Decision criteria??

[lotsofgirls]

Hi everyone,

I'm surprised that its not our decision when we've had enough. I realize that we have all these treatments and pain meds etc but I still think it should be our choice. I am trying to continue my career but its limited by the disease, raise my kids, limited by the disease, live daily with pain or be a zombie, and all the other parts of this. At some point you recognize its infringing too much on who you are.

I was hospitalized awhile ago for this disease and had to wait in pain while I retained for over 3 hours to be cathed, (too much spasm to self cath). I truthfully wanted someone to shoot me to get me out of the pain, the hospital was too busy with other patients and I had to wait. I think I just decided that I had enough, you can only keep smiling and try something else for so many years then you want to take control back and do something about it.

Thank you for sharing your stories on my other post, I guess I am just very discouraged right now.

Cath aka Lots of girls 5 daughters

[Judith]

As far as decision criteria being up to the doctor, you do have some say, though maybe not as much as you would like. One of the reasons that the surgeon makes the ultimate choice is that every surgery performed must be reviewed by other doctors in the hospital as well as insurance companies to make sure that it was necessary. From what I have seen on this board it seems that surgery is becoming a little more common now for IC. When I had mine done over 17 years ago it was extremely rare to take out the bladder for IC. Back then they didn't even believe in prescribing pain meds for IC, so we have come a long way, yet there is still more that we need to address in the way of caring for the IC patient.Any good surgeon will only remove organs as a last resort, since it is so final. I do sincerely hope that in the very near future you get some relief from your sympotms. Judith

[Kara]

For me,

I had no life and I wanted to die. My bladder could only hold 30ml. Any more than that and it would start to leak. There were so many adhesions and scar tissue in there that it felt and looked like a ball of cement and it was the size of a walnut. The bad part is that my IC was so bad that the scar tissue infested the entire outside of my bladder. This scar tissue was inflaming all of the other organs in my body. Because of this, all of my other organs down there were swollen severely. So my body as a whole was being compromized due to a dead bladder. I could not sleep, eat, or work. I had to pee every 5 minutes to an hour. I had severe retention and at time severe urgency. I went to the Emergency Room just about every 2 weeks to get catheterized with a foley catheter. In the end I wore a foley catheter for 8 months. That is when I decided I felt better when there was no urine in my bladder and then I had a neobladder put in. I will post my whole story here next.

:( frown

[sandie]

What is a neobladder? My doc wants to repair mine with part of my bowel? Anyone else had this done?