Hey I'm new here, thought id give it a try need someone to talk to about
my chron's disease. I guess ill start from the beginning to give a better understanding. I was first diagnosed with chron's when I was 14, and now I am 20 years old. In the beginning i did know how to accept having chron's, and was very depressed with all the medication i was put on. Lots of prednisone, and I gained way to much weight. Every year i was hospitalized because my flare ups would get too severe. At 18 years old, my GI doctor insisted that I try Remicade , don't know if anyone is familiar with it but it is a intervinus drug. Months went by I seemed to be fine still had bad stomach pains and occasional flare up.
My doctor took me off my pills that i was on at the time because he thought it had something to do with me not healing properly, my intestines still looked pretty bad we found out after a scope and x-rays. I kept getting extremely bad throat ulcers, so bad i could not eat/swallow for days. I lost a lot of weight and could barely walk or move bc was in too much pain/ and was too weak. This was also around the time of my senior year in high school, around prom/ and all those fun activities. I could barely walk and i was put on more steroids which made me get red bumps on my legs and ankles were swollen.
I was constantly in and out of the hospital after i stopped taking Remicade bc we found out that was the cause. At first they thought i had mono bc i was so tired all the time, then the test came back and it wasn't mono, i had to have a spinal tap, and all types of tests to see what was the problem. They still couldn't find out what was the exact cause, they jus told me i had a lupus like reaction to the Remicade and gave me prednisone and pain medicine and that was it.
To this day I have still not fully recovered, I still have bad stomach pains, have to use the bathroom way too much, always exhausted, fatigued, and anytime i do physical labor i am extremely sore, I also get red round sores on my legs and ankles when I do too much physical activity. I don't usually like to go out bc I don't like to have to constantly run to the bathroom, and end up being very sore. Right now i can not get medication or see a doctor bc my doctor no longer takes my insurance.So now i have to find another doctor and a new GI doctor.d
Thats basically long story sorta short. Just wanted to see if anyone had any similar thing happen to them or if they can relate. Sorry if my grammar is not the best and my story is all over the place, a lot has happened in these last 4 years. Thanks for reading if anyone replies...