Bladder removal or enlargement

[IC/IBS Hopeful]

I'm getting to the point where I am not sure what will happen. My second round of botox caused me to have retention and now I can not pee on my own at all. Because my bladder is small and only holds 200cc before it beginns to feel like it will explode I have to cath often. I don't have pain or urge between cathing so I am greatful for that.

What I want to know from you who have had their bladder removed or enlarged is when did you decide it was time to do that and what is involved?
Was your IC active at the time? My doctor says the doctors in his hospital will not do it if the IC is active. Because it will just regrow on the new one. Has this happened to anyone?
I have lots of questions. I am at the point that we have to wait and see. He hopes the botox will wear off in the next 6 months. He said we need to wait to see how I feel. Maybe I will feel great. Maybe I will be worst. we just need to wait.
I would love any input. He did say there are other Doctors in the US that will do the surgery and I could try talking with them. I don't even want to concider it unless I am sure it will not regrow on the new one.
One good thing out of the 2nd botox is when he went in my bladder this time he said it looked much better than 6 months ago.

[Trishann]

Hi,

As far as I know most of those who got their bladder remove did not get IC back in their pouch but the potential is there and it has happen but so far only a few did get it back.

Ususally doctors in the US only do bladder removal if the bladder is decrease in size and some will do it if treatments does nothing for the bladder.

If you go to the search bar in the blue and click it. Type in "options bladder removal" it will show some threads about bladder removal that may help you.

Hugs, Trish

[DebbieD]

It is called several,.Names. Mine was Cecum-cysto Plastic Bladder. Part Bowel and part Bladder. Now in my Case I still had IC.I was Self-Cathing. I was doing it about 20 times a day. I had this Surgery done twice. Now in your Case it my be different. But I had a Very Bad severe Case of IC that we Tried Everything on Earth to think of to work. Before My Last Option was removing my Bladder totoally. I had my done in the the Early 80's

Talk to your DR. Each person is Diffferent.

DebbieD

[Kara29]

I knew it was time when I began peeing every 5 minutes and was in horrendous pain and could no longer work. And it was only after I had tried every single treatment that was out there at the time in 2002. Then in 2006 I had my urethra removed and an Indiana Pouch made from my Neobladder. If you have specific questions about my experiences with these operations you can PM me. I have not had IC come back and it's been 6 years. IC does not typically grow back in bladders that are totally removed and are made out of intestine. But anything is possible and there are some of us who have had it come back. Fortunately it has not happened to me.

Kara

[IC/IBS Hopeful]

I have tried many drugs, instills and the interstim. Nothing works our last option was the botox. First time was great second time? well now I am cathing 10 times a day. until it wears off.
My bladder capacity is only 200cc now. after the Hydro (which he stretched me to 400cc (1st time) 500cc the (2nd time) I was able to hold about 300cc that was about 1 1/2 months ago. For the last week I have not cathed more than 200cc and this is when I feel full. My guess is that my bladder has shrunk down again.
How long did you have to stay in the hospital? how long does it take to recover and able to return to work?

[Trishann]

Again if you go to the thread on options bladder removal or Private Message Kara, she is the one that gave me all the information about different kinds of bladder removal. She is very knowledgeable in this stuff you are asking. If you don't know how to do the Private Message, please let me know, and I will try my best to talk you through it. The reason why I ask this because I was so new about computers and the internet. This might not be your case but I thought I would bring it up just in case. You will learn what you need to know.

Hugs, Trish

[Judith56]

My doctor was the one who decided it was time for the surgery. My IC was certainly active when I had the surgery- in fact I never had a time in my life when it was in remission. I have not had IC return in my current pouch and it is 16 years old. I did have an augmentation cu=ystomplasty done to start with and then the IC did spread to my enitre new bladder. That was due to the fact that they left the base of my bladder in and that had IC still in it. When they took out my entire bladder and urethra 21 years ago, it never came back in any else that I had done.

[SrMaggie]

I had tried all kinds of meds - Cardura, which is really for heart and men take it for prostate problems (didn't work), DMSO (2 rounds of 6 weeks each) - worked for a little bit, Hydro-distention(3 times) - worked for a little while and then back to the old routine, Interstim - worked for a time, but my bladder was too small, Enablex, Elavil, Elmiron, Vistaril... The later meds helped tremendously with pain. I was pain free most of the time - at least that's how I see it now. PFD consult. Refused Botox because of the incontinent issues. I stuck to the Diet - more than I realized, because when I had the surgery, I was very reluctant to start eating the things I had been avoiding - I didn't realize how many things I kept away from.
After 5 years of prayer and research, the doc and I decided it was time. He had exhausted everything he knew to do.
It was definitely not something I went into lightly. The community of sisters that I belong to asked me to get a 2nd opinion in another city - which yielded the same results - except for the suggestion of PFD which my doc had just about ruled out.
I am enjoying my life now. I will be able to return to ministry and work productively for many more y ears - I hope.
If y ou would like to PM me feel free.
Maggie