I was officailly diagnosed with Crohn's in Nov 1998. I was 23 at the time and living in the dorms at college. I had always had tummy problems previously and been diagnosed as a hypochondriac, or lactose intolerent, ulcer, IBS, IBD, food allergies...
Well one weekend in October (1998) I felt really bad and the abdominal pain was getting worse- I got into the health clinic at the end of the day and they did the exam and thought my appendix was rupturing- so I was rushed to the hospital where I had what turned out to be a false alarm on the appendix. They did an incidental appendectomy and a diagnostic laproscopy. They sent me home a few days later on meds but not sure what was the problem.
Two weeks later I returned to the hospital with a surgical infection and met Dr. B.C. Patel (the GI doc who has now been treating me for over 12 years.) He said I wasn't leaving this time until they figured out exactly what was wrong with me.
After the attrocious colon prep- I had my first ever colonoscopy- slept right through it. My doc found the tell tale tissue pattern of Crohn's.
After that it was a constant schedule of doctors visits, medications, and testing. Every few months I would get some kind of related problem and end up being admitted to the hospital. The prednisone was awful and destroying my body. In the first 6 months of my diagnosis I gained 65 pounds. (It never comes off that easily.)
Then my doctor tried me on Remicade IV infusions- the were in the early testing stages at that time. Although we have had to increase the frequency- it has been helping. I currently get a treatment every 6 weeks and have been for 10 years now.
The last few years have proved more difficult. My fatigue, flare-ups, increase in meds, and all of my side effects have made it impossible for me to continue working. I am trying to qualify for longterm disabilty, but everythinng is going so slowly. So- now I just wait and suffer in daily pain. Two months ago I had my 21st colonoscopy.
My parents have tried to be supportive, but now they want me to go back to work because "they can't continue to supoort me financially". They just don't understand that this disease gets progressively worse and you can't suck it up and deal when you are this sick and having pain on top of it.
Well one weekend in October (1998) I felt really bad and the abdominal pain was getting worse- I got into the health clinic at the end of the day and they did the exam and thought my appendix was rupturing- so I was rushed to the hospital where I had what turned out to be a false alarm on the appendix. They did an incidental appendectomy and a diagnostic laproscopy. They sent me home a few days later on meds but not sure what was the problem.
Two weeks later I returned to the hospital with a surgical infection and met Dr. B.C. Patel (the GI doc who has now been treating me for over 12 years.) He said I wasn't leaving this time until they figured out exactly what was wrong with me.
After the attrocious colon prep- I had my first ever colonoscopy- slept right through it. My doc found the tell tale tissue pattern of Crohn's.
After that it was a constant schedule of doctors visits, medications, and testing. Every few months I would get some kind of related problem and end up being admitted to the hospital. The prednisone was awful and destroying my body. In the first 6 months of my diagnosis I gained 65 pounds. (It never comes off that easily.)
Then my doctor tried me on Remicade IV infusions- the were in the early testing stages at that time. Although we have had to increase the frequency- it has been helping. I currently get a treatment every 6 weeks and have been for 10 years now.
The last few years have proved more difficult. My fatigue, flare-ups, increase in meds, and all of my side effects have made it impossible for me to continue working. I am trying to qualify for longterm disabilty, but everythinng is going so slowly. So- now I just wait and suffer in daily pain. Two months ago I had my 21st colonoscopy.
My parents have tried to be supportive, but now they want me to go back to work because "they can't continue to supoort me financially". They just don't understand that this disease gets progressively worse and you can't suck it up and deal when you are this sick and having pain on top of it.
I hope you can find lots of support and infi here to help you. It's a great place!
