Hey everyone,
I'm really glad that I found this forum. I've been reading over the posts for about a day or so and for the first time this year I felt like I hearing from people that TRUELY understood what I am going through. As much as my family and friends may try to empathize, I just don't think it's possible to get it unless you've gone through it.
Anyway, this has been has been by far the worst year of my life (and trust me when I say that although I'm young I had some truely crappy years before this one). It all started back in February. I was recovering from shoulder surgery and just starting to feel better. Then one day I woke up with my stomach kind of hurting. It went from about a 3/10 to a 10/10 in about 4 hours. I passed out in my house leaving to go to the ER because the pain was so severe. My mom called the paramedics who transported me to ER, but on the way to hospital I went into shock and stopped breathing. Luckily they got me breathing again, but I was in really bad shape.
I was hospitalized and ended up spending 2 weeks in the hospital. While I was there they did a colonscopy (I was throwing up, had bloody diarrhea). They were only able to do a sigmoidoscopy because it hurt so much. They told me that I would so sedated that I wouldn't care and wouldn't remember anything afterwards, but it hurt so bad that it took three nurses to restrain me and I still remember everything. It turned out that I had really bad ulcers in my colon that they assumed ran all throughout my stomach.
I had really crappy care in the hospital and they assumed that I was a pain killer addict (when in fact I actually really needed pain control), so I couldn't get up and walk like they wanted me to. As a result I developed a DVT (blood clot) in my leg that I left the hospital with because they thought it was a pulled muscle.
Because of their diagnoses I didn't get it checked out for 3 weeks by which time it had turned into a Pulmonary Embolism. So I was hospitalized again and put on Coumadin. By the time that I left the hospital again between my stomach and my blood clots I could barely walk a hundred feet without having to rest.
I got stronger, but my stomach hasn't gotten much better. It was initially diagnosed as ulcerative colitis, but now the pain has spread throughout my lower intestine and we are looking at the possibility of Crohn's disease.
My pain is almost never lower than a 5/10 (it usually hits 7 for at least a quarter to half of the day) and within the last month and half I have had at least one day a week where it hits 8-9 for most of the day (I can't even stand up straight on those days).
Sometimes I feel like the pain is never going to stop and I'm never to going find anything to give me any relief or a break. It's been really hard because I've essentially had to stop living my life. Most of the time I'm too tired or in too much pain to go hang out with friends (and it's hard because they don't get what I'm going through at all) and most of the activities I used to enjoy doing I've had to stop because they're painful now-I can't do anything active without pain. I feel like I lost a big chunk of my life and since there's no cure for UC or Crohn's I'm never going to get it back, which is really difficult to cope with.
My parents are supporting me and I know that things could be worse, but sometimes it's hard to remember that. And it doesn't help that I live in a small town where the doctors don't really know what to do. I do have a appointment with a top specialist in 3 weeks (but that's after waiting 3 months to see him).
Any advice from anyone?
I'm really glad that I found this forum. I've been reading over the posts for about a day or so and for the first time this year I felt like I hearing from people that TRUELY understood what I am going through. As much as my family and friends may try to empathize, I just don't think it's possible to get it unless you've gone through it.
Anyway, this has been has been by far the worst year of my life (and trust me when I say that although I'm young I had some truely crappy years before this one). It all started back in February. I was recovering from shoulder surgery and just starting to feel better. Then one day I woke up with my stomach kind of hurting. It went from about a 3/10 to a 10/10 in about 4 hours. I passed out in my house leaving to go to the ER because the pain was so severe. My mom called the paramedics who transported me to ER, but on the way to hospital I went into shock and stopped breathing. Luckily they got me breathing again, but I was in really bad shape.
I was hospitalized and ended up spending 2 weeks in the hospital. While I was there they did a colonscopy (I was throwing up, had bloody diarrhea). They were only able to do a sigmoidoscopy because it hurt so much. They told me that I would so sedated that I wouldn't care and wouldn't remember anything afterwards, but it hurt so bad that it took three nurses to restrain me and I still remember everything. It turned out that I had really bad ulcers in my colon that they assumed ran all throughout my stomach.
I had really crappy care in the hospital and they assumed that I was a pain killer addict (when in fact I actually really needed pain control), so I couldn't get up and walk like they wanted me to. As a result I developed a DVT (blood clot) in my leg that I left the hospital with because they thought it was a pulled muscle.
Because of their diagnoses I didn't get it checked out for 3 weeks by which time it had turned into a Pulmonary Embolism. So I was hospitalized again and put on Coumadin. By the time that I left the hospital again between my stomach and my blood clots I could barely walk a hundred feet without having to rest.
I got stronger, but my stomach hasn't gotten much better. It was initially diagnosed as ulcerative colitis, but now the pain has spread throughout my lower intestine and we are looking at the possibility of Crohn's disease.
My pain is almost never lower than a 5/10 (it usually hits 7 for at least a quarter to half of the day) and within the last month and half I have had at least one day a week where it hits 8-9 for most of the day (I can't even stand up straight on those days).
Sometimes I feel like the pain is never going to stop and I'm never to going find anything to give me any relief or a break. It's been really hard because I've essentially had to stop living my life. Most of the time I'm too tired or in too much pain to go hang out with friends (and it's hard because they don't get what I'm going through at all) and most of the activities I used to enjoy doing I've had to stop because they're painful now-I can't do anything active without pain. I feel like I lost a big chunk of my life and since there's no cure for UC or Crohn's I'm never going to get it back, which is really difficult to cope with.
My parents are supporting me and I know that things could be worse, but sometimes it's hard to remember that. And it doesn't help that I live in a small town where the doctors don't really know what to do. I do have a appointment with a top specialist in 3 weeks (but that's after waiting 3 months to see him).
Any advice from anyone?
