Tuesday, January 12, 2010

Interstitial Cystitis: And trying to pronounce it is the easiest thing about it...

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.)

17 comments:

  1. Kathryn,
    I found your comment on my blog, and I'm really, really glad to hear from you! Thank you so much for posting about your IC as well!

    I'm really sorry that you ever have to go through Crohn's and IC, but it sounds like you've come out on top, and I admire you very much for it.

    My IC is still flaring pretty badly, but when I see that others have been able to manage their symptoms it gives me more motivation not to give up.

    I've spent many a night in the ER because of Crohn's and IC--I went in early Christmas morning because my IC medicine was causing some rather nasty problems. These things certainly have no mercy or planning around our lives, but it's good to know we're still able to live happily.

    I will definitely be reading your blog, and I wish you the best.

    Stay well!!

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  2. Hi Bonnie!

    It's been really nice finding others with Crohn's online - truly theraputic in a way - as I don't know anyone personally. I'll be reading too and wish you all the best -- hope the new year brings some good news health-wise!!

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  3. Aww. Matt's a cutie. He knows just what to say. :)

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  4. I feel like I built him up in this blog; I need to write about how he always farts under the covers or something!!! (Sorry, Matt, it had to be said.)

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  5. I was wondering how you got to the point where you don't even think about your IC. What were your treatments if any? I currently have IC and being young I really just want to flatten this creep (talking about IC of course). Thanks, Alisa

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  6. Alisa,

    I'm fortunate, that at the time being, I've controlled any big flare-ups with bladder instillations. I have an intense round of them the summer I was diagnosed, and then had them "ad hoc" when necessary. That, with diet (for example, you'll never, ever catch me enjoying a glass of OJ), has gotten my symptoms under control with smaller flare-ups here and there that I chooose to just live though. Best of luck...this is awful and I'm crossing my fingers mine doesn't come back with a vengence!!

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  7. I was telling my sister how rare the combination of things the doctors have diagnosed me is and she told me to search the web there are bound to be others and surpise suprise there you are...do you ever think the Crohns meds caused the IC? I have IC, Crohns, IBS,Endo and Diverticulitis and they are all in some state of flare up all the time...the ICs is the most recent I've had that about 3 years which coincidences with an increase in my Crohns meds so thought perhaps they were a related side effect?

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  8. Hi Anonymous!

    My IC came on before Crohn's. I had an intense bout with IC from 2003-2005 and then was diagnosed with Crohn's late in 2005. I did some research and some doctors/scientists believe IC is an autoimmune response, much as IBD. I truly think they're all related. Just as the symptoms of my IC were abating, Crohn's-related symptoms became quite intense. I think there is a link, and perhaps a hereditary component as well (my mother has an autoimmune disorder, too).

    I'm also suspicious regarding the amount of antibiotics I took while urologists were trying to diagnose my IC (since I had symptoms of an infection, yet no presence of one, they often diagnosed antibiotics). I had many, many rounds and am curious if that affected the "flora" in my bowel. Who knows, but I think it may of had a hand in everything.

    I've had subsequent short-term IC flares, and of course Crohn's flares. Often not in tandem; they seem to tag team.

    I'm sorry to hear you're afflicted with IC/Crohn's/IBS/Endo and Diverticulitis. It would be wonderful if there was a magic pill to combat them all!

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  9. Wow! You sure are a gutsy girl!!! I was diagnosed with Crohn's colitis 15 years ago and don't take any meds on a regular basis, only when it flares every 3 - 4 years. In between, I eat whatever I want (very spicy too!). Unfortunately I was diagnosed with IC several weeks ago and was despairing that life is over until I read your blog. It appears that you can eat most foods again with your IC! Is this really the case? And now your pregnant! Wow! Fantastic!! You certainly are an inspiration!!!! Would love any pearls of wisdom from you on living life with IC/Crohns. I'm feeling a little beaten down by the whole thing at the moment :-(

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  10. Hi! Just wondering if you are on any meds for your IC or Crohns? Just wondering if some IC mess might provoke the Crohns. Congratulations on the baby!!!!!

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  11. Im so thankful I found this blog. I have IC and Crohns as well. With these autoimmune diseases it just doesnt seem fair that you get more than one. It's so nice to have others who can relate. Best of luck to you on your journey. I will for sure be following along!

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  12. God Bless all of you!! I too was diagnosed with IC for 7 years with terrible pain until I read a blog of a girl with the same problems - actually sounded a lot like yours and mine. Her problem was GLUTEN! I went gluten free 4 years ago and feel better each day! NOT MORE IC for me! I want to shout it from the rooftops - I was so mad my uro dr never suggested it. It may not be the cure for all IC - but it 100% stopped mine. Please try it those of you hurting! I just started a blog myself at www.theglutenfreetexan.com where you can see my symptoms as well.

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    Replies
    1. IC is not a UTI, nor any other type of infection.

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  14. Very interesting article. I also wrote a post on IC and my experiences with cystitis: http://www.purehonestliving.com/interstitial-cystitis-lemon/

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  16. I thought I had IC, but had another dysfunction.
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