I was diagnosed with crohn's when I was 17 years old. I'm 23yrs old now and have been pretty much symptom free until now. I got laid off about 2 years ago and in the process I lost all my medical insurance. I did find a job relatively fast but was put on part time and it took me quite a while to secure a position full time to be considered for insurance so I didnt have insurance for over a year and in that time I didnt have any meds and was no able to go to my GI Dr.
When I finally got insurance and was able to return to all my meds i did fine for a while. About 4 months after starting back on everything I started to have severe symptoms. The pain seemed to get so bad that i was almost passing out. I lost a ton of weight and could barley stand up. The Dr. admitted me to the ER and put me on IV Prednisone. I started on 80MG per day and then down to 40MG once I got out of the hospital. After leaving the hospital my GI put me on Humira to try and get me back in remission. I was previously on Remicade but had a horrible allergic reaction to it on the 2nd round. but it worked great other than that with putting me in remission so we were very hopeful as far as the Humira went.
Even though the Prednisone has horrible side effects it seemed to be making me feel better as far as my CD. So my GI started to pull me off the Pred. every 2 weeks we went down on the dosage. By the time we got down to 10MG my symptoms seemed to come back with a vengeance.
But being as hopeful as I was I was hoping it was the stomach flu or just my CD acting up because it happened to be that time of the month. So instead of going to my GI Dr. I called my primary Dr to see what she recommended. She examined my stomach and didnt like how tender I was on the right side. So she ordered an Appendix CT. Which happened to be the worst test I've ever had to go through in my life.
Luckily I didnt have appendicitis, but they did find that I had a thickening of my terminal illiem and a lot of inflammation surrounding it. So my GI ordered a small bowel follow through. Which I had done yesterday. At the end of the test the Dr. came in to finish it and kept saying everything looked good.
I'm completely discouraged now. I know my GI didnt look at the results yet but I'm so tired of jumping through hoops I'm tired of dealing with prednisone which my Dr. brought back up to 40MG. I think my families tired of the Prednisone as well.
I'm now getting a weird burning sensation all over my stomach. Mainly upper and also to the left side. The pain hasn't stopped and it has been horrible to work. I'm always anxious that I'm going to get sick. and to make matters worse I have a fear of public bathrooms. for some reason no matter how sick I am, and no matter how much pain I'm in I can not go to the bathroom in public places. Ive tried everything like plugging my ears or bringing in an I pod to drown out the silence. I know it sounds so weird but even when I'm home I have to run the water when I'm in the bathroom.
At this point I'm so tired of being sick. I'm tired of being angry and depressed from the prednisone. I'm tired of not knowing what going on with me. Ive never had a problem achieving remission. I'm starting to forget what it felt like to not be sick. and no one seems to understand. At work my boss just gives me that sympathetic look. I'm tired of that too. I don't want sympathy I want answers. I want to feel good again. I want to be able to go out of the house with out the fear of being sick. I miss the strong confident person I was before I got sick.
It makes me sick to think that I let my CD control me. and I hate that I really didnt have a choice in the matter. I feel like its consuming me. It's all I can ever think about or talk about. I just don't know what to do anymore. Honestly I'm to the point of giving up cause the Dr.'s aren't coming through. The test are making me look like a crazy person. I'm just flat out frustrated and don't know where to turn anymore. I just want my life back.
When I finally got insurance and was able to return to all my meds i did fine for a while. About 4 months after starting back on everything I started to have severe symptoms. The pain seemed to get so bad that i was almost passing out. I lost a ton of weight and could barley stand up. The Dr. admitted me to the ER and put me on IV Prednisone. I started on 80MG per day and then down to 40MG once I got out of the hospital. After leaving the hospital my GI put me on Humira to try and get me back in remission. I was previously on Remicade but had a horrible allergic reaction to it on the 2nd round. but it worked great other than that with putting me in remission so we were very hopeful as far as the Humira went.
Even though the Prednisone has horrible side effects it seemed to be making me feel better as far as my CD. So my GI started to pull me off the Pred. every 2 weeks we went down on the dosage. By the time we got down to 10MG my symptoms seemed to come back with a vengeance.
But being as hopeful as I was I was hoping it was the stomach flu or just my CD acting up because it happened to be that time of the month. So instead of going to my GI Dr. I called my primary Dr to see what she recommended. She examined my stomach and didnt like how tender I was on the right side. So she ordered an Appendix CT. Which happened to be the worst test I've ever had to go through in my life.
Luckily I didnt have appendicitis, but they did find that I had a thickening of my terminal illiem and a lot of inflammation surrounding it. So my GI ordered a small bowel follow through. Which I had done yesterday. At the end of the test the Dr. came in to finish it and kept saying everything looked good.
I'm completely discouraged now. I know my GI didnt look at the results yet but I'm so tired of jumping through hoops I'm tired of dealing with prednisone which my Dr. brought back up to 40MG. I think my families tired of the Prednisone as well.
I'm now getting a weird burning sensation all over my stomach. Mainly upper and also to the left side. The pain hasn't stopped and it has been horrible to work. I'm always anxious that I'm going to get sick. and to make matters worse I have a fear of public bathrooms. for some reason no matter how sick I am, and no matter how much pain I'm in I can not go to the bathroom in public places. Ive tried everything like plugging my ears or bringing in an I pod to drown out the silence. I know it sounds so weird but even when I'm home I have to run the water when I'm in the bathroom.
At this point I'm so tired of being sick. I'm tired of being angry and depressed from the prednisone. I'm tired of not knowing what going on with me. Ive never had a problem achieving remission. I'm starting to forget what it felt like to not be sick. and no one seems to understand. At work my boss just gives me that sympathetic look. I'm tired of that too. I don't want sympathy I want answers. I want to feel good again. I want to be able to go out of the house with out the fear of being sick. I miss the strong confident person I was before I got sick.
It makes me sick to think that I let my CD control me. and I hate that I really didnt have a choice in the matter. I feel like its consuming me. It's all I can ever think about or talk about. I just don't know what to do anymore. Honestly I'm to the point of giving up cause the Dr.'s aren't coming through. The test are making me look like a crazy person. I'm just flat out frustrated and don't know where to turn anymore. I just want my life back.
