Hi everyone...
Well, I was diagnosed with Crohn's/Colitis on February 14, 2002, had about 14 surgeries in three years to put me back together...including resection, ileostomy, rectal advancement flap x 8, skin grafts and then finally, a reversal. I was a pretty sick young woman. But, made it through and regained a great deal of my life back with the help of my G.I., and Remicadee. I was part of the initial Canadian group chosen for the Clinical Trial in 2002. I was on the drug for 12 years, and progressed from 8 week infusions eventually to five weeks. I began to develop severe respiratory infections and I am a smoker as well.
Two years ago, I spent most of my time with pneumonia and delayed infusions until I would be well enough to get the next infusion. The day after, I would wake up with pneumonia again and it would be a couple of months of recovery and then I would get another infusion and so the story goes.
I went off Remicadee in July of 2012 after many bouts of pneumonia and never had a cold until one week ago. It is pretty severe but manageable. I have also been developing 'boils' in the vaginal area x 2 and a large golf-ball on my butt check. And so back to Toronto General Hospital I go after not seeing my G.I. for a year and a half and I have to say, I was pretty proud of myself, (Gloating, in fact but just to myself), that I haven't had to see him and that I could live my life like I did before the Valentine's Day Diagnosis. That is what I call it...VD Day and it was a life changer. lol
I am still a smoker and age 49 but a good looking 49....a musician..was so happy to start playing again after being so sick initially...and now, I am getting sick again, I think. The is where the denial comes in...I have these 'boils', saw my G.I. yesterday and he is booking me for an M.R.I. with strict instructions to quit smoking..(YIKES), so I can go back on Remicadee. I am grateful for a loving, supportive partner who has lived without sex for a couple of months and is my rock. (lol..he is a good man and I am so thankful he is mine). But here I am again..And really don't want to believe I am. So that is my story today and nice to meet all of you..:stinks:
Well, I was diagnosed with Crohn's/Colitis on February 14, 2002, had about 14 surgeries in three years to put me back together...including resection, ileostomy, rectal advancement flap x 8, skin grafts and then finally, a reversal. I was a pretty sick young woman. But, made it through and regained a great deal of my life back with the help of my G.I., and Remicadee. I was part of the initial Canadian group chosen for the Clinical Trial in 2002. I was on the drug for 12 years, and progressed from 8 week infusions eventually to five weeks. I began to develop severe respiratory infections and I am a smoker as well.
Two years ago, I spent most of my time with pneumonia and delayed infusions until I would be well enough to get the next infusion. The day after, I would wake up with pneumonia again and it would be a couple of months of recovery and then I would get another infusion and so the story goes.
I went off Remicadee in July of 2012 after many bouts of pneumonia and never had a cold until one week ago. It is pretty severe but manageable. I have also been developing 'boils' in the vaginal area x 2 and a large golf-ball on my butt check. And so back to Toronto General Hospital I go after not seeing my G.I. for a year and a half and I have to say, I was pretty proud of myself, (Gloating, in fact but just to myself), that I haven't had to see him and that I could live my life like I did before the Valentine's Day Diagnosis. That is what I call it...VD Day and it was a life changer. lol
I am still a smoker and age 49 but a good looking 49....a musician..was so happy to start playing again after being so sick initially...and now, I am getting sick again, I think. The is where the denial comes in...I have these 'boils', saw my G.I. yesterday and he is booking me for an M.R.I. with strict instructions to quit smoking..(YIKES), so I can go back on Remicadee. I am grateful for a loving, supportive partner who has lived without sex for a couple of months and is my rock. (lol..he is a good man and I am so thankful he is mine). But here I am again..And really don't want to believe I am. So that is my story today and nice to meet all of you..:stinks: