Need female advice on IP for non cancer bladder dz

8 years 5 days ago #45749 by sara.anne
I am not GailB, but I have done a lot of reading on this. A neobladder is not successful in most women. They end up either incontinent or hypercontinent. Many urologists will not use this diversion in a female. Evidently, male plumbing is more conducive to success!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 years 6 days ago #45743 by Marcia
GailB
I was reading your post and wondered why you chose the Indiana Pouch over a Neobladder - or did you have a choice.

How are you doing now?

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9 years 10 months ago #41541 by gailb
Dear Melanie:

I am a woman with an Indiana Pouch and I second most everything Cynthia had to say. I was diagnosed with squamous cancer after 35 years of chronic bladder infections and interstitial cystitis. Stay on top of having your bladder checked, because chronic infammation can lead to cancer.
First, with regard to the surgery, it is big time and I had a lot of complications. I had a colon infection after the surgery that put my life in jeopardy. Although I was in great shape before, I spent 32 consecutive days in the hospital. Prior to surgery, my bladder actually ruptured after filling with blood. So, you have complications from chronic inflammation as well as cancer. One postive thing is that most RC surguries involve removal of the uterus, cervix, fallopian tubes and part of the vagina. I can't see a reason for this in your case, although I'm not a doctor. Your surgery may be more limited than an RC performed for cancer treatment. Even though the surgery was horrific, by 3 months out of the hospital, I went on a 3 hour bike ride with my daughter over the Golden Gate Bridge. Six months out I joined a yoga class and started feeling really good.
After the surgery, my doctor wanted me to cath every 2 1/2 hours for 3 months. Many doctors don't follow such as schedule, but mine felt that because of my complications, we should play it safe. It was like bringing a new baby home. I was so sleep deprived, I wanted to cry. But after the 3 months, I relatively quickly went from 3 to 4 hours between cathing. My pouch is full now between 650 and 750 ccs (about 2 1/2 cups of urine). It is volume more than timing that makes me have to cath. I'm hoping to stretch my pouch out a little bit more so I can hold 800-900 ccs. My doctor believes in not going more than 4 hours between cathing, so, like Cynthia, I get up once each night. I cath 5=6 times a day. Like Cynthia, I put a catheter and a packet of jelly in a disposable bag or makeup bag and NEVER leave the house, even to the mailbox, without a catheter. I flush every day and sometimes, if I feel my pouch getting irritated, I flush every time I cath. Flushing is a luxury and not a burden. I figured out how to make my own saline so I didn't feel limited in how much I could use. I have traveled a 3 times with my pouch. It is not a problem. I am starting to walk/jog (I ran 3 miles a day until shortly before the cancer diagnosis)and the pouch has no effect on this. In fact, with all my bladder problems, the pouch is a lot more comfortable. I am finding, however, that it has been difficult to get back my core strength. I'm told this will come with time.
Having had both chronic bladder inflammationa and an Indiana Pouch, I would say this: the surgery is a HUGE life changing event. But if your quality of life is being ruined by your bladder disease, consider the pouch. Talk to your doc and family about it. I was a trial attorney with interstitial cystisis and I remember being obsessed with going to the bathroom. It was just horrible. The Pouch has its little surprises, but it is not painful (after healing form the surgery). My stoma is lower than my belly button (took some talking to get it there). I wanted the option of showing my belly button and didn't like the idea of having it there. In retrospect, it probably would have been fine. The surgery scares are fading now, and only the one long one bothers me. The surgeon messed up my belly button a little. At some point, I would like to have someone fix it. But overall, surgery is worth it. Good luck on your decison and hang in there with your kids. My daughter did fine with my having the surgery. Let us know what you decide.

Gail B

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10 years 1 month ago #40308 by Cynthia
Melanie, I know next to nothing about IC so I can not comment about treatments for that but Sara Anne is right is you do go the RC route please make sure it is with a Dr. and center that does a high volume of them.

I have had an Indiana Pouch since ,06 and have done well with it on the whole. When it is first "installed" you have to train it, that means chathing around the clock every two hours then two and a half and so on until you get to the place that you can cath every four hours or so and that is your new norm. I get up once a night and go without an alarm clock now and then go right back to sleep.

My stoma is in my navel and can not be seen. But different doctors place them on the abdomen so you would need to talk to your dr about placement.

I can honestly say my diversion has not stopped me form doing anything I used to do. I hike, snorkel and dance, unfortunately no better or fasted than I did before.

I know the frustration of urgency and incontinents as my treatments prior to Radical Cystectomy left me with all three. It was a relief afterwards not to be dealing with all that. Now having said that the reality is that this is a very big surgery with possible side effects and you need to really talk hard to your doctors and think this through.

I lost a kidney about two years after my Radical Cystectomy due to scar tissue and had the other ureter block a year later from the same but am now back to normal with my fingers crossed. For many this is a surgery that is done and they go on for some there are complications it is luck of the draw.

You will have to keep a check on B12 it sooner or later will need replacement. You will flush at your doctors instructions many say once a day at first. As the years go by you will have less and less mucus and flushing is about once a week for most.

I carry a makeup case with disposable catheters and lubricant packs as well as hand sanitizer with me at all times. I travel and have never had a problem as long as I pre plan.

Bottom line it is my life is normal I am happy I had this choice and it saved my life but it was not an easy road. If you have questions I did not cover please let me know and I will try to answer them.

Good luck.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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10 years 1 month ago #40293 by sara.anne
For a brief time they thought I might have interstitial cystitis, but then I was diagnosed with bladder cancer! During that time I did a lot of research on IC...what a HORRIBLE condition. I do know that cystectomy is the treatment of last resort....

Don't have any personal experience with an Indiana pouch, but think that would be my choice should I be faced with such a decision. Hope that after the holiday weekend you will hear from some gals who have them.

The most important thing, should you decide to go this route, would be to have it done at a center that does LOTS of this diversion. Success seems to be directly correlated with the experience of the surgeon. Where are you located? Perhaps we can help you find a center with some real expertise near you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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10 years 1 month ago - 10 years 1 month ago #40287 by CatherineH
Hello Melanie... Welcome to our BC forum. So sorry for all your bladder complications. I am not familiar with IC so I can't help you there, but we do have several women here who have Indiana pouches which I believe you are asking about by "IP."

It's been pretty quiet here on the forum this weekend and I trust that most are enjoying the Thanksgiving holiday with their families or are away from home. I'm sure some other members will post here soon. In the meantime, if you do a search for "Indiana pouch" with the search tool, you will find lots of posts pertaining to the surgery, training, etc.

The pouch seems to have been the first choice for most of the ladies here who have diversions, and they have done very well after the initial "training" period, but it is a difficult surgery and adjustment period. The neo sounds good, but for women, it can pose some difficulties so it is not a bad thing that you are not a candidate for that diversion.

Hope you can get some relief from your symptoms soon...

Catherine

Best wishes... Catherine
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TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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