bladder capacity (& symptoms)

[Shelka]

Hi All,

I've been flaring (& flaring & flaring...) for the past gazillion months (well, that's what it feels like). Anyway, was feeling particulary low and distraught tonight, holidays approaching and the flare just NOT going away despite twice-weekly rescue treatments (<-- yeah, right!) so I decided to look up my old med records just to see what I might find.

Although I already knew this, I came across the number for my bladder capacity under spinal (430 cc's) and it occured to me that perhaps the reason I'm just not responsive to any of the treatments might be because my bladder is damaged beyond medicinal help and that the IC may be progressive in my case (I was diagnosed in '99 but had it for at least 10 yrs prior but I don't know what my capacity was back then). I'm starting to wonder, "hmm, at what point is bladder removal considered an option?"...Does a small-capacity bladder lead dr's more quickly to considering this as an option? What does a small-capacity bladder mean in terms of symptoms and general outlook? *sigh* I'm just sick & tired of being sick...sorry for being such a downer but this is getting the better of me.

Any input would be appreciated, thanks...
Shelley

[K9wife]

So glad you posted this! I'm emailing you.....

[ICLori]

I know that doctors usually only consider bladder removal when the capacity under anesthesia is 250cc or less. If your IC is progressive (like mine has been) your capacity might have been reduced even further from your last hydrodistention.

I'm sorry, I don't know much more - maybe those who have had their bladders removed know more and can help answer your questions.

Blessings,
Lori

[Shelka]

Thanks guys,

I think I'm still FAR from that point (I hope), because I fear that might bring a whole other set of problems, and there are a few more things/combinations I've avoided but would still need to try. Though sometimes when the pain/sense of got-to-go is there 24/7, day-after-day, I start thinking "what if I'm still like this in 2, 3, 5...years?" At times when it used to be really bad, I'd just say to my husband & family "I wish I could just have my friggin bladder taken out!!" and their reaction would be sort of like "Oh come on now, don't be silly/overly-dramatic/etc..." I guess it's hard for people without IC to understand!

Here's a few more questions if anyone might know: is it possible to assess how much your bladder capacity is through uro-dynamic testing or any other way or is the only real way by being put under? When I had my hydro-distention & the dr. reported my capacity it was under a spinal & not general, I'm wondering if that would make any difference? Finally, I wonder if Dr. tried to stretch my bladder to full capacity or not, I suppose that would be the point of the hydro...though I'm just thinking that how far *exactly* it can be stretched might be somewhat of a subjective judgement call by the dr doing the procedure? Clearly don't know much about these things!! I know I can find this info on the web but I've made a deliberte point of staying away b/c a little information in the wrong hands (mine!) can really freak one out! ;)


thanks,
Shelley

[sweetangel2080]

Have you tried measuring your urine to see how much your average output is? When was your last hydrodistension? Maybe another may help increase some capacity if it has decreased since. Maybe he/she did not distend it to full capacity but most do. I know in my case they didn't as he said they only stretched it a bit because of the bleeding.

[Imustpee]

My capacity under anestesia is 450cc...when I am awake 83cc..the uros kept coming back to the 450 number and I told them I had to be out cold to get that, and wasn't it MORE IMPORTANT what my capacity AWAKE was? The capacity I had to LIVE WITH EVERYDAY???? Dr Robert Evans wrote " Average capacity under anes for an IC person is 575cc"...a NORMAL person without IC is 1000 - 1200"....So even with a capacity of 450 I am below average by 125 cc.....
I am having my baldder removed in 6 days...I have finally been defeated after 40 years of IC...It has taken over my life to the point that I can no longer function and I am housebound...I know of no life other than with IC so I am looking forward to seeing what that is actually like. I have be wearing a foley for 4 months and I have had a little more freedom, but it is bothersome and relations with hubby are out of the question...oh well, I am hoping that 6 weeks post op I will be able to enjoy being with my hubby and not suffer for hours after wards...I will keep you all posted... :)

[Shelka]

Hi once again, thanks for your replies...

I've done voiding diaries a few times and the capacity always changes...sometimes 50cc's, sometimes 250cc's. It changes from hour to hour, day to day, so that's a hard way for me to judge.

As for the hydrodistention, I had only one and personally I wouldn't have one done again b/c the first one only made things worse for me. If it helps for you that's great but I just want to point out what an IC urologist wrote on his consult "Certainly recent evidence has suggested that repetitive bladder hydrodistention under general anesthetic can lead to a small capacity bladder because of detrusor fibrosis so she should steer away from repetitive hyrdostatis bladder dilation."

I know it seems to work really well for some people but I just wanted to pass on some info that might be worth looking into (I know I'd want to know all the facts)...

To Imustpee: I'm really sorry to hear how long you've been suffering with IC, I can only imagine your frustration. I certainly understand your decision given how long you've had to live with it. I'm sure you know both the pro's and con's (I only know very little so I can't comment as to the procedure) so I wish you the very best of luck and a speedy recovery. If this can give you back your life then that would be incredible! Please do keep us posted, I'm sure everyone is anxious to hear how everything goes for you.

take care,
Shelley

[Sarojini]

Hey Shelley!! Again, sorry for being so out of touch -- my new job is AWESOME, but I'm busy as all heck!!

Anyway, I want to say that you sound a lot like me. I was diagnosed in early '04 but had IC symptoms for about 20 years (since childhood) before then that just worsened and worsened, finally driving me to several doctors. When I was finally diagnosed my bladder was in the "severe IC" stage. While some treatments have helped (Elmiron and hep/lido/bicarb instills) with the frequency and the amount of blood seen on urinalysis, I still deal with a gotta go feeling fairly often, and pain quite often as well. We've pretty much determined that since things went on so long, I probably have nerve damage down there now... I know,lovely, huh?

Recently, my pain clinic put me on a new med called Lyrica in addition to my regular pain regimen (there's no generic yet, it's brand new -- but the common name of the drug is pregabalin). It is in the family of Neurontin, and was designed to deal with nerve pain from things like diabetic neuropathy, postherpetic neuropathy (pain after shingles), etc... but a lot of docs use it for other suspected nerve pain. I have had great luck with the drug, not many side effects, and a definite reduction in the shooting pains and "gotta go" feeling on an empty bladder. This suggests I likely DO have nerve damage. This sucks, because it means it won't go away and that my IC was progressive over the years, but is also good that there are methods of treating it!

Just wondering if you have the drug Lyrica (even under a different name) in Canada... you may want to try something like that, even though you don't always have horrid pain. I do believe the gotta go feeling is also related to abnormal nerve impulses, and perhaps the drug would help you as well.

Let me know what you think and how you're doing!!! :grouphug: