How much did your bladder hold?

**mlzippy7** · 08-13-2008, 03:40 PM

Hello
To those that have had their bladder removed do you know how much your bladder was able to hold?
I really don't want to do this but maybe it would be the thing to get my life back after so many lost years???
Was pain and bladder capacity the reasons you removed the bladder???
Thanks for any info!!

**Judith56** · 08-14-2008, 02:10 PM

My functional capacity was about 30 cc's

So I was constantly in the bathroom and I never drank anything so I was also always dehydrated. The biggest factor for me was the frequency, I did not have that much pain. When I did have pain, it was urethral. I also was incontinent and was not even aware when I was wetting my pants, plus the fact that I also had bands of fiber growing in my bladder along with other problems. I really had no choice. It is a big step and it does take time to cope with it, both physically and emotionally, but for me it was all well worth it.

**DebbieD** · 08-14-2008, 05:37 PM

Mine was Like Juith. I held 25cc and was Peeing every 45 to 50 times a day and Night. But now I just But up with some infections sometime.
It has been 24 years now sijce my bladder has been out

DebbieD

**SrMaggie** · 09-04-2008, 02:26 PM

I held less than 100cc, now I can hold 1500. I don't usually hold it that long to get that high, but that's my highest. It's been a little over a year. The first 6 weeks were no picnic at all. And even now, I'm still getting my strength back. We just started school. Usually, I can go to bed around 10:00, the last few nights I've been in bed by 8:30 and sleeping!!! Never woul dhave happened with IC, that I could sleep that long.
I find it difficult, because it takes longer to pee, now that I'm holding more and that I have to cath - but then, I'm not in the bathroom that many times. Washing out caths can be a drain also. But then I'm thankful I'm alive and kicking.

**Briza** · 09-04-2008, 03:09 PM

Sr Maggie
haven't seen you on the board in quite a while....glad to hear you are doing ok after your surgery....so you are back working and teaching?? That is just:woohoo: Teacher here, too, so yep I know how tiring the first weeks back to school are...so much paperwork, so many names to learn. But glad to hear you are doing well, so get your rest, and if that means going to bed b/f the sun goes down, so be it. You are definitely an inspiration to all, whether facing bladder removal or not! Hope you have a great group of kids this year, and as we teachers know all too well, hope your last class of the day is not TOO bad

Wishing you many good days ahead,Bri

***SharonA*** · 09-05-2008, 04:57 AM

SrMaggie...I am so glad to hear from you. You often come to my mind and I wonder how you are doing. It is wonderful to hear that you are doing so well. Don't stay away for so long next time. K? (((Hugs)))

**Kara29** · 09-26-2008, 03:01 PM

I could only hold 3 ounces and now I can hold over 1,100cc's of urine. :woohoo: On a good day, that is........

**pburghippie** · 10-14-2008, 05:26 AM

Im new at this and yet been diagnosed with ic but have a feeling that i have it. With all ive been through since i was little. But the Question that i have is I know that ic shrinks your bladder, does bladder removal happen to all ic'ers. Do I have this to look forward to in the future? And When You do have it removed. Can the Dr put back another one or do you have to pee in a bag for the rest of your life. Sorry for all the weird Questions, I think im going through depression and i dont know if i even have it but it all makes perfect since and all i want to do is cry. Im 23 years old and not going to be able to have babies with no bladder. This is whats going through my head!!!!!

**Kara29** · 10-14-2008, 08:52 AM

Bladder Removal is very rare and a last resort. Most IC Folks get help with one or more treatments and procedures for IC. This forum is just for those of us who happen to not have had help from any drug or treatment that is out there for IC.

Not everyone has shrinking due to IC.

Please don't feel that this is going to happen to you!

To answer your question my bladder could only hold 30 cc's or ml's under anesthesia. It was the size of a walnut.

I would advise you to visit the boards for being new to IC rather than this one. This board is kind of the last step and only happens to less than 1% of IC Folks.

http://www.ic-network.com/forum/forumdisplay.php?f=39

Warm Hugs and please don't obsess about this happening to you. There are thousands of combinations of IC treatments available today that could help you. It's also best to see and IC Specialist about this.

I have had it all done and I can still have a baby and yes they can put in a bladder made out of your intestines on the inside of your body so you don't have to go directly to a bag. That is what I have. But I beleive it would be best for you to start at the beginning treatments for IC rather than the end which is here.

Warm Hugs,

Kara

**Briza** · 10-14-2008, 10:17 AM

Originally Posted by pburghippie

Im new at this and yet been diagnosed with ic but have a feeling that i have it. With all ive been through since i was little. But the Question that i have is I know that ic shrinks your bladder, does bladder removal happen to all ic'ers. Do I have this to look forward to in the future? And When You do have it removed. Can the Dr put back another one or do you have to pee in a bag for the rest of your life. Sorry for all the weird Questions, I think im going through depression and i dont know if i even have it but it all makes perfect since and all i want to do is cry. Im 23 years old and not going to be able to have babies with no bladder. This is whats going through my head!!!!!

My bladder has not shrunk.

I have been dxd w/ IC and while sometimes I have to pee often, my bladder has definitely not shrunk and is of normal capacity and volume. I held 1275 cc under anesthesia. When my bladder becomes irritated I have to pee more often because of the irritation, not because it has shrunk. Please please continue your search for diagnosis and treatment...as Kara said, bladder removal is a last resort and only done under extreme circumstances. I'd say 99% or more of us (just a good guess) will never reach the point of even considering bladder removal, I'm sure Kara will agree. Please, like Kara suggested, visit the other forums here on ICN because there is so much you can learn about IC and the MANY treatments to try that can make your life very normal. The more you learn I truly believe the less scared and depressed you will be. Best wishes, Bri

**dking2** · 10-14-2008, 02:18 PM

I am newly diagnosed. My bladder held 500 cc's with the cysto/hydro under anesthesia.

**Judith56** · 10-14-2008, 05:38 PM

First off wait till you get the diagnosis, before you get all worried about the "what ifs"
As was mentioned it is not usual for people to get thier bladders removed due to IC. In fact doctors will try EVERYTHING beofre they go ahead and dp the surgery. There are many, many options to try and most likely you find that will help. My first suggestion is to try the IC diet to see if that helps while you wait to see the urologist and get a diagnosis.
I can tell you though that having my bladder removed over 22 yrs ago actually improved my life and I am able to do pretty anything I want to. I have two sons who are now men in their 20's. It is totally possible to have babies without a bladder as long as there are no problems with your female organs.