- Joined
- Jan 11, 2012
- Messages
- 5
Hello everyone 
My name is Mara Jordan and I am from Romania but I live in the United States. I am a junior in college and I am majoring in nursing. I am 22 years old and I am a beginner Crohnie, as I like to call it. I am coming up on my one year anniversary since I got diagnosed with CD and it's actually bittersweet. Everything that has happened a year ago was completely life changing but I'm very thankful I finally got a diagnosis and I'm on the way to feeling better.
On October 2, 2011 I was having a lovely Sunday.. I had gone to church and after I went to lunch at Olive Garden with some friends that were visiting from out of town. We had a lovely time After I got home from lunch, I took a marvelous Sunday afternoon nap, we all know how lovely those are, and then started studying for my Calculus and Trigonometry tests which were both the next day. I sat there thinking to myself how I wish something would happen so I didn't have to go to class the next day and I would have more time to study. Well be careful what you wish for because you just might get it!! I learned this the hard way. My younger sister who is in college as well decided she wasn't going to go back to her dorm and stay the night with me. God knew what was going on and He has His protective hand on me. Around 6 pm we were goofing around, laughing and being silly when I noticed I was getting really cold and started shaking uncontrollably. I went and put on two pairs of sweatpants, two hoodies and my comforter and turned the heat up to 80 and I was not getting any better. I started getting stomach pains and my fever had reached 104. Of course my sister started freaking out and crying and saying we need to go to the ER, but me being stubborn as horse kept telling her I'm fine. I knew something was really wrong but didn't want to scare her. Things weren't getting any better and by 8 or so I couldn't even walk because of the stomach pains that started a little bit after the fever.
Long story short, we ended up going to the hospital. As I sat in the waiting room wrapped up in a blanket with scorching fever I kept begging her to take me home. I was so embarrassed because I honestly thought I just a gas bubble. Being a college student full time and working full time I would always eat junk so I figured I just had a little gas. Ha if I only knew what was laying ahead of me..
That same night around 2am I was admitted to the hospital because the CT scan showed I had bad inflammation in my ilium. Didn't really know what to think of everything. I had never been in the hospital, ever, and I never really got sick. Everything was still surreal and I felt like I was floating on a cloud.
The next morning I met my doctor who was sweet as apple pie and he told me the results showed I had inflammation and told me all the medicine they had me on and how they needed to do more test to figure out what the inflammation was from. Everyday for the next week and a half they would come into my room and tell me the same thing.. We don't know what you have but we'll keep running tests. I think that part was the scariest. I'm pretty sure they had done every test known to man on me and still nothing could be found. After a week of not eating or drinking anything I broke down. I couldn't handle it anymore, I was scared and confused. The bad part about it is that my mom lives in Romania and she couldn't be by my side. It didn't matter who was there and don't get me wrong I am so very thankful for all my friends who have been there for me, they're absolute blessings. But at that time in my life all I needed was my mom.
After a week of what seemed like an endless hell, my GI doctor came and in and delivered the news. It didn't hit me until he left the room and that's when I broke down and cried and cried. I am a very strong person and I had been very strong throughout all the tests and chaos but by now it was time for me to break down. But we finally got somewhere and I was happy, it was just too much. I got some good news too that if I could eat and hold it down and not be dying of pain I could go home the next few days. Of course I always have the worst luck and ended up throwing up every morning and night for the next few days. They ended up taking my gallbladder out after 16 of being in the hospital. The surgery hurt like hell. And I know it's laproscopic but after being in there for so long and not being able to eat, I had lost all my muscle and fat on my body. I looked like a skeleton walking around. Anyway a few days after the surgery I was discharged and finally got to go home.
Let's just say the journey after the hospital has been hell on earth. First predinosone has to be sent from the devil. It just has to. Dealing with all the side effects was almost not even worth taking it. I became suicidal, had the moon face, acne and all the possible side effects you can have. :ymad: I developed an allergy reaction to Carafate, Flagyl and Cipro. I ended up losing feeling in my toes and bottom of my feet and I have a lot of spider veins now. 6mp ended up killing my liver so we ended up trying Humira once a week. Worked great until I developed an allergic reaction and ended up in the ER, twice. And the second time they gave me a Benadryl shot in my muscle instead of my vein so my arm was twice the normal size and purple. I lost feeling in my forearm and I have a hard lump on it. Since that didn't work, we tried Cimzia. First off it hurts to inject it. I developed bumps under my skin where the site of the injection was and they hurt really bad. My whole stomach turned purple and so did my thighs after we decided to switch it up. Being on Cimzia didn't help at all, it actually took my back to square one. I also had to have an Iron Infusion, a blood transfusion (my doctor still can't figure out where all my blood is going ) and a fistolotomy, which hasn't fixed anything. I have a blown vein from the hospital and an air bubble left in my arm from the surgery and it still hasn't gone away. It hurts very bad especially when it's cold or I work out.
On top of it all, I'm having to deal with everything on my own. My own sister doesn't talk to me because she said me being sick has taken a toll on her and she can't handle it. I do talk to my mom and she's been my strength but she's so far away. It just sucks having to go to school full time, work full time and deal with a disease that you don't know when it's going to hit. People don't understand how hard it is and it gets frustrating. This diagnosis has completely changed my life but I try to remember that others have it way worse and I shouldn't complain. But I do think we all deserve a chance to cry and feel sorry for ourselves even if it's just for a few seconds. I know it makes me feel better.
Sorry for the long story, just wanted to share how it all started. There's more to the story about the pain and all the hardships of this disease but I know you all are familiar with it and it makes me sad to think about it.
God is good tho, He's been my rock and my best friend. I know I can do anything through Him and I've had time when He's carried me and I saw His footsteps in the sand. God bless you all and if there's any way I can be of support to someone, please don't hesitate to ask.
Oh as of right now I'm still on Pred, Flagyl, Cipro, Protonix and B12 shots every week. I feel good. I have bad days and good days and now that school is back in session I keep having bad days, but I will overcome. Much love to all of you!
My name is Mara Jordan and I am from Romania but I live in the United States. I am a junior in college and I am majoring in nursing. I am 22 years old and I am a beginner Crohnie, as I like to call it. I am coming up on my one year anniversary since I got diagnosed with CD and it's actually bittersweet. Everything that has happened a year ago was completely life changing but I'm very thankful I finally got a diagnosis and I'm on the way to feeling better.
On October 2, 2011 I was having a lovely Sunday.. I had gone to church and after I went to lunch at Olive Garden with some friends that were visiting from out of town. We had a lovely time
After I got home from lunch, I took a marvelous Sunday afternoon nap, we all know how lovely those are, and then started studying for my Calculus and Trigonometry tests which were both the next day. I sat there thinking to myself how I wish something would happen so I didn't have to go to class the next day and I would have more time to study. Well be careful what you wish for because you just might get it!! I learned this the hard way. My younger sister who is in college as well decided she wasn't going to go back to her dorm and stay the night with me. God knew what was going on and He has His protective hand on me. Around 6 pm we were goofing around, laughing and being silly when I noticed I was getting really cold and started shaking uncontrollably. I went and put on two pairs of sweatpants, two hoodies and my comforter and turned the heat up to 80 and I was not getting any better. I started getting stomach pains and my fever had reached 104. Of course my sister started freaking out and crying and saying we need to go to the ER, but me being stubborn as horse kept telling her I'm fine. I knew something was really wrong but didn't want to scare her. Things weren't getting any better and by 8 or so I couldn't even walk because of the stomach pains that started a little bit after the fever. Long story short, we ended up going to the hospital. As I sat in the waiting room wrapped up in a blanket with scorching fever I kept begging her to take me home. I was so embarrassed because I honestly thought I just a gas bubble. Being a college student full time and working full time I would always eat junk so I figured I just had a little gas. Ha if I only knew what was laying ahead of me..
That same night around 2am I was admitted to the hospital because the CT scan showed I had bad inflammation in my ilium. Didn't really know what to think of everything. I had never been in the hospital, ever, and I never really got sick. Everything was still surreal and I felt like I was floating on a cloud.
The next morning I met my doctor who was sweet as apple pie and he told me the results showed I had inflammation and told me all the medicine they had me on and how they needed to do more test to figure out what the inflammation was from. Everyday for the next week and a half they would come into my room and tell me the same thing.. We don't know what you have but we'll keep running tests. I think that part was the scariest. I'm pretty sure they had done every test known to man on me and still nothing could be found. After a week of not eating or drinking anything I broke down. I couldn't handle it anymore, I was scared and confused. The bad part about it is that my mom lives in Romania and she couldn't be by my side. It didn't matter who was there and don't get me wrong I am so very thankful for all my friends who have been there for me, they're absolute blessings. But at that time in my life all I needed was my mom.
After a week of what seemed like an endless hell, my GI doctor came and in and delivered the news. It didn't hit me until he left the room and that's when I broke down and cried and cried. I am a very strong person and I had been very strong throughout all the tests and chaos but by now it was time for me to break down. But we finally got somewhere and I was happy, it was just too much. I got some good news too that if I could eat and hold it down and not be dying of pain I could go home the next few days. Of course I always have the worst luck and ended up throwing up every morning and night for the next few days. They ended up taking my gallbladder out after 16 of being in the hospital. The surgery hurt like hell. And I know it's laproscopic but after being in there for so long and not being able to eat, I had lost all my muscle and fat on my body. I looked like a skeleton walking around. Anyway a few days after the surgery I was discharged and finally got to go home.
Let's just say the journey after the hospital has been hell on earth. First predinosone has to be sent from the devil. It just has to. Dealing with all the side effects was almost not even worth taking it. I became suicidal, had the moon face, acne and all the possible side effects you can have. :ymad: I developed an allergy reaction to Carafate, Flagyl and Cipro. I ended up losing feeling in my toes and bottom of my feet and I have a lot of spider veins now. 6mp ended up killing my liver so we ended up trying Humira once a week. Worked great until I developed an allergic reaction and ended up in the ER, twice. And the second time they gave me a Benadryl shot in my muscle instead of my vein so my arm was twice the normal size and purple. I lost feeling in my forearm and I have a hard lump on it. Since that didn't work, we tried Cimzia. First off it hurts to inject it. I developed bumps under my skin where the site of the injection was and they hurt really bad. My whole stomach turned purple and so did my thighs after we decided to switch it up. Being on Cimzia didn't help at all, it actually took my back to square one. I also had to have an Iron Infusion, a blood transfusion (my doctor still can't figure out where all my blood is going
) and a fistolotomy, which hasn't fixed anything. I have a blown vein from the hospital and an air bubble left in my arm from the surgery and it still hasn't gone away. It hurts very bad especially when it's cold or I work out. On top of it all, I'm having to deal with everything on my own. My own sister doesn't talk to me because she said me being sick has taken a toll on her and she can't handle it. I do talk to my mom and she's been my strength but she's so far away.
It just sucks having to go to school full time, work full time and deal with a disease that you don't know when it's going to hit. People don't understand how hard it is and it gets frustrating. This diagnosis has completely changed my life but I try to remember that others have it way worse and I shouldn't complain. But I do think we all deserve a chance to cry and feel sorry for ourselves even if it's just for a few seconds. I know it makes me feel better.Sorry for the long story, just wanted to share how it all started. There's more to the story about the pain and all the hardships of this disease but I know you all are familiar with it and it makes me sad to think about it.
God is good tho, He's been my rock and my best friend. I know I can do anything through Him and I've had time when He's carried me and I saw His footsteps in the sand. God bless you all and if there's any way I can be of support to someone, please don't hesitate to ask.
Oh as of right now I'm still on Pred, Flagyl, Cipro, Protonix and B12 shots every week. I feel good. I have bad days and good days and now that school is back in session I keep having bad days, but I will overcome. Much love to all of you!
