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Crohn's Warrior

 Valerie Joly, a.k.a. Crohn's Warrior,  is a Crohn's patient and advocate of MAP research. 



One year after beginning my marriage I thought my ulcerative colitis diagnosis would be tough, but manageable.  Along came our daughter in 2008.  She was perfect and I was tired.  Little did I know my new family and I were in for the ride of our lives. After I stopped breastfeeding my child the Crohn's kicked in with a vengeance.   Bloody bowel movements, aches and pains coupled with extreme fatigue.   I went on the SCD diet and was almost normal with in 3 months. This hiatus abruptly ended when my gallbladder was removed.  Nothing seemed to work.  I lived in constant pain for over 4 years.  


Continuing to tweek my diet and exercise routine, I worked with GI's, functional medicine doctors, and chiropractors.  We watched in horror as my condition worsened.  Things that worked before proved fruitless.  Everyday it seemed harder to breath.  Finally we discovered severe anemia and periodic iron infusions were added to my regime after I was rushed to the hospital for a whole blood transfusion.  After that I added an oncologist to my team.  My oncologist gave me iron infusions every 6 weeks like clockwork.


I have slowly worked myself up to a place where I no longer sleep most of the day and have the energy to take care of my family.  I live with a huge list of food allergies, impromptu stints of bloody diarriah and fatigue.  I work out and keep as active as I can.  I know when I give into the fatigue for too long, it is harder to get back into the mix.  Armed with an arsenal of ice packs,fermented foods, heating pads, teas and bath salts I get through my day. I refuse to give up my life and family for this disease.


I found that by eating a  specific diet and incorporating integrative strategies that inhibit the growth of bacteria and candida in addition to Humira I am better able to stay my course.  Removing my amalgam fillings has stopped the daily bleeding and allowed my medication to better manage my Crohn's, but this is not enough.  From time to time I still experience bouts of Crohn's and when I evaluate my triggers I know in my heart of hearts that a pathogen is at the root of this disease.  


I am grateful that I am where I am in my fight and live everyday with the fear of creeping backward.  But that fear does not stop me.   I am well aware that there are people suffering much more than I do.   I am grateful and as a result I must let other patients know about Mycobacterium Avium ssp Paratuberculosis(MAP) and the search for cause and cure for not only Crohn's disease but the many other MAP driven conditions

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