex but what I've read leads me to believe that may not be the case.

If there's anything you can share, I would greatly appreciate it.
Linda

Hi PittProf...where are you having this done? A lot depends on the surgeon and his/her expertise.
I've had an Indiana Pouch for over 8 l/2 yrs now and for me an excellent choice. It takes a bit of training but within 4 weeks after having all tubes removed you will be able to have it trained to catherize every 4hrs and up to 6 hrs and eventually through the night.
I don't know what you do know and what you don't know about the surgery. Enlighten me.....as i would hope your surgeon has enlightened you??
Every institution is a bit different on how they handle pain management, the number of tubes you will have after surgery. This can even vary from doctor to doctor. Also placement of the stoma can vary. I have a navel stoma,,my choice as its easy to get to and does not want to heal in that location..its also the trickiest to do.
Though i know you are not Medicare age..they dictate pretty much what is allowed and they now allow 200 reusuable catheters a month.....other insurance companies have followed suit. You just need a note from your surgeon if they won't comply. I have never reused a catheter and i have never had a uti. There's no reason to reuse anymore so don't.
So give me some more questions that you may not be clear on whether it be the surgery, recovery or whatever and i'll do my best to help.........Pat

Hello, I'm new to this site. I'm having an RC on Friday, July 2, with an Indiana Pouch. Is there anyone who has experienced this? Stupid question, right? Although I've talked to my surgeon, I would really like to hear from someone who has gone through this. I'm a 59 year old woman and terrified. I hope there's someone who will share with me what I can expect. Thanks.