Hi I'm 25 female, diagnosed with CD 3 years ago after a year long flare, lots of tests, hospitalization, denial...just dark times. I'm sure you can all relate. I'm pretty sure I had my first flare at 19 but it passed after a couple months then started again like 2 months before my 21st birthday ten fold. I lost 80lbs that year! I tried asicol and lialda But I got no benefit from them without prednisone which had its own crazy side effects specifically swollen ankles and extreme behavior. So I started remicade and it worked great for a year and a half except I got a lot of ear infections and sinus infections.
Last October I was fired from my job because even though I had fmla and notes for all of my absences, plus made up every hour I missed, my employer told me my doctor didn't specify my absences were due to crohn's disease or a side effect of my medication in the notes. They failed to mention that to me for almost 2 years, until my last review. So I was screwed on a technicality and had to abruptly stop treatment. I wasn't too worried because I felt perfectly normal, had no symptoms since I'd started remicade. Now that I'm back on my mom's insurance I'm back on remicade after a year off. I've only had one treatment though so far but had recently lost about 30lbs due to flaring in the last couple months before being approved for treatment again. I had to leave work early a couple weeks ago with lower abdominal pressure, fever and vomiting. I went to the ER thinking I had a bladder infection only to discover it was a flare causing intestinal swelling which was pushing on my bladder. I was very sad and surprised because I never had a flare that made me feel like I had to pee 24/7 but no diarrhea. Plus I'd felt fine and was regular again since the remicade treatment in November. My doctor said not to worry, I've had much worse inflammation in the past and I have no new scar tissue, just the same 1/2 inch at the end of my illium from the major flare I had when I was diagnosed. So now I'm on prednisone for the next couple of weeks and I get my next infusion January 5th. I'm on a once every 8wk schedule.
Before I didn't want to join a forum because I didn't think I needed to talk about it or need any support. But I actually have questions and sometimes its just ******, literally. I know that so far my case has been mild and I still almost died. I'm scared for my future, although I'm positive about it I never know what will happen later down the road. I start school next month for accounting, had to postpone all that before due to all the physical and emotional problems my health has caused. I'm so excited to finally get back on track! I've finally just accepted that I have a chronic disease but I can't let it control my life and define me. I need to actually manage it because although I don't drink alcohol, I don't eat the best foods and I don't exercise other than being on my feet at work. So I'm hoping to make some friends on here who could relate to my situation. Get some tips and whatnot. Stress is my number one trigger for a flare up so anything on stress management would be really helpful. Idk anyone else with CD, not even anyone in my family has it. It can be a little lonely when nobody can relate. Well that's pretty much all there is to say about my condition other than I'm feeling great now thanks to the steroids. Hopefully my next remicade treatment will work better as it builds back up in my system. I have my fingers crossed! Thanks for reading and happy holidays to you all!
Last October I was fired from my job because even though I had fmla and notes for all of my absences, plus made up every hour I missed, my employer told me my doctor didn't specify my absences were due to crohn's disease or a side effect of my medication in the notes. They failed to mention that to me for almost 2 years, until my last review. So I was screwed on a technicality and had to abruptly stop treatment. I wasn't too worried because I felt perfectly normal, had no symptoms since I'd started remicade. Now that I'm back on my mom's insurance I'm back on remicade after a year off. I've only had one treatment though so far but had recently lost about 30lbs due to flaring in the last couple months before being approved for treatment again. I had to leave work early a couple weeks ago with lower abdominal pressure, fever and vomiting. I went to the ER thinking I had a bladder infection only to discover it was a flare causing intestinal swelling which was pushing on my bladder. I was very sad and surprised because I never had a flare that made me feel like I had to pee 24/7 but no diarrhea. Plus I'd felt fine and was regular again since the remicade treatment in November. My doctor said not to worry, I've had much worse inflammation in the past and I have no new scar tissue, just the same 1/2 inch at the end of my illium from the major flare I had when I was diagnosed. So now I'm on prednisone for the next couple of weeks and I get my next infusion January 5th. I'm on a once every 8wk schedule.
Before I didn't want to join a forum because I didn't think I needed to talk about it or need any support. But I actually have questions and sometimes its just ******, literally. I know that so far my case has been mild and I still almost died. I'm scared for my future, although I'm positive about it I never know what will happen later down the road. I start school next month for accounting, had to postpone all that before due to all the physical and emotional problems my health has caused. I'm so excited to finally get back on track! I've finally just accepted that I have a chronic disease but I can't let it control my life and define me. I need to actually manage it because although I don't drink alcohol, I don't eat the best foods and I don't exercise other than being on my feet at work. So I'm hoping to make some friends on here who could relate to my situation. Get some tips and whatnot. Stress is my number one trigger for a flare up so anything on stress management would be really helpful. Idk anyone else with CD, not even anyone in my family has it. It can be a little lonely when nobody can relate. Well that's pretty much all there is to say about my condition other than I'm feeling great now thanks to the steroids. Hopefully my next remicade treatment will work better as it builds back up in my system. I have my fingers crossed! Thanks for reading and happy holidays to you all!
Hopefully the remicade will do it's job and you will start to feel better soon.
