Guest Post for IBS Awareness Month: Misinformation, Mystery, and Muddling Through IBS

IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month. We thank her for her time and sharing her important experiences and insights.

Kathy Kersmarki lives in Winter Park, Florida. She worked twenty five years as an elementary school secretary/ bookkeeper and is now retired. After suffering for five decades with IBS and not sharing her story, she finds that being forthright about IBS  initiates meaningful conversations  and helps others to understand the condition. It also opens the door and allows other sufferers  to share their stories  as well. 

​I would like to thank Nina Pan for the opportunity to share my IBS story.

I believe I can safely say that anyone who suffers from IBS feels the impact on every aspect of their lives. It affects work life, home life, leisure life and relationships.  It becomes all consuming and everything sufferers do revolves around the condition.

I have had IBS for five decades that I can determine and may have even had it as an adolescent and teenager.  For years, I didn’t have a name for it and only knew I needed answers that never came.

I don’t blame the medical community entirely but I do believe that they should be availing themselves of scientific, documented evidence and should be passing this information on to patients.  Most of us have spent years going from one doctor to another to be told the condition is from stress, from food, from not getting enough exercise and if we just take this pill, or discontinue eating particular foods and stop being stressed, it will all get better.  The problem with that is it doesn’t get better without doctors truly understanding IBS.

I was at my wits’ end with IBS when I stumbled across a Facebook IBS support group which is science based. The administrators of the site made it clear that it wasn’t a forum for the latest gimmick or the newest over the counter herb or medicine.  I had spent years asking doctors and searching for information and in one site I learned that IBS is a brain/gut disorder and all of a sudden, the pieces started to fall in to place.

At this time, I was fortunate enough to find a gastroenterologist who listened to me and listened to what I was learning and together we made a plan. I told her about my anxiety and how I had become a captive to IBS. I was afraid to leave the house because when I left the house, I worried I would need a bathroom and that anxiety I felt caused the self fulfilling prophecy of needing that bathroom. Because I couldn’t leave home without needing a bathroom , I began planning my day the night before. What would I wear to disguise any issues, what would I eat, where were the bathrooms. It became a vicious and horrible cycle that many who suffer from IBS share.

She started me on a low dose anti-anxiety medication which in conjunction with the low FODMAP diet put me on the road to living a more normal life. I determined trigger foods and tolerated foods and was able to eat a healthy diet.  I also learned about Michael Mahoney’s IBS gut-directed hypnotherapy from the support group. His program enabled me to retrain the mind/gut connection. That was the last piece to the puzzle of my IBS and for eight months, I have been able to live the most normal life I have had in decades.

I believe there are answers for IBS sufferers but it is extremely vital that research continues and science based information is disseminated to everyone who enters a doctor’s office with questions about their digestive systems and the problems they have.  My hope is that every doctor, especially gastroenterologists, begins to tell their patients there is hope and to explain the brain/gut connection and help people to better cope.  My heart breaks reading some of the stories on the IBS support page. People are grossly misinformed and they are willing to try anything and everything regardless of how little it helps or how dangerous it might be.  I believe this is because the medical community doesn’t do a thorough job of learning the newest science based research and they too quickly dismiss the patient’s concerns.

I know I am one of the lucky ones who is managing to live a fairly normal life with IBS and I hope one day all sufferers will have the same results.

 

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