Questions about Indy Pouch in women

Thanks Pat! I guesss it's time to suck it up and get it done. I was starting to wonder if the bag at night was counterproductive and you just confirmed it for me.

Lynda

Linda,
Unfortunately if you don't train it it will continue to play tricks on you. Sleep deprivation is for a short while only while you train it...hang in there and don't let it run your life...you take charge.
For one week go every 2 hours (ok you're already there), second week go every 3 hrs, third week try for 4 hrs...then stop your fluids around dinner time and get that Indiana to start going thru the night with you. It doesn't happen right away. I got it up to 6 hrs in about 4 months and by a year i was sleeping 8 to 9 hrs without leakage or interuption of sleep. Using a Foley is just asking for a UTI...it will happen eventually. Just be patient...cat nap during the day if you can...and stick with the program. Once it decides it actually likes being a bladder it will behave with a few exceptions...mine does not like Barium from CT scans one bit..dairy makes more mucus, and now that i'm on blood thinner (whoopee) it wants to get it out of there as its excreted by the kidneys so i do have to get up at about 6 hrs at night but still behaving during the day.
Hang in there..you'll get it done.
pat

Hi Everyone! I am new to this site. I was Dx with bladder cancer May 24, 2010 (my birthday), and had surgery on July 15, 2010 with a complete bladder removal with Indiana pouch. At first I was disappointed to not get a neo-bladder, but the urethra was compromised by cancer. Now I'm glad to have the Indy and cathing takes me about 5 minutes.

I have lite leaking most days and use a foley cath. and bag at night. You do not want to deal with me sleep deprived - I halucinate.) I did have one night(since surgery) that I did not use a bag and got up twice and seemed to do OK, but the next night was a disaster. During the day I can go from 2-4 hours between bathroom breaks. My dr. never gave me any instructions on training so I've learned a lot from "lurking" on sites like this one. I have also never met anyone (face to face) that has an Indy.

I wear all the same clothes as before, and I have lost a little weight so that makes them looser and more comfortable. I also use a pad and micropore(3M)tape over my stoma (at navel).

I have heard great things about Cleveland Clinic and it was my second choice for care (Grand Rapids MI is about 6 hrs. away). I was very lucky to find a top dr. in GR Dr. Brian Lane (great surgeon) and I can't really fault him for not knowing about training since he doesn't have one.

Sandie - I think that the Indy pouch is your best bet. Talk to your Dr. about the success rate for neo-bladder is women (have heard it's not too successful, but that doesn't mean it won't work for you) Also please forgive me for Hijacking your post, but if anyone has any advice for me on getting thru the night without the bag, I'd be very grateful.

There are other sites on the web for bladder cancer, but I think this one is the best.

Thank you so much for your responses! You have no idea how helpful this is to me (and others, too, who read it).

Erie is 90 miles east of Cleveland so it takes me 1 hr 45 min to get to Cleveland Clinic. I feel very comfortable about having the surgery there. I've had 3 biopsies done there so I'm familiar with it. Wish I didn't need this done at all but it's time.

I'm trying to think where Erie is?
Anyway i've had mine for 8 yrs and at first you must make friends with it and train it.....its a little confused as it still has the memory of a bowel but it will come around. It will produce a lot of mucus in the first 6 months and some of that is related to certain foods you eat.....mine was dairy...it might be different for you. But it takes about 4 weeks of sleep deprivation to get it to 4hrs before emptying...and gradually you train it to go longer in the evening..5 to 6 and i can now go 8 hrs at night. I do not drink much at night though either. Drink what you've always drunk...the stoma nurses will try to tell you to drink 8 8oz of water plus......much more than i had ever drunk in my life...doc said.."stop doing that"..drink when you're thirsty. Problem solved.
I do not leak but i wear a bandaid over my stoma now. In the beginning i used a gauze pad and paper tape...i'm allergic to latex. it mostly spit mucus.
I wear the same clothes i always have. I have a navel stoma and most of my pants come below the stoma. Cathing takes about 4 minutes maybe but i'm a pro...in and out..a little swishing to make sure i've hit all the pockets..wipe off the stoma and pat dry it and put on a bandaid. I also never reuse catheters. And i've never had a UTI. Campbell will write you a script for 200 caths, surgi-lube and sterile saline solution.
It can act up once in a while...it does not like barium one bit..so after a CT scan it plays games with me but doesn't last very long...couple of days.
Much better than a neo that you have to empty every 2 l/2 hrs or so and talk about leakage with a female?????? If you're going to leak much better for it to look like you spilled something on your shirt than wet your pants.
Other good places to go for the Indiana are U. of Penn and Dr. Malkowitz and Indiana University..Dr. Koch or Dr. Bihrle.
pat

Wow, Sandie, that is a lot of questions. I understand because I got my Indie pouch 16 years ago. I can't answer how it will be for you, but I can share some answers based on my own experience.

1. I very rarely have any leaking. If I am concerned it may happen...I simply wear half of a Carefree panty liner in my panties.

2. Once you get the bladder trained, the sleeping issue isn't so much of a problem. Part of that will be determined on how much you drink in the evenings. Usually, where I am now, I only get up once during the night.

3. How long it takes depends on how full the bladder is, and the size of the catheter. It does take a bit longer, but not that much.

4. You may wish to check with the doctor you are seeing now for a recommendation. I am lucky, because there are doctor's here that I can see.

5. If it is something I am going to wear to work all day, I avoid things that have strong elastic waist. I wear regular waist bands...much more comfortable for me than elastized. Other than that, I wear what I want.

6. I am glad I have the Indie pouch. Would not go back and change.

7. I didn't lose any weight, for a while, I gained. Then, I finally got back to normal.

I hope this helps. As I said, I can only reply based on my own experience.

Sylvia