I’m ready to accept my fate and admit that I have Interstitial Cystitis. I couldn’t decide if I should be saying “I suffer from…” because while I willingly acknowledge there exists a certain degree of suffering, making that statement makes me feel like I’m giving into something. Which has been the biggest part of my IC denial, ever since I was diagnosed in July, 2007.
My gynecologist first suspected IC when I came in complaining of pelvic pain which I figured was endometriosis. She gave me the PUF questionnaire which indicated I likely have IC. Then she performed a cystoscopy on my bladder during my exploratory endoscopy and took pictures of my distended bladder walls. There they were on film, glomerulations indicating hundreds of tiny hemorrhages in my bladder lining, strongly indicative of IC.
With my head already spinning from this information, I didn’t react well when she told me I would need to take certain medications and follow a diet to avoid foods and beverages known to irritate the bladder. I burst into tears. Since I already have several food allergies and intolerances, I couldn’t bear the idea of having to cut out more food. Especially for a disease I didn’t even realize I had.
Yes, I do make more trips to the bathroom than most people. Yes, I have pain in my lower abdomen which I always chalked up to cramps or IBS. But I have not wanted to give up some of my favorite things: coffee, green tea, coffee, chocolate, coffee, pineapple juice, and coffee. Seriously, I already follow a gluten- and nightshade-free diet, and am allergic to shellfish and oranges, so is there anything left for me to eat?
But the evidence is strong for me, as I also share the following conditions which are common with other people struggling with IC: IBS, migraine, endometriosis, pelvic floor dysfunction (PFD), and insomnia. Also commonly found in those with IC are fibromyalgia and chronic fatigue syndrome (however I don’t have either of those).
I initially tried Elmiron which just made me feel sluggish, drymouthed, and gave me headaches to the point I couldn’t make it more than two weeks, either of the two times I tried to take it. I was also given Vesicare for hyperactive bladder, but that didn’t make me need to go any less, just a lot slower when I did. And since I didn’t really feel like I had a problem, I stopped taking it, too. Neither did I make any dietary changes. I just couldn’t get on board.
This spring, however, I started having more discomfort and decided it was worth at least trying the IC diet, so I started weaning myself from the things I loved that were forbidden. I started slowly.
My first move was to switch to low acid French roast from Trader Joe’s. Nothing in my life changed. However, I was still consuming caffeine. So about a month ago I bought some Puroast low acid DECAF French roast and made a pact with myself to drink the entire bag before going back to caffeine. I only made it two weeks.
It was a tough two weeks, too, as I’d just started taking hydroxyzine at night as my abdominal pain had become more prevalent at the same time my seasonal allergies were at their worst in several years. The heavy-duty antihistamine plus no caffeine made for a very sleepy couple of weeks.
As a result, I stopped writing or doing interesting things. My motivation went down the toilet (which I still visited often, 14-20 times a day). So I decided to try a cup of half-caf, low acid.
BAD IDEA. My body had gotten used to no caffeine so even that one cup stirred up IBS and IC symptoms. However, I still didn’t want to believe it was that bad. So I turned to my favorite stomach discomfort remedy: apple cider vinegar.
REALLY BAD IDEA! Sure, my digestion improved, however I started feeling like my bladder had razor blades swirling around in it. No, I hadn’t noticed this reaction before. I’ve loved vinegar and coffee for years. However, in absence of caffeine and acid, even just for two weeks, my body had gotten much happier and now it was punishing me severely for my transgression.
At any rate, anything I thought I knew about IC before, I’m relearning now as I determine how it feels on me, rather than abstractly in articles and support sites. As I continue to learn and find things that work for me as well as what other people find helpful, I’ll add them to the blog.
My suggestion to those recently diagnosed with IC but still in some denial is to give the IC diet a try for two weeks. It may not change your life overnight, but when you go back to your old ways, you may find its time for something new. It’s a work in progress, but I believe it’s worth the effort.