Friday, November 27, 2009

Fall/Winter Update

The purpose of this post is mainly to keep records of medical changes, but I'm hoping it may help anyone who is experiencing similar problems.

I was diagnosed on November 20 with Interstitial Cystitis. I had been having problems indicative of a chronic sort of UTI or kidney stones sans vomiting or fever. Every time I brought this up I was prescribed antibiotics with or without anyone sending for a urinalysis, and I had no infection several times. The whole affair was frustrating, to say the least, because this had been going on for months, and it got so bad sometimes I could not leave the bathroom; I was stuck in there for four hours at one point.

It culminated in a trip to the ER where I was yet again prescribed antibiotics in spite of the fact that my urinalysis came back negative for any infection. I was stuck at home taking dose after dose of over-the-counter medication like Cystex or AZO, and all I can remember doing is breaking down several times. Sleep only came when my body couldn't take being awake anymore, I could not lie down because it only exacerbated symptoms, and the stress from lack of sleep seriously impaired my ability to function normally. There were days going to class seemed pointless because I was in the restroom for nearly half the class itself.

This whole ordeal created a lot of tension between Daniel and I, but he has been extremely patient throughout the whole thing, and has been so sweet in running to the drug store or calling the doctor when I just couldn't take it anymore. It's because of him I got the referral from my GI to the urologist (and just in time since we had a four hour flight the day after my appointment).

Dr. L we'll call him, listened to what I had to say, took note of the fact that I had no infection present in my test results from my last urinalysis, and did the diagnostic procedure only ten minutes after our initial meeting.
The procedure itself is not something I will ever do again if I can help it. It involves inserting a lighted scope through the urethra, past the sphincter muscle, and into the bladder to observe whether or not there is any irritation or inflammation. They also fill your bladder with fluid to test how sensitive to liquid it is. That is, if you feel the same horrible symptoms you normally do from this problem as your bladder is filled then you know something is wrong.

In my case, my bladder has low capacity for storing liquids, large irritated veins were visible on the bladder wall, and things looked raw.

I was told it is IC or Painful Bladder Syndrome, and I was prescribed Elmiron for long term treatment along with methylphen for my "as needed" quick fix. I've read that this is often diagnosed in people with IBS or other IB[insert what you will] diseases. When the doctor described to me what IC was it sounded exactly like Crohn's except that you describe the bladder wall instead of the intestinal wall.

My main problems at the moment are that the diet to help IC is in direct conflict with the diet that helps my IBD, and the medicine, without insurance, is priced at slightly over $500.00. I have insurance at the moment thankfully, but I'm not sure what to do after it runs out.

Cranberry juice does not help, and it may actually make it worse. Other home remedies for UTI problems can exacerbate IC symptoms.

But we'll deal with it when it comes. I'm happy to have a diagnosis for now, and all I can concentrate on now is school, getting into a neurologist, and going to see a psychiatrist. Seeing shadows and avoiding the closet is creating problems.


Ragamuffin said...

hey -- i can't tell you how glad i am that you posted this. the symptoms you've been having are EXACTLY what i've been going through (useless antibiotics/AZO from lazy diagnoses and all). the only difference is that it's only been happening to me for two weeks; the urologist is my next step.

i'm really sorry you were going through this for so long before you were given an accurate diagnosis, and i hope that you're able to keep insurance coverage... because apparently the generic for Elmiron is under patent restriction until 2013.

take care. i would love to know how you're progressing.

Bonnie Griffith said...

That's exactly it though! I would experience horrible symptoms for a couple of weeks at a time, and then it would just disappear like nothing was ever wrong in the first place. And then it would come back...and repeat the process over and over again.

I hope you're able to see a urologist soon. I know this is NOT fun at all. Be prepared for a painful scope. They give you some numbing gel, and it only lasts for about a minute, but I just know I hate anything going up there. I'm all right with needles anywhere, but not anything like a catheter.

Kathryn said...


I found your blog through Ragamuffin's blog. I have Crohn's and IC as well, although my IC has been pretty much controlled for the last few years. I am able to control it with rounds of bladder infusions mainly, and now I watch my diet and avoid spicy/acidic things (which I limit regardless due to the Crohn's). If there's one thing worse than having a Crohn's flare, it's surely having an IC flare (b/c you just can't, as you know, for one second, forget about it...).

I was diagnosed in college as well (I'm almost 28 now), and visited three urologists/had tests before a proper diagnosis was made (and this was in Manhattan!).

Now I get flare-ups perhaps once a month or so, but they usually dissapate in 3 days approx. All my best!!! (And you inspired me to perhaps blog about it...there's so little known about IC.)