An Advocate’s Lesson From Clients With IBS, Crohn’s and Others.

When I lived in India, I had a few episodes of extended periods of diarrhea caused by bad food or water.  It was some of the worst days of my life.  I suffered through and was glad to survive intact.  It was an experience I never wanted again.  It was awful.

I thought nothing could be match that until I started having clients with Irritable Bowel Disease, Crohn’s, Celiac and a host of other gastrointestinal disorders.  I was shocked  when I realized my few weeks of bad stomach and diarrhea can be everyday life for someone with any of these chronic illnesses.  The severity may vary but the constant problems persist; a very uncooperative and out of control bowel.

The solutions are never simple.  Anti-diarrheals are not the answer for most.  Diet is hit and miss and other medications may work but often cause extreme side effects.  One of my clients is under thirty and is attempting to learn how to adjust to a life always on the edge of being out of control.  The successful formula is so individual.

Many people with IBS end up with a colostomy/ileostomy.  Talk about a life changing experience.  Suddenly, you have to learn how to manage a bag attached to a bowel opening and live your life.  It takes much practice to get the rhythm of your body and getting the bag to work correctly.  And what about sleeping, exercise and all other life’s pleasures?  And those pesky insurers often don’t pay for the best quality bags or only pay a percentage of the cost.  It can be an expensive illness on one’s life and pocketbook.

Medicine is baffled by these diseases.  There are diagnostic tests differentiating each disease and we do have names.  The treatment side is still evolving.  I have seen several specialists say to my client “I am not sure why the medicine isn’t working” or “we have tried everything and you will have to live with it”.  I believe many specialist are frustrated at not being able to offer more solutions.

I would like to think the best option a client is a specialty center.  However, I have seen it work as well with an involved local doctor who personally took responsibility to do whatever was possible and continue to do research and offer solutions.  He knew it was an ongoing chronic problem and his patient was not going to be left out in the woods.

The most amazing part is people find ways to deal with their situation.  Support groups help and online resources are best.  I have to say, I am humbled and awed by people who live daily with these diseases.  It makes me have faith in the resilience of the human heart and spirit.