UOAA Discussion Board

Hello all,

I am new to UOAA and have joined with the hopes of being able to find some help for my mom. She was diagnosed with neurogenic bladder (her bladder had completely disintegrated) and she underwent removal of what was left of her bladder in January of 2010. She is still struggling with emotional issues and is also struggling with skin irritation around the stoma.

I have read a few posts on this site before becoming a member and had noticed that some people had an internal bladder made from part of the intestines. Can anyone give me some more information about this? ie. would she no longer have the external bag she has to empty? Also, can you tell me if this is something that can be done a year or more after a bladder is removed?

Also, if there are any words of advise that anyone can give on what I could possibly say or do to try to help her cope with this new life I would greatly appreciate it. Her biggest problem is that there is not any time of any day that she can just put it out of her mind. Because of the maintenance, she is constantly thinking about it, emptying it, etc.

Thanks in advance for your help.

Care4Mom

Hi -

Since your Mom's bladder removal was not for cancer, there might be a good chance there could be some reconstruction using bowel tissue. But I strongly encourage you to find someone who has some strong experience with "neo-bladders". It strikes me that if the surgeon who did her ileal-conduit knew how to do one of the newer surgeries, he probably would have suggested it at the start.

If your Mom has not met another woman with a urinary ostomy, one of the best things you can do for her is to seek one of the UOAA local support groups and get to a meeting or set up a visit with one of their certified 'visitors'. Having a chance to talk with someone who has more or less mastered the new way of life will do her a world of good.

At the very top of this page is a box outlined in blue, and on the bottom line of that box you can click on the words "Support Groups" to see a list of the 300+ support groups in the US.

(If you are in Canada, go to http://www.ostomycanada.ca/. Similar programs exist in the UK, Australia, etc.)

Yes it can be possible to for your mom to be switched over to an internal pouch depending on many things. First of all her health and age, as well as the condition of her bowels. It is not an easy surgery and recovery can be long, plus she will need to "Train" the pouch to hold increasing amounts of urine. It is not an over night type of thing, by that I mean you just don't have the surgery and then everything is good to go, it takes time, lots of it. I started off with an ileal conduit and then after 6 years had it switched over. I had mine in 1992 when I was 36 and had my bladder out when I was 30. I urge her to get at least 2 other opinions and as Linda suggested try to meet others in your area to talk to. Judith

Careformom:

Bless your heart for looking after your Mom, I am blessed with daughters like you and from a Mom's standpoint it is a wonderful gift.

To add to what Linda said - there are 2 different things here a neo bladder or a continent urostomy. The neo bladder is also made from bowel it sits in your abdomen and is intended to replace and work the same as your origianl bladder - you pee the way you did before. I know this because I lost my bladder (and a few other things) 7 years ago to a non cancerous tumour. I do not not really know how many women have been successful with a neo bladder, typically my understanding is it works better in men. I was not successful, long story, I became so that I could not void at all and had to cathe up the you know what and then I was completely incontinent for a year.
If you search John Hopkins has a discussion bard on neo bladders.

So I went back to my surgeon in Toronto he gave me a continent urostomy - Indiana pouch, which I cathe to empty. Judith has described the process and implications of that surgery. Her advice and info is perfect. Get referrals and opinions. If I had stayed in my City the Drs. here likely would of given me an external bag.

Having said that you are concerned about her mental health as well. I can understand her being upset. But the most important thing she is alive and well. I do not have any magic answers. Linda's advice on support groups etc is excellent. An Et nurse should be available to her and she could give advice on such things as skin irritation.

I know all this is not much help but hang in there. I know that Mom is lucky to have you.

Best wishes

Debi

Thank you ladies for your information and support. I have read a little bit now about the neo bladder vs. continent urostomy. I will also continue to encourage her to join a support group. She is in Arizona, I am in Illinois - so I can't just pick her up and make her go with me to one. It is so hard to be so far away.

I have looked on the support group list and see nothing near to her. She lives in a small town near Prescott Valley, Arizona. (There are several groups in Arizona, but none within a reasonable driving distance for her). Any idea how I might find out if there is a group in Prescott or Prescott Valley that isn't listed on this web site?

I would call her local hospital- they might know of a support group near her.

Calling her local hospital is a good idea. Even if they do not have a support group, they might have other patients who are willing to talk to new patients. You might also call one or two of the groups in Arizona. They might know of someone living closer to her that she could talk to.

Thanks again... she had the surgery at the Mayo in Phoenix, which is about 2 hours from where she lives. She did get referred from a local doctor ... I'll try him.

Good luck! Let us know if are successful.