Running with Interstitial Cystitis: my journey
After almost 11 years of bladder discomfort, I was diagnosed with Interstitial Cystitis (IC) http://www.mayoclinic.com/health/interstitial-cystitis/DS00497 in February of 2011 by my OBGYN, after having what I erroneously thought was a 4 week UTI. It was bittersweet moment, as I was finally given a name and reason for the pain I had been suffering from, but it was discouraging to be told that there is no known cure for this disorder. I remember sitting in the Dr’s office after the dreaded potassium test, and bawling upon hearing the results. I said to my nurse, “I can’t believe I have a name now for what has been stealing moments from the last 11 years of my life.” In some regards I felt comforted at being able to identify why I would have to miss out on family activities, or spend days at home in bed every few weeks because of intense bladder pain. But the depression hit when I realized there was no cure for the disease, only life-style management. I decided to seek out a second opinion from a Urologist, but the conclusion was the same. I was told that there is a medicine that is available that “may” work (Elmiron), but this same medicine also takes up to 6 months to see results and has a some serious side effects, which is why I opted to not try this drug. To make matters worse, the specialist told me that the only exercise I could do was yoga and tai-chi. He said that I could not run, or even walk for long distances, bike ride, dance, etc, etc, because all of that movement would irritate and inflame my bladder. For someone who has been a runner for a long time, this deflated me.
After a few weeks of being depressed at the thought of having to live my life with this condition, I decided that I would try to minimize the symptoms by following the outlined IC diet…which is free of acids, artificial colors and ingredients, and preservatives. Initially, it was very difficult to find foods that fit in to this category, and within a few weeks of the diet, my body went in to a 5 month flare, the worst I have ever encountered. Everything I ate irritated my body, and caused tremendous discomfort. This was around the same time that my father was diagnosed with an inoperable brain tumor, and was given less than a year to live (he has received a miraculous healing, but that’s another blog post!). Because of his diagnosis, I was traveling 250 miles on an almost weekly basis to be with him. I am sure that the stress I was enduring compounded my symptoms, and contributed to the increase in the pain I was feeling. It got to the point where I couldn’t even ride in a car for more than 10 minutes, or at speeds more than 40 miles an hour, or my bladder would become flared. After walking around a store for a few minutes, I’d feel pain.
I finally decided the typical IC Diet wasn’t working for me, and after some research I decided to cut out sugar and yeast instead. That was a very difficult journey, and it was near impossible to eat nothing but natural oatmeal, shredded wheat, brown rice, veggies, almond milk, almonds, and water. Literally…that is all I lived on for months. I lost weight, which I wasn’t trying to do, but eventually I began to feel my bladder calm down. Little by little, I started to notice that I would have a day or two of consecutive health (no burning or fullness or discomfort). After putting together almost 7 days of feeling good, I went back to my OBGYN who initially gave me my diagnosis. I explained to her that I felt as if sugar and yeast were my “triggers”, and she confirmed that if I was having success cutting those things out along with the acids and preservatives, that I should continue along that path. As a last ditch effort, I asked her if she thought I could start to run again if I was feeling up to it. She hesitated, but said that I could give it a try.
For 8 months I had almost no physical activity aside from walking, so my first day back at the gym in August I simply walked slowly on the treadmill, and then did some weight training. Day by day, I’d add a little bit of activity. By November, I SLOWLY ran a 5k with minimal pain afterwards. I was sticking to the sugar free diet, but I’d allow myself to “cheat” here and there, and although I would feel some nominal pain, it was nothing like it was earlier in the year. In January, I committed to attempting to run a 1/2 marathon. I discussed it with my DR, and she encouraged me to go ahead and train until the pain became unbearable. Although stress is not the cause of IC it can certainly heighten the symptoms. My Dr. felt that because running relieves stress, it may actually have a positive affect on me by lowering my capacity to experience bladder flare-ups. I continued my training by running, weight lifting, and cross training.
For months my bladder pain was an 8-10 on a daily basis, and looking back, I don’t know how I survived that. I cried often, I prayed constantly, and I leaned on my supportive husband, family, and friends. Since August, my pain has been at about a 2 or 3, with an occasional day or two or even a rare week of being at a level 5 of pain. But I do believe that staying physically fit, combined with adhering to the low sugar, low acid, and low preservative and NO caffeine diet has helped heal and calm my inflammation.
I am happy to report that on May 20th 2012, I ran a 1/2 marathon with an official time of 2:03:35. As I ran the last mile, I had a massive smile plastered on my face: victory over this disease was only 1600 meters away. I crossed the finish line and I was overcome with emotions. Running this 1/2 marathon was significant for me because I wanted to show this STUPID DISORDER that it didn’t own me. I no longer feel inhibited or trapped by this diagnosis. I feel as if I am back in control of my body, and that IC doesn’t define who I am, or what I can do.
My friends and family prayed for me, and I begged God constantly for a miracle healing in my body. I do feel as if God healed me, but I also feel that He wanted me to take ownership over my own health, and be diligent in how I was contributing to my overall physical status. I believe that God’s power and my discipline (that he empowers me to have) have put me on a path to healing and wellness.
I am running another 1/2 marathon this summer, and am toying with idea of doing a full marathon. TAKE THAT IC!!!!!!