Compared to many on here I am relatively new to the crohns disease...I was dx'd almost 10 years ago, first UC then CD. I know I had issues several years before the dx. at first I was said to have a mild to moderate case....and when I would read on here what others went through or were going through, well I knew that even the word mild was overkill.
Then things got a bit worse ...and over the years I have stayed pretty level but level means the disease is active daily that it has not rested for several years...it never really stops and I have maybe 2 good days a week. Nothing major...just lots of BR trips (on average 15 per day) Other than Tysabri no meds have worked and now I am hesitant to go back on the Tysabri.
So this brings me to recent events....In the past 6 weeks I have had 5 harsh and painful attacks that include violent vomitting, severe cramps (above the belly button) bleeding at least once a week and finally last week one of the attacks got so bad I called my doctor at 10 PM and asked what to do...he suggested the ER. So off we went (my first crohns related ER trip)....I was in so much pain and the ER was so slow I told them that I would call 911 and wait for emergency transport on the curb outside...they didn't laugh, but they did fast track me....after a few hours, lots of morphine and other drugs including anti-b's...after x-rays and c-scans I was admitted to the hospital for surgery (my first hospital stay in over 35 years) the dx was a blocked small bowel.(which is what several folks on here said back when I described my first 2 attacks) by the next morning my obstruction cleared up and I felt fine...sooooo surgery was canceled and I was sent home that evening.
I have been told that we should wait until i have another attack that doesn't clear....my reg doc and the gastro in the hospital as well as the hospital surgeon all are afraid to make the first cut...they say it is never a good thing to cut a crohns patient...
I am now nervous everytime I eat because i don't know if I will block up again and I never ever want to experience that type of pain again. I chew my food till it is mush...eat lots of soup and soft foods ...I stay away from beef unless it is ground...
the fact is the hospital stay and the thought of surgery have put the fear of God into me and I am not sure now how to act....on one hand I have always treated everyday as if I was healthy and crohns was someone elses problem....and now I am almost the opposite.....except i did fly to Boston two days after leaving the hospital because my job requires lots of travel....but now for the first time I am nervous to travel.
dx IBS 1999 UC 2000 CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
tried Naltrexone Jan. 19, 2007 Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
52 yrs old