Indiana Pouch

Ant · Post by **Ant** » 2007-05-01 00:22:45

Hello, This is my 1st time here.
I am a white female and am 45years old
I Had a very rare Urtheral Caner and they removed my bladder, urtheral and the frount wall of my vagina( and rebuilt it).
I had this done on 10/16/2006.
I have to say that having the pouch has been so easy for me(but not at 1st). I am just wondering if because i have adjusted to my pouch so well now am i over looking the possibilitys of problems that sometimes arise later?
I would love to here from other Indiana pouch peoples of things that could come up, things that i should watch for.
Also questions like:
Can you gain weight or lose it from this.
Has anyone else had Urethral Cancer and has it came back?
Thank you all very much for taking the time to read this.

LGilpin · Post by **LGilpin** » 2007-05-01 07:32:30

Hi, I have had my Indiana Pouch for a little over 2 years. I am now 46 years old. I have been fortunate and have not had any problems with mine in the past 2 years. The only "problem" is that I developed an incisional hernia which I had repaired 6 months after my surgery.

I had my surgery 3 months after my second child was born. He was my second c-section. Between c-sections, surgeries when I was young for my bladder, my Indiana Pouch surgery, and a hernia repair my incisions have healed well.

I have not gained or lost weight from the pouch. I still irrigate about every other day.

I am glad to hear all has gone well for you. I know the first couple months were rough for me. I visited the ER many times the first few weeks after I got out of the hospital. Fortunately once that all passed I have been doing fine.

I hope you continue to do well.

Lisa

Lynne · Post by **Lynne** » 2007-05-01 17:19:08

I'm hoping that squid will "chime in" here. She is our resident "expert" on the Indiana Pouch ! Judith .... are you out there somewhere ?

squid56 · Post by **squid56** » 2007-05-01 22:09:09

Here I am! My pouch is over 15 years old and like Lisa, intially I had some problems too, such as with not being able to cath at times, leakage, etc. From time to time I do get infections, but in general it is an absolute joy to me. Initially I had an ileal conduit- where you wear an external pouch. I had it for 6 years and then converted to what I now have. I did not have cancer- I had a disease called Interstitial Cystitis. It destroyed my bladder so it had to come out. As for losing or gaining weight, the pouch itself has no effect on that. I can tell you for me when I put on wieght- (which I am now trying to lose) it does make mine sink into the skin, so now that area looks like a lttle dimple. It has not had any effect on how I cath. For some people it can change the size and shape of the stoma. Let me know if I can answer any questions! Judith

Ant · Post by **Ant** » 2007-05-02 23:27:20

Any tips on Irrigating?
How offen?
Do I empty my pouch 1st or not?
Any time of day better?

I thank you for any tips.

Darolyn

squid56 · Post by **squid56** » 2007-05-04 21:35:39

As for irrigating,it really deoends on how much mucus you have. You should be doing at least once a day in the beginning, for some they may do it twice or even more if the mucus is very thick and clogging up the catheter. I would empty my pouch first and then irrigate, this way it is easier to keep track of how much is going in and how much you are getting out. If you are irrigating more than once a day you can do ti in the morning. Also if you do it in the morning it may help as far as with the leakage during the rest of the day. Did your doctor give you any guidlines about how often to irrigate and how much saline to use? You may want to check with them or at least ask your ET nurse if you have one. Judith