I hope you will take the time to read Robin's story.  She is the best example of an IC success story, when the disease was caught early and treated right!  This should give hope to you as well.

Robin’s IC Story

I was diagnosed with IC on October 25, 2007.  That is a day that I remember like birthdays or anniversaries because it was a big turning point in my life in many ways.  And in some ways, that day was a rebirth.

 I started having unbelievable pains in August 2007 and was bounced from doctor to doctor before finally being diagnosed.  I consider myself really lucky, however, that my GYN diagnosed me within just a few months of the onset of my pain.  I hear horror stories of people going for months or even years before a diagnosis is made, and in the meantime they are doing more damage to their bladder.  I give credit to my doctor for identifying IC so quickly.  And I give myself a lot of credit for sticking with the diet and treatment regimen so faithfully.  I believe it really gave my bladder time to heal. 

 After being diagnosed, I was placed on Elmiron three times a day and given the IC diet.  I tried to be hopeful but I must admit I was not optimistic that either medication or diet would actually be able to relieve the horrible pains I had been experiencing.  It was difficult to stick with a plan that, at the outset, you are warned may not show any improvement for three to six months.  Even after that period of time, odds weren’t high that the plan would help.  But when it is your only hope you cling to it like a lifeline.

 When I was first read the IC diet, I thought it was impossible that I could get used to such a regimen.  And just when I was trying to wrap my head around the diet, all the other ways IC impacted my life hit me and I was devastated.  So, like most IC patients, I was depressed.  I had panic attacks when I tried to drive the car for fear that I couldn’t find a restroom fast enough, I could no longer shampoo my hair in the shower, couldn’t cross my legs, couldn’t take my vitamins because of the vitamin C – all simple little things by themselves but taken together, it seemed as if there was no part of my life that IC hadn’t touched.  It felt as if the old me had died and I had to piece together a new me with what little was left. 

 It was beyond difficult going to the grocery store for the first month or so.  Besides having panic attacks when getting in the car worrying that I wouldn’t have access to a restroom when I needed it, trying to find foods that were on the list and that had no artificial flavors, colors or preservatives was very difficult!  I prayed that God would put people in my path who would be able to help me.  Thankfully, he answered that prayer.  (One of those being Shelly – thank you!) I managed to find people who had experience with the diet and they were able to walk me through it and after a while it became easier.   Luckily, I like fairly bland foods to begin with, as opposed to my husband and daughter who put ketchup or barbecue sauce on everything!  But staying with the diet still meant that I didn’t eat out at all and took my own food and water with me wherever I went for nearly six months.

 Since I started on Elmiron and the IC diet at the same time I can’t say for sure how much either of them was responsible for my recovery but I soon started to see small improvements.  After I had been on this regimen for a month, I started seeing improvement nearly daily, then weekly, then monthly.  Now, when October 25^th rolls around I try to think back to how I was feeling in 2007 so I can remind myself how far I’ve come.  In 2008 I was feeling about 80% better but was still in some pain.  In 2009 I could say that I am pretty much back to 100%.

 I still watch what I eat.  I don’t eat citrus, tomatoes, or soda and wouldn’t even think about letting a dreaded cranberry touch my lips, but I am able to eat in restaurants and no longer have to check the food labels like I used to.  I was in so much pain that I was unable to exercise for about six months and have slowly reintroduced exercise.  I started doing gentle yoga and Pilates and have worked myself up to walking on the elliptical for three miles almost daily.  I still have trouble walking up steep hills but am hoping to get back to that eventually, but if not, that’s ok too.

 I try not to think about what I can’t do with IC, but rather of what I CAN do in spite of IC.  I wouldn’t choose to have IC but it has taught me a few lessons:

1.           People are important – they can support you and lift you up when you need it most.  IC helped me realize who my true friends are  - some were there for me and, sadly, others were not.  The strength I got from friends phone calls, emails, letters and prayers was amazing. 

2.           I am more sympathetic to people who are in chronic pain.  I thought I was pretty empathetic to other people’s pain issues but I still felt that most of those people liked to be in pain.  I know there are some like that but most are not.

3.           IC has taught me that I am stronger than I knew and that patience and persistence pay off.

4.           There are people out there who know what I am going through and are willing to offer advice and support even though they don’t know me.  All I had to do was ask.

Recently we started an IC/PBS MOARKIC support group for the Springfield, Missouri area.  We meet the third Monday of each month at the Sunset Church of Christ on the corner of Sunset and Fort.  We occasionally have guest speakers but mostly we discuss IC-related issues.  Friends and family really can’t understand our problems as well as someone who has IC/PBS.  We would love to see you there.

Good luck on your IC journey, 

Robin Vetter