bladder removal

[alana rose]

I was just wondering if anyone has any info or personal experience with bladder removal? I have been thinking of having this done as most of the treatments have not worked for me. I asked my uro about it and he said that I would not be a candidate since I was not married and had no children. I am 33 yrs old, single, and have known that I do not want children-I always say that I make a great aunt! And honestly with ic I could not see caring for a child, because some does I can barely get up and move around!

Thanks everyone!
alana

[ICNJess]

There are only a few girls that I know who have went through that, and they are Judith, Kara, Brea, and Beverley. Try reading Kara's story on her bladder removal:

http://www.ic-network.com/patientstories/kara.html

And there is another woman, May, who is in the process. There's a forum a little bit below here, you could look through the archives and find out more info. Good luck!

[Judith]

Alana, I had my bladder out a long time ago. It will be 18 years on Dec.31! .I was 30 years old when I had the surgery. I have been very happy, even though I do get nasty infections,I feel it is better than living the torture of IC on a daily basis. I would be happy to answer any questions you may have. I was married and had two little boys at the time of surgery. I am still married and my boys are now grown. I feel it enabled me to live a much more normal life. Judith

[Joyaur]

I am seriously considering have my blader removed..At least that would stop the urgency and frequency.
Elmiron helps me but it makes my bowels very loose...Can hardly make it to the bathroom before I explode.
Then I could stop taking any pills. I am on three different kinds for IC.

[curlycue]

Bladder Removal

All you ladies are remarkable in being able to share your stories and experiences regarding your bladder removal.

I have one question for the ladies that have had it removed.

1. Do any of you ladies have Phantom Pain?

The Dr. I asked to remove the my bladder adviced me that even if I did have it removed I would still have what is called Phantom Pain. I would still feel the pain and frequency?

I dont understand if you have a organ taken out why would I still have pain. He did not have a answer for me. Mabey you ladies will?

Thanks,
Ruth

[Dixiefireball]

i do believe you should talk to judith since she has been threw this she should have most of your answer for you.
sending you hugs and prayers
Rhonda

[Judith56]

Hi Ruth!
I got your message, but my email is messed up. So I know you sent me one, but I can not read it and I can not send out emails.
To answer your question about phantom pain, I didn't get that, but i did still feel like I neede to urinate in the beginning. I used to sit on the toilet till the feeling passed. This lasted a few months and to tell you the truth, I have forgotten what it feels like to urinate or even that feeling of needing to go. It has been over 18 years since I had my bladder out. The pain you still feel has to to do with nerves and the body's ability to remember. I was told that if you have had pain for a long time it gets imprinted in the nerves and even though the cause may be gone, for some people they still feel the pain. You may want to talk to a pain doctor about phantom pain and if there are ways to deal with it. Judith

[curlycue]

bladder removal

Hi Judith,
You are a wonderful person and I really admire your bravery and courage.

Judith,
Can you truthfully tell me that you can live a normal life with out a bladder?

Can you go the the shopping,the beach,vacations,ride in long car rides, get on planes.Can you have a normal sex life?

Thanks for your resonse
Ruth

[Judith56]

Yes Ruth,
Unless I tell people they would never I do not have a bladder. I have normal sex life, in fact it is better than when I had IC because now I am not in pain when we have sex. I have been married to the same man for almost 26 years. I raised two sons, I work part time, I garden, go hiking, etc. In fact tomorrow I am going to California to help out my brother and his wife with the new baby and my 3 year nephew fpor a week. I can actually go all day without needing to go to the bathroom. I get such a kick out the fact theat when my husband and I go for long car rides we now have to stop for him, instead of me! My only restriction is that I can not lift very heavy things, but that is no big deal. In fact I welcome the excuse! I do get very bad infections about every couple of months that I need to go in the hosptial for, but I would much rather be like this than have to deal with IC on a daily basis. I am very fortunate in that I had a good outcome with the surgery. Judith

[curlycue]

bladder removal

Hi Judith,
I am glad to hear that you are a on the go Gal. I guess you have answered all my questions regarding the bladder removal.

Do you have what is called a Indian Pouch?

You are right about going the hopital than having to deal with IC on a everyday basis. Judith can a person get pregnant if they dont have thier bladder?

What part of California are you comming out to ? I live in a little town by the name of Mira Loma but the big city that we are next to is Riverside.

I hope you have a good time with the new baby.

Ruth

[julesb44]

bladder removal

Hi all,

I have also had my bladder removed. It has now been almost 1 1/2 years. I have had awesome results! I have an Indiana Pouch. My pouch was made to be the same size of a women's bladder, which is the one complaint I have. I have to cath myself through my bellybutton every 3 to 4 hours. Sometimes I can go longer, depending on what I've had to eat or drink. I have no pain! I get crampy when my pouch is super full sometimes, but that is it! It is a difficult surgery, but I would do it again in a heartbeat! It is easy to cath anywhere. I even do it in the portapotty at my son's baseball games. I got some infections in the beginning, but they always went away with a course of antibiotics. I irrigate my pouch every night with a special solution now, and that has prevented me from having any infections for the last 6 months. I would be happy to answer any questions you may have. I finally have my life back and was able to return to teaching!

Take care! Julie

[Joyaur]

pouch

I am considering a pouch..then I could eat anything I wanted again...

Also could sleep almost throught the night, instead of waking every hour.


Why did you opt for the pouch instead of the bag? Other than the obvious...that it is internally?

[julesb44]

Hi Joyce,

My dr. had performed the pouch surgery many times. He actually recommended it. If you're worried at all about your body appearance, the pouch is great! I feel normal now,(except that I pee standing up, which isn't all bad considering how disgusting some bathrooms are!) There is an extra expense with bags also. Although, I do use one at night. You can probably go longer between bathroom stops with the bag. I need to go every 3-4 hours. Good luck with your decision.

Julie

[Joyaur]

pouch

Thanks for the comments.


My Doctor said the POUCH should be my the LAST RESORT.

Makes we wonder if he has every done that surgery.

..Then I could sleep somewhat at night instead of getting up six times...sleep deprived.

Also can you now eat anything you want?

I love fruit and can't have any except pears and blueberries.... so want the pouch or bag so I can enjoy LIFE AGAIN!!!

[mayray518]

A real life

Life means having a "life", Being able to work, take part in outdoor activities, etc. I was bedridden for 6 years with IC and if the elavil had not worked for me I would have considered the pouch. We can only suffer for so long. The docs never even mentioned it to me in 1992. I can only hope that all of us find relief in whatever method we choose!!