So for most of my life I have battled with health issue and could never get a reason or answer to as why I was sick. I would go from doctor to doctor trying to find something out but never could. Finally when I was 17 year old I got sick enough to be referred to a specialist and in september of 2009 I finally had a diagnosis, and that diagnosis was Crohn’s Disease. I was just starting my first semester of college so now with that and the Crohn’s my life was about to change in a major way.
So I started treatment for my disease and things weren’t really getting better so they put me in the hospital and on oral steroids. The worst medicine I have ever taken! I was in the hospital for 8 days in November and this was scares. I was on a strict diet all kinds of medicine to keep me comfortable and more tests. Finally after 8 days and spending the last day in there on thanksgiving day I finally got out. Like I mentioned earlier I was in my first semester of college and while on the steroids I gained major weight which was very upsetting because I now gained 50 pounds in a short time so I had stretch marks, a moon face and full body acne. I couldn’t even stand to look at myself and it was depressing, but the steroids were they only thing that worked for me so it was a sacrifice I had to make. Finally after months f the steroids I was told I was steroids dependant and this was not good so we had to seek better treatment. I did my research and came across my miracle drug and that is remicade infusions.
In march of 2010 I came off steroids and started my new medicine and I have never felt better in lay life since this new medicine! So things were looking up, yeah I still had bad days but they were less than before. No more steroids! When things start to look up I get news I have to switch Gi doctors and I loved the one I had she was awesome. So I was in the middle of switching and I was admitted to the hospital with a flare up in January 2011 and ever since this hospital stay my life has drastically changed again. While I was in the hospital I was told I had AVN of the hips and my hips were deteriorating and would need a hip replacement. Im only 19 years old and the thought of a hip replacement at my age wasso scary and I was goi to have to take a semester off of school for hip surgery. Luckily the Orthopedic doctor said I could wait but would need surgery within the next 10 years. So now I am at a new Gi doctor in January of 2010 and he is great! Wanted to do more testing though which sucked. Well he was telling me he was not sure if I had Crohn’s because of some inconclusive evidence but he wanted to keep treating me for it because I was feeling so good, which in my mind made no sense but I was okay as long as I get treated for it. Well 2 weeks after I saw this doctor something happened and he retired! So a new Gi it is. After a couple of months I finally got in to the next doctor and was not sure if I liked him much! He wanted to do a bunch of blood work that I had never heard of. So he does the blood order and the results come in. The doctor calls and says he thinks I have what’s called is Wilson’s diseases. Another disease i have never heard of! So he wanted to do more tests. All the tests came back positive but then he had to switch me to another doctor so im stuck with positive tests of a disease but no diagnosis and can’t get into the new doctor he sent me too for 3 months. So once again i am stuck without a doctor and once again I get hospitalized in June of 2011.
So this hospitalization the doctors told me I had another test come back positive for Wilson’s which I did not know about. So they run tests to see why I’m sick and come back with no answers. They treat me for my symptoms and let me go once again with no answers and no diagnosis. Finally a few weeks ago I get into my New Gi. Love him! He was super nice and great. Well they go over my records and the guy over my new Gi comes in being a jerk. He said he didn’t know if I had Crohn’s because of inconclusive evidence but still wanted to treat me but he wan to to change my treatment which I’m scared of. I also asked about the Wilson’s disease and without even seeing my Wilson’s test just one test of my eyes that was negative which does not diagnose the disease at all he said I don’t have it. So a bad visit once again with no answers and stupid doctors. So current day I am now still getting my normal treatment but waiting on some next results to go back to my doctor.
I know this is long but it’s my whole story. I fight every day with a disease that wants to win and keep me down nd I fight with doctors who aren’t helping me. I try to stay positive about things because I know I have a God whose in control and knows my every need. I try to be positive so others that see me can be positive to and make something good out of a bad situation. Im getting into volunteering and also run a support page on Facebook. Anyway I can help and give backs makes it all worth it. I’m still pursuing my dream of being a doctor and will be hopefully one day. People say i should do something easier but i know I won’t be happy for settling for less. 🙂
