IBD-A MOM's guide to survival
 
My 10 year old daughter Madison has Crohn's Disease or IBD. She has been sick for well over 3 years and her disease has not been able to be managed by medication, diet or other treatments. This disease affects every aspect of her life. In a search for alternative treatments, I came across a procedure called fecal microbiota transplantation or FMT. This procedure was first used in the 1950's but more recently it has been used to very successfully treat Clostridium Difficile (C. Diff.) It is now being used to treat Ulcerative Colitis & Crohn's and there are clinical trials going on all over the world, including Canada. There is also talk in the medical community of using this groundbreaking, SAFE, non pharmaceutical treatment to treat Multiple Sclerosis and other autoimmune diseases, obesity and even acne.
FMT works by replacing the unhealthy gut flora of the patient with the healthy flora of a suitable donor. More on that later..
After researching FMT on the Internet for several months (while watching my little girl's health fail while she came off of yet another high dose of prednisone) I started an intensive search for a doctor who would perform this procedure in Canada. Long story short, this is a procedure that is not yet approved for wide spread use in Canada. There are several clinics around the world (mostly in Australia, the UK and the USA.) and their protocols are mostly quite similar. The reason for this is that most protocols are based on those of the pioneer of this procedure: Dr. Thomas Barody of the Australian Center for Digestive Diseases (CDD).
After much discussion with many doctors and clinics in the US and around the world, I settled on Dr. Mark Davis from the Bright Medicine Clinic in Portland Oregon. He is a naturopathic doctor with a passion for helping patients with IBD and other digestive diseases. I chose him not only for his proximity (Portland is only a day trip by ferry and car from where we live in beautiful Victoria, BC.) but for his passion for helping people who live with these diseases and his experience and interest in FMT. More on that later too.
As I embark on this journey with my daughter, it has been brought to my attention how many people (parents and children alike) struggle with this disease. Many parents I talk to feel as though a life of medication, restrictions and pain are the only options for their kids. I believe that medicine should be inclusive of all types of medicine. Pharmaceuticals are not the only option for these diseases. Although I may not be able to access all of the options in Canada, there are other options out there...but I had to look for them. I've had to look hard. I've had to look past the advice of trusted professionals in many cases and I've had to look past the "ick factor" and get down to pure science too.
I am just a mom who loves her daughter and wants her to live the best life that she can live. That's what all of us parents want. I hope that by documenting this journey, I can help someone else answer their unanswered questions and hopefully provide information and support where it is so badly needed.
We leave for Portland on April 26th to spend 2 weeks in a hotel room together as a family. My daughter Madison, Scott (the love of my life and biggest support to both Maddy and I through this) and our trusty rescue dog Echo, because no journey would be complete without her. Maddy will have her FMT treatment and we will be there to support her every step of the way.
I hope that by sharing this journey, we help someone else along their own journey..
 


Comments

Misty
05/08/2013 6:49pm

Amazing journey!! Maddy is one Lucky girl to have a mother that will stop at nothing to make sure she lives a happy healthy life!! Thank you for sharing your journey, it makes me proud to be a part o f an organization that will greatly impact lives just by putting our message out there. Very proud of Maddy!!

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Rebecca Kirstein
05/10/2013 11:44pm

Thanks so much Misty, I just saw this comment so I must have missed it before! Your support is SO appreciated. By me and especially Maddy!! :)

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Karen
05/11/2013 3:29pm

Thanks for sharing; it's very informative. Maddy is indeed fortunate to have such a devoted & clever Mum.
My son has IBD as well; I didn't start to discover these other choices until he was on Remicade:) wish I had known sooner as he doesn't want to stop a med that is giving him relief to try something else & he is old enough now to make his own decisions. I'm still investigating & this blog will be part of his reading list I am creating for him! Thank you & sending lots of healing thoughts for Maddy!
Karen in Ottawa

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