Hi, my name is Renae and I have Interstitial Cystitis (IC) (Hi Renae!)
I began this blog in July, intending to journal everyday of my recovery. After 5 years of suffering I finally had a diagnosis, an actual diagnosis that made sense! My gynecologist who diagnosed me started me on Elmiron. I was sure that I would make a speedy recovery with possibly a Flare Up here and there. That was mistake #1.Elmiron can take 3-6 months to have noticeable results. Mistake #2 was thinking Elmiron was the only medication and treatment I was going to need. I know everyone is different and respond’s differently to medication and treatment. If, in your situation Elmiron is all it takes to make your bladder happy than I am more than happy for you. For me, this isn’t the case. By the way, Elmiron can be expensive, even with insurance. I went to the Elmiron website and downloaded a coupon that saved me alot of money,
In August, I went to see a Urologist who specializes in IC. I don’t think I could have made an appointment with a nicer or wiser doctor than Dr. L. He asked important questions and actually listened to my answers. He gave several suggestions for treatment. The suggestions ran the gammet from taking a prescription anti-histamine at night called hydrooxyzine, which he highly recommended to removing the bladder, which he was dead set against (I was very glad of the latter as I’d like to keep all of my remaining innards intact, thank you very much). I started taking the anti-histamine pills at night that work to reduce the mast cells that form in my bladder and about a week later I started Bladder Installations. A Bladder Installation is when a solution is pushed into the bladder through a catheter. The cocktail that was used for me included sodium bicarbonate, lidocaine and Elmiron. Afterwards, I have to hold the cocktail solution in my bladder for as long as I can. Are these treatments as gross and demoralizing as they sound? Actually, no. It’s a 10 minute process in the office that is performed by the nurse. It takes me longer to drive to the dr’s office than it does for treatment. I finished my final treatment of six this past Monday. Am I miraculously recovered? No. I am, as a matter of fact, in pain right now. I have had a few days here and there where I feel great though. I go for a follow-up visit with Dr. L tomorrow. I’ll admit that I’m sort of afraid of what the next course of action will be. I don’t suffer from latrophobia but I’m sure the bladder installations were the least invasive measures I recall him talking about. I remember removing the bladder as not only being the most invasive but the one treatment that I had to ask him to stop talking about for a moment while I put my head between my legs so I wouldn’t pass out. Normally, that type of reaction only happens when I’m in a room where childbirth is being discussed. That dizziness/I’m going to pass out if you don’t shut up feeling began in the sixth grade during sex ed while the teacher explained the birthing process and has stayed with me through the years. Seriously, I’m surprised I even chose to have a baby myself. Anyway, tomorrow’s appointment is making me a bit anxious.
Another thing worth mentioning at this point is my diet. When I was diagnosed by my gynecologist in July, she handed me a print out with pictures of food and what to avoid. I’d say after further exploration, that the print out must have been a rough draft. I’m already gluten-free and have been for over two years. According to the print out I received from Dr C., I would only have to eliminate a few more things like tomatoes, soda and chocolate. I’ve never been a huge fan of tomatoes, but come on, chocolate AND soda are no-no’s too? Of all the things I’ve given up over the past 2-3 years, I miss soda the most. In fact, before I found out that I had IC and I was having a painful day, I would often stop at the corner store and get a soda and M&M’s as a comfort food. It turns out, what I was using to comfort myself was actually hurting me more. This disease with all of its quirks and what-works-for-one-person-may-or-may-not-work-for-another baffles me at times. I know several people who are gluten-free or who have family members that are so they are at least familiar with what is gluten-free and what is not. Other people choose to go on what I like to call a “I’m gluten-free because the last fad diet I was on didn’t work for me” diet. I am gluten-free out of necessity, they are gluten-free out of choice. The one good thing that has come from their choice is that Celiac’s, Crohn’s Disease,and gluten intolerance has come into the spotlight and there are several more gluten-free items in both grocery stores and at restaurants than there were even two years ago when I went gluten-free. Yay! This has made shopping and going out to eat a bit easier. However, I have yet to see one item in the grocery store marked “IC Friendly” just as I have yet to meet another person who has IC, even though statistics are that over a million people have IC. I bought a cookbook called “A Taste of the Good Life” by Bev Laumann from amazon. I’ve decided that until I go into remission, which i have to believe that I someday will, I’m only cooking recipes from this cookbook. Going out to eat is expensive for me, not only financially but physically. Most every time I go out to eat, I’m in pain within the next twelve hours. I’m hoping that by using this cookbook for a month I will train my mind to remember the ingredients so that when and if I go out to eat again, I can do so without harming my bladder.
So I’ve mentioned Elmiron, which I take an hour before every meal along with generic Librax for my IBS. I’ve also mentioned that I take a prescription antihistamine called hydroxyzine before bedtime. Have I mentioned the wonderful medication called Uribel? Come closer, let me tell you about it. It’s the little blue pill for IC. Yes, it’s a pill that enables me to have a normal sex life. One of those blue pills taken about 10 minutes before the party begins and I’m feeling no pain. Really? you ask. Yes, really. I was at the point where I felt sex was a punishment of sorts. I have no complaints about my partner, the pain I was feeling during and after all had to do with my body. Every time I had sex, my vagina would have muscle spasms that lasted a really, really long time. Okay, you can back up now. The only side effect from Uribel that I’ve experienced is that it tints my urine blue the next day. This has caused me to refer to the pill as “The Smurfer”. If that’s the only side effect I suffer from the pill in okay with it. Color me blue 🙂
Ms. Peebody 