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!!!!!!

 

Author: bethany

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22 Comments

  1. I love you, I love this and I love your POWER through God! Don’t ever let anyone take that from you.

    And I mean, ANYONE.

    You are amazing and I am so proud of you.

    You will do it! (And do Chicago next year, I’ll be there to cheer you on!) Love you!

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  2. Hi I have just read your story it bought tears to my eyes.
    I too am a runner and a keen keep fitter!
    I was diagnosed with IC two years ago.
    I thought my world was ending, I had constant pain, no urgency though.
    I did the Ic diet it took a long time and there were many tears of anger, frustration, why me?
    I didn’t run for over a year, very little exercise. This made me feel so bad about myself, it made me have too much spare time to think!
    Another year in, I have run a half marathon and run three times a week, five miles a time.
    My pain is hardly ever there and i feel so good in myself.
    Its definitely mind over matter with me, I would say to anyone with IC positive thinking and Exercise!

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    • I cannot tell you how much your words of encouragement mean to me. I have been a very active person for a long time and just this year decided to begin a training program for a half marathon. To my disappointment, IC symptoms have resurfaced. I am devastated. Finding help has been exhausting. This blog has been the most encouraging information I have found, thus far.

      I have just begun making changes to my diet, but have yet to rule out sugar and yeast. I will work on that immediately. As for my running, I feel it may be in my best interest to taper off on that until I have my symptoms under control. Because of the stories shared in this blog, I am reassured that my time away from it will only be temporary. I will see to it that it is!

      I would love to hear more about what types of foods you ate that made such great progress possible.

      Thanks again!!!!
      Mary

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      • Mary,

        I went for 1 year without symptoms, and then had a sudden flare-up that lasted 27 painful painful days. I did curb all physical activity during that time. I could barely walk or sit, let alone, run.

        Even after my sypmptoms died down after the flare, I gave it a week or two before I started running again. It was frustrating because now I am behind on my 1/2 marathon training, but I know it’s what my body needed.

        When I am sensing a flare or in a flare, I eliminate all caffeine, perservatives, acids, and sugars. I eat natural oatmeal for breakfast, almonds for a snack, lettuce with natural chicken and beans for lunch, more almonds or lays potato chips (they are all natural), and then dinner usually is just a plain natural pasta with butter and broccoli. All I drink is natural spring water. I also take a Uribel (prescribed to me by my dr) every 6 hours, and that helps with the burning during a flare.

        Keep me posted please! One of the biggest hurdles of IC is the feeling of isolation. You aren’t alone. There are many of us who have learned not only to survive, but thrive.

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  3. Thank you for sharing. The way you describe your experience with IC is very similar to what I have been going through. I’m 29 and I have had monthly flare ups since I was 25. Once they started they just didn’t stop. I also run and sometimes if it’s really hot and I’m doing a very intense workout that gets my heart rate up,I get incredibly painful uterine-like cramps. I never quit running though. I’m currently training for another marathon and just won the last 25k I ran. I refuse to quit the activities I enjoy, there must be another solution. Quitting coffee and chocolate is a huge challenge but they are major triggers. Next experiments for a cure: candida cleanse, mayan massage, and acupuncture.

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  4. Jo and Jen…you both are an inspiration to me!!!

    Jo–I am so happy you are over the “hump”. I too struggled with initial dooming thoughts upon the diagnosis, but I’m glad we’ve pushed through, and are both in a better place. Keep running! I do find that it helps relieve my stress, and I do believe that it’s kept my symptoms at bay.

    Jen–you are a rockstar! A marathon is possibly on my horizons as well, and you will serve as inspiration to me. On a side note, I had huge success on the candida diet..I do believe that is what helped calm my symtptoms and flare ups. However, when I did the diet, I could not run long distances because I lost so much weight from the diet. But, when my bladder calmed, I slowly weaned myself from the candida free diet and have had success running ever since. Good luck, and keep me posted.

    Thanks for the feedback, and reach out whenever you need to!

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  5. Thank you so much! This is exactly what I needed to hear. I have not been officially diagnosed with IC but I am almost 100% sure that is what I have. I have talked to my DR. and he has suggested that possibility. I too am a runner though. And the possibility of this diagnosis has been so disheartening. I told my husband the other day, “I will NOT give up running/exercise! I am not ready to do that. I have worked so hard to be healthy and strong and I will not have it ripped from me by this condition.” I have prayed and felt as if healing would come. But I can see that it might take some changes on my part. I am so happy to see that there are many of you who have figured out how to adapt and still enjoy the things you love. God bless!

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  6. Bethany,
    Thank you so much for sharing your story. Very inspiring to hear you are able to keep running and staying strong while dealing with IC. I’ve had it since 2006 and with diet and medication have been able to live with it and continue to run, bike, lift weights and hike. I had a huge flare up when I indulged in Coffee and Wine last month. I’ve been off coffee for a while, but it was just too tempting. I’ll not be tempted again though. Lesson learned. I am going to try your sugar and yeast free diet. One of my triggers is black pepper of all things and it’s in EVERYTHING! But by God’s grace, WE WILL SURVIVE AND EVEN THRIVE!!

    BLESSINGS,
    Karen

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    • Hi all you lovely ladies,
      Well it’s been a while since I posted, for most of the time I just get on with it. Having a break from the running at the moment, been having body aches and some I C symptoms.
      But not letting it get me down, just got to listen to your body sometimes!
      Swimming and walking instead, drinking lots if water to stretch that muscle and keeping the diet fairly simple. I know it will pass and refuse to be down and let it get the better of me. It’s hard but your mind plays a great part in all of this.
      So I say to all of you out there, “Be positive and listen to your body, cause I’m sure it’s only temporary”

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  7. Thank you for your inspiring story……I have had bouts with bladder infections that don’t go away easily. IC (has been mentioned by my ob/gun just last week)could be a possibility for me -we will see. But in the meantime, I am going to change my diet to abstain from sugars and acidic foods and see what happens. I have an appt. scheduled with an allergy clinic who claims that immunotherapy has positive effects for people suffering with IC.(have you heard anything regarding immunotherapy?)
    I, also, am a runner(I was fortunate enough to run the Boston 2007) and would like to continue to run because of the many benefits running affords me. Thank you, again, for your courage and determination-I appreciate you being willing to share your story. May God bless!

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    • well, I’m sad to say that I’ve been in a flare since last July. I’ve strung together a few good days or weeks here and there, but it’s been a very rough few months. It’s entirely my fault. Once I got to feeling good and having months of pain free existence, I majorly fell off the diet restrictions. I drank coffee every day, ate sugary and acidic food…and it destroyed me. Now, even with the strict diet, I’m in some pain each day. I’ve started elmiron, and it’s helped a bit. I’m looking in to what else I can do. I do keep up the running, because it’s my only outlet, but if I’m in too much pain, I don’t run..I just lift weights at the gym.

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      • So sorry you’re going though a flare Bethany. Praying that God will heal you and get you through this. I know how tempting those trigger foods can be. I tried a little coffee a while back but it sent me into a flare so quick that I haven’t touched it since. I went to a new GP who prescribed a Bladder Spasm cream called Gabapenten (spelling?) I’m weaning myself off of Elmiron due to the cost. $700 a month is what they want in the U.S. and Canada is up to $300.00. Too pricey for me. I’m still getting up 6 to 8 times a night even on Elmiron, so can’t hurt to try to get off of it. Hope the flare calms down soon. Thank you for continuing to share your journey. God bless.

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  8. hi i can totally relate to your story! youre an inspiration!! WE CAN DO THIS! 🙂

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  9. Thank you so much for posting your journey. I turn 40 next week and have been living with IC since 21. I have definitely had my ups and downs but have been feeling great for the last 2 years. I stick to a very simple diet and have been using elmiron with no side effects for years but have also been able to treat myself with wine with no effects when feeling good. I have started a learn to run program and have been feeling really great about it but of course the dreaded IC pain and feeling of infection has hit and I am questioning my running. I was really enjoying how the running made me feel so I am really disappointed. I was wondering if the running was the cause of my returned pain.I haven’t been away in such a long time and have a getaway planned with my husband next week for my 40th. Why now….so frustrating

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  10. Hello Betahny,
    What an encouraging story!!! Thank you for sharing. How are you feeling now? I would love to get an update please.
    May the light of The Lord shine upon you and your family brightly.
    Claire

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  11. THANK YOU THANK YOU THANK YOU!!!

    IC has consumed my physical (and sexual… sorry if tmi) life for the better part of 2 years. After reading your post, I am going to go grocery shopping tonight and get some better, more natural and preservative-free foods.

    Your story has blessed me in a matter of moments. Thank you so much for sharing this. I have been missing running so much lately (had to stop 7 months ago) and I have been desperate to get back into it. I am going to talk to my PT this week and see if dietary changes and continued therapy can lead to running!! God bless you and thank you again!!

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  12. Glad you ran that half marathon. Shocked that a Dr. told you you could not run with IC. I have had this IC beast for, goodness, 13 years now and have never once had a medical professional tell me anything about physical activity I couldn’t do. I have fibro too so my body told me some years ago no more running, too rough on my knees. But I hike, boat, swim, lift weights, do yoga and walk. If I don’t, I feel worse. What Dr.’s have told me is about the IC diet and Prelief. For me, certain acidic foods are no no’s. But not all, which makes me think it is an allergic response of some sort. Here’s to hoping more Dr.’s learn what not to say to someone diagnosed with IC. And that that Dr. stops using the potassium test. That potassium test is also not highly regarded because it is so painful. Seriously, if someone had an external burn, would you pore something acidic on it just to make sure?

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  13. Im so glad I read your post…I am dealing with the same…I love to workout and run…it has been a part of my life for many many years…I also have horrible migraines w/ the IC…the pain is pretty bad…and hinders me at work and at home. I seem to get a bad flare about every 4mos. and have bad days in between..I am fighting it just as you have but I haven’t had it as many years as you..this started for me about 2 yrs ago..and I will be 47 this year. I have been to a urologist that couldn’t tell me what was wrong..tests showed no infection..I figured this out doing my own research. I choose to treat myself as best as I can…knowing the doctors cant seem to treat this condition. I also choose not to go on a drug with side effects..for me that would just be more problems. I am still trying to figure out my triggers, etc. Thank you for talking about this..it gives a lot of us hope and encouragement to fight IC and not let it rule us. Best wishes, J. Hawkins

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    • Hi JoHannah
      I have followed the story of Bethany and all the comments she has had, and indeed commented myself.
      It can be very hard at times, I too have never taken medication but have suffered lots of pain. My flare ups might be every few months. When this happens I resort to a very simple diet and lots and lots of water. Try not to think about and stress too much… Which is hard, I know. I always think to myself it will pass in time and try to focus on gentle exercise and try to do things that make me happy. Good luck to all of us and keep our chins up at all times…

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  14. I’m crying! I have had IC for about a year now and I had mastered a good diet. I even got back to drinking a coffee every day. I just started running for a 5K obstacle race and I feel the pain coming back again. I’m determined to not let the pain take over, and make me give up running! This is the first testimony that I have read to make me believe it IS possible! Thank you!

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  15. I began having issues 4 years ago after taking a new job. Couldn’t figure out what was wrong. Went from gyne to general doc and then urologist as I also had a large kidney cyst. I am now 52 and have several flares per year plus other issues related to menopause. Have never been diagnosed and finally have appt with specialist in september. I also get very bad headaches when I’m in a flare period. Very discouraged right now as any intense workout seems to trigger pain. Can you tell me where to find diet info?
    Thank you

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  16. Man am i jealous!! Im 27 ive had this for at least 9 years but the pain only just started months ago.. I was running between 24-35 miles a week and had to stop cold turkey because each time i tried again i would have a flare up. I definitely feel hopeless like I’ll never be able to run/work out again but after reading you ran a 12k and run 5 miles 3 times a week, im thinking maybe i too one day could get back into the groove. Fingers crossed!

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