Hi,
I've just joined this site. On the day in 2002 that I was diagnosed with Crohn's disease I had gone to the emergency room with severe abdominal pain and bloody diarrhea. They said I had a perforated colon and needed to have surgery. I figured they'd patch up a little hole. Imagine may shock to wake up with a colostomy bag and my descending colon removed. I didn't even know what Crohn's disease was.(actually Crohn's colitis).
I've have had numerous ugly flares. Have taken mesalmine, asacol, prednisone(worked best) Remicade, Cimzia, flagyl, cipro,
alinia(sp) and others I don't remember.
Within the last year my GI recommended I remove my gut. No way! So she then wanted me to do Humira. I declined as I had side effects from Cimzia. When I went in for colonoscopy in 2013 my lungs were so full and after 2 nebulizer treatments the anesthesiologist wouldn't put me under and sent me home. I quit Cimzia.
Move forward to 2015. About a year ago my Gi recommended my gut be removed. No way! She wanted to put me on Humira. I asked to try Prednisone again. Which took care of that flare. In Sept 2014 I began VSL#3 double strength with S. Boulardi (Jarrow brand online -ship in cooler weather).
Usually two sachets a day and two capsules.
It is July 4th- 10 months later and I have not had symptom 1. So no gut removal or Humira for me as long as I stay symptom free - which I fully expect to do.
I believe you have to research, research, research, and be your own advoctate. If I knew 12 years ago what I know today about the microbiome, I would have taken probiotics along with antibiotics and may not have had to problem. I am also eating healthier- no processed junk and lots of good veggies, fruit and healthy proteins.
I also have an enterocutaneous fistula,(yet to be solved), but I'll get into that in another post.
Good luck and health to everyone out there. Research all you can about your gut and especially the little critters that live there, and hopefully you will find the answer that works for you. Listen to your doc, but also listen to your gut
I've just joined this site. On the day in 2002 that I was diagnosed with Crohn's disease I had gone to the emergency room with severe abdominal pain and bloody diarrhea. They said I had a perforated colon and needed to have surgery. I figured they'd patch up a little hole. Imagine may shock to wake up with a colostomy bag and my descending colon removed. I didn't even know what Crohn's disease was.(actually Crohn's colitis).
I've have had numerous ugly flares. Have taken mesalmine, asacol, prednisone(worked best) Remicade, Cimzia, flagyl, cipro,
alinia(sp) and others I don't remember.
Within the last year my GI recommended I remove my gut. No way! So she then wanted me to do Humira. I declined as I had side effects from Cimzia. When I went in for colonoscopy in 2013 my lungs were so full and after 2 nebulizer treatments the anesthesiologist wouldn't put me under and sent me home. I quit Cimzia.
Move forward to 2015. About a year ago my Gi recommended my gut be removed. No way! She wanted to put me on Humira. I asked to try Prednisone again. Which took care of that flare. In Sept 2014 I began VSL#3 double strength with S. Boulardi (Jarrow brand online -ship in cooler weather).
Usually two sachets a day and two capsules.
It is July 4th- 10 months later and I have not had symptom 1. So no gut removal or Humira for me as long as I stay symptom free - which I fully expect to do.
I believe you have to research, research, research, and be your own advoctate. If I knew 12 years ago what I know today about the microbiome, I would have taken probiotics along with antibiotics and may not have had to problem. I am also eating healthier- no processed junk and lots of good veggies, fruit and healthy proteins.
I also have an enterocutaneous fistula,(yet to be solved), but I'll get into that in another post.
Good luck and health to everyone out there. Research all you can about your gut and especially the little critters that live there, and hopefully you will find the answer that works for you. Listen to your doc, but also listen to your gut