For those suffering from IC – or having an inkling you may be affected – I wanted to forward the following information regarding an informational Webcast next week – “The Voices of IC”. Although feeling well, I definitely have my share of flare-ups (okay – at times self-inflicted – coffee, anyone?) and will be listening in. All registration information is below. I look forward to hearing you then!
The Interstitial Cystitis Association (ICA) has partnered with Ortho Women’s Health & Urology™ to host an educational Webcast, “The Voices of IC,” on Aug. 10 from 8 p.m. to 9 p.m. ET, available at http://www.voicesofic.com. “Voices of IC” features a panel of patients with IC and healthcare professionals who will give a voice to those patients who may be silently struggling with IC and work to raise awareness of IC and the challenges faced by adults dealing with this commonly misunderstood condition.
The webcast will give you the opportunity to learn more about…
• Recognizing IC symptoms• Diagnosis and the diagnostic process – a patient may be symptomatic for 4 to 7 years before the correct diagnosis is made, and research suggests that up to 12 percent of women may have IC • Working with physicians• Lifestyle and social issues facing people with IC • Resources and support available for patients and their families/friends.
As part of the discussion, participants will have an opportunity to opt-in online to submit questions to panelists.
Today I ran across blogs that dealt with the author having or discussing interstitial cystitis along with Crohn’s and it gave me pause. I have never written about IC, but I was diagnosed during my last semester of college in the spring of 2004. IC is a chronic, painful bladder condition characterized by symptoms that are remarkably similar to a UTI, sans the bacteria. Doctors do not know what triggers IC, but many patients have microscopic tears in their bladder (petechial hemorrhages) that may have been caused by constant irritation. I spent the fall semester of my senior year bouncing between urologists in Manhattan, who said there was just no bacteria in my urine culture, and they didn’t know why I had the constant, chronic need to urinate every single second of every day. I went to my father’s urologist (who has a daughter my age whom I was friendly with in high school…talk about awkward exam room talk) and I had an outpatient procedure where I was put under and they “checked on things” but found nothing. Thinking of nothing else to do, I went to the ER, in incredible pain (and although theatrical about other things, I like to think I’m a pretty tough chick) but there was nothing they could do or prescribe because my urine culture was clean. I also remember crying on the phone to my boyfriend at the time, and asking him to just stay on the phone until I drifted off to sleep to keep my mind off the pain and pressure in my bladder. I turned down any social activities that involved sitting with limited restroom breaks (think the movies), and counted 14 visits to the restroom one day at my internship (and this is with me desperately “holding it”). Very much like a UTI, when I visited the restroom I only urinated a few drops, and left no relief.
Finally a urologist mentioned interstitial cystitis, and at the same time my mom read about a doctor who specialized in it who was moving to a practice in my hometown. She was giving a free lecture on IC and other bladder conditions at our local hospital and I remember coming home for the chat, and my boyfriend and I being the only people in the room under 50. (But they also provided tasty sandwiches so I was pleased about that…some things never change.) I visited her office with my mom and shortly thereafter began bladder installations, which is when—in an office setting—a cocktail of medications are pumped to your bladder via catheter and left there for about 15-30 minutes, and then the medication is either drained her expelled through urination. The medications are meant to fuse to your bladder lining, to soothe those tears, causing inflammation to decrease, and thus alleviating painful symptoms. I had two infusions per week for several weeks to rev up, and then one infusion per week and my symptoms started settling down. I had already known that a sip of coffee threw me into an IC flare-up tailspin, but I also cut out anything remotely acidic at this time (maybe not so remarkably, the very same things I continue to limit due to Crohn’s: citrus, spicy foods, coffee and tea, soda, and so on).
It was at this time that I met Matt (I called him to finalize arrangements for our first date during some lag time at a doctor’s office) so he’s never known me as not suffering from some sort of very non-sexy condition. And, if you can believe it, I was very reticent to tell him about it! When I did dish, saying things like, “Well, this is sort of gross” he replied – and I still remember this – as we were walking into a grocery store to purchase some of those OTC urinary analgesic pills to soothe my symptoms, “Kathryn, if that’s the worst thing wrong with you, then I think I’m pretty lucky.” I still tear up thinking about that, but now I can laugh (a bit) sadistically, as I also saddled him with Crohn’s a year and a half after that.
An IC flare is awful and all-consuming. For women, think of a painful UTI that never goes away. For men, imagine having a full bladder but finding no relief, and general pain and pressure in your pelvic region, and stinging during urination. But, such is life, so I made the best of it. Matt got to calling my bladder “Bladimir” and would carefully monitor my alcohol, tea (I didn’t touch coffee in those days), and caffeine consumption. My flares became few and far between, and today I can eat many of those foods and usually only have symptoms a few days a month.
I didn’t mention my IC previously because, frankly, it’s the least of my worries (and fingers crossed, it continues to be mild), and hell, I complain about enough stuff. I didn’t want to be the sick girl, or the girl who has endless health woes, or the girl who makes Matt’s parents question what the heck he got himself into. But scientists don’t know what causes IC, and there is speculation it is an auto-immune disorder, or accompanies other auto-immune disorders (uh ah!), so I think it deserves discussion. (Or at least a sorry little blog post.)
