Hello Everyone,
I'm happy I decided to make the leap and join a forum, it's quite a relief! My daughter was diagnosed with CD almost 3 yrs ago, she'll be 17 in October. Her onset was fast and severe, in a 6 week timeframe she went from a healthy and athletic 14 yo to being admitted to Mass General for severe/critical crohns colitis. There have been too many hospitalizations to recall since then, but thankfully none in over a year. We've learned to live with the disease, but as you all know it's toll is neverending and touches upon all facets of life.
We're currently using the "standard of care", of Cimzia & 6mp, 10mg of pred & tapering, and lialda but her symptoms are worsening and we're investigating alternative methods of treatment.(she failed on remicade after 6-8mos, same on cimzia but we tried again with cimzia & 6mp) Her GI is supportive of LDN, FBT/FMT, not sure about Helminthic therapy. We live in NH, medical marijuana recently passed but won't be available for 2 more years.
My question to the forum, is how do we decide which method to try first? I'm comfortable with all of the alternative methods, but is treatment or availability an issue? For instance, if FBT/FMT works, where do we go for the treatment, same for helminths? I understand there are clinical trials ongoing for both, but after the clinical trial is over do participants have access to the treatment?
Has anyone attempted to correlate location/severity of Crohn's with the success or lack thereof of alternative treatments?
Thanks for any and all advice!
I'm happy I decided to make the leap and join a forum, it's quite a relief! My daughter was diagnosed with CD almost 3 yrs ago, she'll be 17 in October. Her onset was fast and severe, in a 6 week timeframe she went from a healthy and athletic 14 yo to being admitted to Mass General for severe/critical crohns colitis. There have been too many hospitalizations to recall since then, but thankfully none in over a year. We've learned to live with the disease, but as you all know it's toll is neverending and touches upon all facets of life.
We're currently using the "standard of care", of Cimzia & 6mp, 10mg of pred & tapering, and lialda but her symptoms are worsening and we're investigating alternative methods of treatment.(she failed on remicade after 6-8mos, same on cimzia but we tried again with cimzia & 6mp) Her GI is supportive of LDN, FBT/FMT, not sure about Helminthic therapy. We live in NH, medical marijuana recently passed but won't be available for 2 more years.
My question to the forum, is how do we decide which method to try first? I'm comfortable with all of the alternative methods, but is treatment or availability an issue? For instance, if FBT/FMT works, where do we go for the treatment, same for helminths? I understand there are clinical trials ongoing for both, but after the clinical trial is over do participants have access to the treatment?
Has anyone attempted to correlate location/severity of Crohn's with the success or lack thereof of alternative treatments?
Thanks for any and all advice!