- Joined
- Sep 22, 2010
- Messages
- 28
Hi! So this is my story.
August, 2009, my epstein barr virus levels shot up and I basically went through all fall experiencing the horrible mono. Night sweats about every night. Some so bad that I would have to take a shower or change my cloths more than once. But I would wake up in the morning feeling 100%. Once 10am-11am came around, I was ready to drop dead. Before that, my pediatrician didn't know what was wrong with me, the specialist physician he sent me to didn't know what was wrong with me, so I went to a hematologist who figured out my elevated EBV levels. As well there was indication in my blood of inflammation, severe anemia, and high white blood count.
So went and experienced the horrible CT scan and liquid barium. Did I mention how horrible the liquid barium is? lol Anyway, the CT scan was only on my upper body. It showed that my liver and spleen were both enlarged. Not satisfied with this, he sent me to a GI doc. So here comes the sad part, my mom intervenes and changes my GI to a different GI doc. The same doc that treated my dad for his colitis.
Well anyway, he scheduled me for an colonoscopy and endoscopy. Boom, found lots of blooding and crohn's in the colon but nothing in my stomach or throat. Sent me to get more liquid barium and take pictures of my small intestine and found crohn's there as well. At that time, my IBV levels were still high so he couldn't start me on the immuran or stronger meds. He started me on pentasa, that never worked, and told me to keep on it cause he didn't want to give up on it. He then gave me entocort which we all know is really expensive. (The nurse told me that america is getting a generic version soon that is gonna be really cheap. She said within a year.) Well, the entocort only took an edge off of the pain but slowly stopped working.
Odd thing though, because I got the colonoscopy and endoscopy, I really didn't have any pain. After the procedure though, I really went down hill in massive pain. Sometimes the pain was so bad I'd have to pull over to the side of the road and wait it out. Cops sometimes think your dying. lol, took me a long time to explain to a cop that its crohn's and normal.
Well, once my EBV levels went down, my GI doc gave me the imuran 50mg a day. I didn't last very long on that. The first time (yes, there's more than one try lol) I got about five blood clots in my left leg, two in my right, my knees felt severely bruised between the joints, bad fever, and bad lower back pain. This was maybe a week before finals! So I was in big trouble.
Well, I was stupid and went to my blood doc instead of going to my GI doc. My blood doc labeled it as an infection and took me off the imuran. Next GI appointment, went back on the imuran. Then knees started to hurt again and felt like I was getting sick. So off I went again but this time, I went to my GI doc.
Now here's the funny thing, my GI wanted to put me on it again. Funny, right? So anyway, said its time to move to the next step and here I am, waiting for my october 4th (2010) appointment for remicade.
I'm not in pain anymore. Its been like that for a month or 2 now but have still been getting diarrhea/loose stools and things I call "painless flares" since they're like flares but without the pain.
Well, that pretty much sums it up.
August, 2009, my epstein barr virus levels shot up and I basically went through all fall experiencing the horrible mono. Night sweats about every night. Some so bad that I would have to take a shower or change my cloths more than once. But I would wake up in the morning feeling 100%. Once 10am-11am came around, I was ready to drop dead. Before that, my pediatrician didn't know what was wrong with me, the specialist physician he sent me to didn't know what was wrong with me, so I went to a hematologist who figured out my elevated EBV levels. As well there was indication in my blood of inflammation, severe anemia, and high white blood count.
So went and experienced the horrible CT scan and liquid barium. Did I mention how horrible the liquid barium is? lol Anyway, the CT scan was only on my upper body. It showed that my liver and spleen were both enlarged. Not satisfied with this, he sent me to a GI doc. So here comes the sad part, my mom intervenes and changes my GI to a different GI doc. The same doc that treated my dad for his colitis.
Well anyway, he scheduled me for an colonoscopy and endoscopy. Boom, found lots of blooding and crohn's in the colon but nothing in my stomach or throat. Sent me to get more liquid barium and take pictures of my small intestine and found crohn's there as well. At that time, my IBV levels were still high so he couldn't start me on the immuran or stronger meds. He started me on pentasa, that never worked, and told me to keep on it cause he didn't want to give up on it. He then gave me entocort which we all know is really expensive. (The nurse told me that america is getting a generic version soon that is gonna be really cheap. She said within a year.) Well, the entocort only took an edge off of the pain but slowly stopped working.
Odd thing though, because I got the colonoscopy and endoscopy, I really didn't have any pain. After the procedure though, I really went down hill in massive pain. Sometimes the pain was so bad I'd have to pull over to the side of the road and wait it out. Cops sometimes think your dying. lol, took me a long time to explain to a cop that its crohn's and normal.
Well, once my EBV levels went down, my GI doc gave me the imuran 50mg a day. I didn't last very long on that. The first time (yes, there's more than one try lol) I got about five blood clots in my left leg, two in my right, my knees felt severely bruised between the joints, bad fever, and bad lower back pain. This was maybe a week before finals! So I was in big trouble.
Well, I was stupid and went to my blood doc instead of going to my GI doc. My blood doc labeled it as an infection and took me off the imuran. Next GI appointment, went back on the imuran. Then knees started to hurt again and felt like I was getting sick. So off I went again but this time, I went to my GI doc.Now here's the funny thing, my GI wanted to put me on it again. Funny, right? So anyway, said its time to move to the next step and here I am, waiting for my october 4th (2010) appointment for remicade.
I'm not in pain anymore. Its been like that for a month or 2 now but have still been getting diarrhea/loose stools and things I call "painless flares" since they're like flares but without the pain.
Well, that pretty much sums it up.
