Diagnosed in April 2006

[heath05]

Hi, my name is Heather and I was diagnosed with IC in April. I have had UTI's since I was a baby according to my mom. At age 16 I had my first kidney stone, and have been having them ever since that time. I had surgery in October 2005 to place a stent in me because of a kidney stone that would not pass. Ever since the surgery I have been having low pain, frequency, severe pain, been hospitalized many times for pain, burning, just everything everyone else has with IC. Finally, after being hospitalized the last time they sent me to a different urologist and he was the one who diagnosed me with IC in April. He started me on Urocit-K, pydridium when burning is unbearable, Ive been on Enablex, Detrol, and just today was put on a different medicine. None of these have seemed to do the job..so frustrating when you cant stop peeing. I also just started taking Elmiron. its so frustrating because of all the time you have to give it to work.. it sucks because ive already been in this pain for almost a year now and i just want it to go away..I really am getting depressed and need someone to talk to about all of this because its really starting to ruin my life. Ive tried to watch my diet but its so difficult when there is so much junk food around and on the "list of what not to eat" YOU CANT EAT ANYTHING...i hope someone replys back..and can maybe give me so help/advice since im a newcomer to this site...



SOOO FRUSTRATED. PLEASE HELP! [/FONT]

[VickiB]

Hi Heather and welcome to ICN!

It sounds like you've had a rough time with your bladder all your life! Who knew a bladder could cause such misery!

I know what you mean about the frustration of having to wait for the Elmiron to work. It's hard to wait! I am one who did find it helpful, and hopefully you will too.

I can say that without a doubt, changing my diet made a world of difference to me. The IC diet can seem terribly restrictive at first but I think it gets easier as time passes. I went from biting back tears in the grocery store because of the things I could no longer have, to now where after 2 years without more than an occasional sip or two of soda, the thought of drinking one doesn't even appeal to me any longer! The other thing I learned is that not all of the "bad" food & drink causes me problems, so my diet isn't as restricted as I'd first feared it would be. And even then, many of those problem foods I can indulge in occasionally by taking Prelief first.

I know its depressing, frustrating, and just plain maddening to be where you're at right now. If you haven't already, please read through the handbook (link at the top of page) when you have the time. Lots of good info there on treatments & self-help strategies. Most of us with IC do find our way to better days with one treatment or another, so hang in there!

Again, welcome!
Vicki

[Janie Miranda]

Hi Heather,
so sorry to hear that you are going through so much pain. I was diagnosed back in April 2005 and I am also one that the elmiron helped a lot. I hope it works equally well for you. I started feeling some relief in just a few months so maybe it will work quickl for you too. Also, I stayed on the diet very strictly for about one year and after that I found I could start adding foods back in. I now eat just about anything I want, although I still don't drink sodas or tea. I do manage to eat a little chocolate every day now and it doesn't hurt my bladder and lifts my spirits some too. Anyway, please hang in there and I hope and pray things will get better for you soon.
jane