Hi everyone! Allow me to introduce myself before I go on my long rant. My name is Louis and I'm 19 years old and a current freshman in college. Been diagnosed with Crohn's Disease since August of 2008. I've been reading this site a lot over the past few months since I discovered it as I've been going through a very rough time. After a very critical appointment with my GI today I decided it was time to come out of the shadows and join you all!
So here's my story in a nutshell [sorry in advanced if this is super long]. As I said, I was diagnosed in August of 2008, right before I began my sophomore year of high school. Throughout my entire freshman year I was experiencing terrible stomach pains and D and rapidly lost a ton of weight. I was only eating one meal a day and sleeping for the rest of it. Finally during the summer it got so bad that my parents finally took me to see some doctors. Long story short, after some tests and being in the hospital for a week, I left with a diagnosis of Crohn's. I was put on Pentasa and Prednisone [:thumbdown:] and slowly tapered of the Pred for the next few months. I felt absolutely great, I had gotten my life back. I was eating normal and having normal bowel movements and no pain and I felt like a normal person again. I kept up this remission for a good two and a half years.
Then around May of 2011, those horrible symptoms began to rear their ugly head again. I knew what was happening but I was in such denial and I just didn't want to admit it to myself. I had began flaring again. During the summer it was a pretty mild flare so I didn't mention it to anyone hoping it would go away on it's own, but once I started college in the fall things took a turn for the worst. As time went on my symptoms got worse and worse and I was having unbelievable pains and having D 15-20 times a day. I couldn't sleep, I couldn't eat. It was just too painful. I had lost 25 pounds in less than a month. We switched me from a pediatric GI to an adult GI doctor and all he did was switch my Pentasa to Asacol and give me prescription strength immodium. Needless to say this did nothing. It got to the point where I couldn't get out of my bed and was missing all of my classes. Meanwhile I'm living in a dorm room so you can only imagine how much fun that is when your roommate is wondering why you're constantly going to the bathroom and stinking it up. I was admitted to the hospital in November of 2011 and was there for about 3 days. My GI was apparently on vacation so I was seen by the on-call GI who also works in the same office and after being treated by him, I decided to switch to him permanently because I liked his method much better.
Coming out of the hospital I was put only on Entocort. This did nothing for me as well. I decided to move out of my dorm and back home where I could be more comfortable and just commute to school for the spring semester. It took us a month to schedule a colonoscopy and then another month until I actually had it. I had the colonoscopy on January 3rd of 2012 and my doctor told me it was one of the most severe scopes he had ever done. Tons of inflammation and ulceration and evidence of fistulas. It was so inflamed that he couldn't make it all the way through. Before I had this done I was in the most excruciating amount of pain I had ever been in in my life, and I asked if I could be put on any pain meds. After seeing how bad my case was he was shocked that I wasn't on any already [shouldn't you know that? You have a list of my meds...] and happily prescribed me Vicodin. After the colonoscopy he wanted to run a barium enema test so he could get a better look and confirm whether or not I had fistulas. Welp, that was a bust because when I went in for the procedure it was so painful just putting the enema in that I couldn't bear it and couldn't get the test done. My GI then told me at my next appointment that if I agreed to do the test again that he would come down the hospital and sedate me enough to the point where they could still do the test but I wouldn't be knocked out. I agreed, but guess what? He never showed up to the hospital! :ymad: At this point we decided we were done with this doctor.
A week went by and things were not getting any better and after talking to my GP, he advised that I just go to the emergency room. So, I did and was admitted to the hospital for four days. Had a blood transfusion and was pumped up with antibiotics and electrolytes. It was about two weeks ago that I was discharged. Coming out of the hospital I actually felt a million times better and was very hopeful that things would start to turn around. But, I was wrong again. I ran out of my Vicodin on Sunday and had no way to get a refill. Since then I had been in nonstop intense pain and running to the bathroom every two hours. I had no idea that the Vicodin was helping that much. I knew I had to go back to that dreaded GI doctor that blew me off if I wanted anything done. So I called this morning and said I needed to see him ASAP and they fit me in for a 3:30 appointment today.
To make another long story short, we talked for a long long time and he decided to get me started on Remicade and Purinethol. I was actually very happy and RELIEVED that I was finally getting started on some actual strong medication that could actually treat me. I've pretty much been on no legit working medication for 5 months now. Tomorrow I'm having the TB test done and some blood work done and should have the test results of the TB test by friday, and from there he says I'll be started on the Remicade ASAP. As for the Purinethol, I'll be starting 50 MG a day by either Thursday or Friday. Also, since I've built up a tolerance to Vicodin, he has bumped me up to Oxycontin for pain, which scares me a little... :shifty-t:
While I'm extremely happy that I'm finally on some good medication, I am a bit overwhelmed. From someone who's pretty much only been on Pentasa and steroids for Crohn's, I have no idea what it's like to be on these big-league medications. I'm looking forward to it though. I'm looking forward to finally getting better and getting my life back! I've read so many good things about both of these medications so I'm staying very positive despite all the risks involved in them. I'm hopeful that my future will be much happier than it's been for the past 9 months or so. But we'll just have to wait and see!
I'm really glad to finally be on this forum and I look forward to keeping you guys updated and hopefully getting to know some of you! You all seem like a great and wonderful group of people. If you took the time to read all of this then thank you so much! I've left a ton of other small details out so if there's any questions feel free to ask. And if there's any advice you could give about these meds I would be very thankful :ysmile:
So here's my story in a nutshell [sorry in advanced if this is super long]. As I said, I was diagnosed in August of 2008, right before I began my sophomore year of high school. Throughout my entire freshman year I was experiencing terrible stomach pains and D and rapidly lost a ton of weight. I was only eating one meal a day and sleeping for the rest of it. Finally during the summer it got so bad that my parents finally took me to see some doctors. Long story short, after some tests and being in the hospital for a week, I left with a diagnosis of Crohn's. I was put on Pentasa and Prednisone [:thumbdown:] and slowly tapered of the Pred for the next few months. I felt absolutely great, I had gotten my life back. I was eating normal and having normal bowel movements and no pain and I felt like a normal person again. I kept up this remission for a good two and a half years.
Then around May of 2011, those horrible symptoms began to rear their ugly head again. I knew what was happening but I was in such denial and I just didn't want to admit it to myself. I had began flaring again. During the summer it was a pretty mild flare so I didn't mention it to anyone hoping it would go away on it's own, but once I started college in the fall things took a turn for the worst. As time went on my symptoms got worse and worse and I was having unbelievable pains and having D 15-20 times a day. I couldn't sleep, I couldn't eat. It was just too painful. I had lost 25 pounds in less than a month. We switched me from a pediatric GI to an adult GI doctor and all he did was switch my Pentasa to Asacol and give me prescription strength immodium. Needless to say this did nothing. It got to the point where I couldn't get out of my bed and was missing all of my classes. Meanwhile I'm living in a dorm room so you can only imagine how much fun that is when your roommate is wondering why you're constantly going to the bathroom and stinking it up. I was admitted to the hospital in November of 2011 and was there for about 3 days. My GI was apparently on vacation so I was seen by the on-call GI who also works in the same office and after being treated by him, I decided to switch to him permanently because I liked his method much better.
Coming out of the hospital I was put only on Entocort. This did nothing for me as well. I decided to move out of my dorm and back home where I could be more comfortable and just commute to school for the spring semester. It took us a month to schedule a colonoscopy and then another month until I actually had it. I had the colonoscopy on January 3rd of 2012 and my doctor told me it was one of the most severe scopes he had ever done. Tons of inflammation and ulceration and evidence of fistulas. It was so inflamed that he couldn't make it all the way through. Before I had this done I was in the most excruciating amount of pain I had ever been in in my life, and I asked if I could be put on any pain meds. After seeing how bad my case was he was shocked that I wasn't on any already [shouldn't you know that? You have a list of my meds...] and happily prescribed me Vicodin. After the colonoscopy he wanted to run a barium enema test so he could get a better look and confirm whether or not I had fistulas. Welp, that was a bust because when I went in for the procedure it was so painful just putting the enema in that I couldn't bear it and couldn't get the test done. My GI then told me at my next appointment that if I agreed to do the test again that he would come down the hospital and sedate me enough to the point where they could still do the test but I wouldn't be knocked out. I agreed, but guess what? He never showed up to the hospital! :ymad: At this point we decided we were done with this doctor.
A week went by and things were not getting any better and after talking to my GP, he advised that I just go to the emergency room. So, I did and was admitted to the hospital for four days. Had a blood transfusion and was pumped up with antibiotics and electrolytes. It was about two weeks ago that I was discharged. Coming out of the hospital I actually felt a million times better and was very hopeful that things would start to turn around. But, I was wrong again. I ran out of my Vicodin on Sunday and had no way to get a refill. Since then I had been in nonstop intense pain and running to the bathroom every two hours. I had no idea that the Vicodin was helping that much. I knew I had to go back to that dreaded GI doctor that blew me off if I wanted anything done. So I called this morning and said I needed to see him ASAP and they fit me in for a 3:30 appointment today.
To make another long story short, we talked for a long long time and he decided to get me started on Remicade and Purinethol. I was actually very happy and RELIEVED that I was finally getting started on some actual strong medication that could actually treat me. I've pretty much been on no legit working medication for 5 months now. Tomorrow I'm having the TB test done and some blood work done and should have the test results of the TB test by friday, and from there he says I'll be started on the Remicade ASAP. As for the Purinethol, I'll be starting 50 MG a day by either Thursday or Friday. Also, since I've built up a tolerance to Vicodin, he has bumped me up to Oxycontin for pain, which scares me a little... :shifty-t:
While I'm extremely happy that I'm finally on some good medication, I am a bit overwhelmed. From someone who's pretty much only been on Pentasa and steroids for Crohn's, I have no idea what it's like to be on these big-league medications. I'm looking forward to it though. I'm looking forward to finally getting better and getting my life back! I've read so many good things about both of these medications so I'm staying very positive despite all the risks involved in them. I'm hopeful that my future will be much happier than it's been for the past 9 months or so. But we'll just have to wait and see!
I'm really glad to finally be on this forum and I look forward to keeping you guys updated and hopefully getting to know some of you! You all seem like a great and wonderful group of people. If you took the time to read all of this then thank you so much! I've left a ton of other small details out so if there's any questions feel free to ask. And if there's any advice you could give about these meds I would be very thankful :ysmile:
