- Joined
- Sep 11, 2010
- Messages
- 77
Hey everyone,
My name's John, found this site last night whilst doing my monthly check for a miracle cure
I didn't find the cure but this place is the next best thing! You guys are great. I've spent pretty much all day reading posts so I thought I should say hi.
My story goes back 20 years, When I was 7 I was on holiday with my parents in Rhodes when I got an abscess on my backside. All I can really remember was the long flight home sat on a rubber ring lol. After going in and out of hospital about 5 times with these stoopid abscesses they gave me a diagnosis. Crohn's. It didn't affect me too much then, all I remember is having to take lots of these little red pills to stop my gut ache. Little did I know those little red pills were packing one hell of a punch!
Then I had my first real flare up at 11. The worst part about that was having to go to school with a whining back pack pumping me full of elemental feed through my nose and not being able to eat anything for 2 months. From that day on I was known as "that kid who's always ill".
At 18 I went in for my first surgery, a large bowel resection. That went well and I was in remission for about 5 years taking mesalazine to keep things under control Then I started getting this weird abdo pain, it was weird cos it didn't feel like crohn's pain. I went to the doc who lined me up with a good old c/scopy which I'd had plenty of already. The results of that showed a stricture where scarring from surgery had narrowed my bowel and I was all blocked up causing the pain. The cure for that was a low res diet. I reckon that would be the ultimate weight loss diet! It makes food so boring that you completely loose all interest in it. Not great for me as I've struggled to stay above 8 stone my whole life (I'm 5'11'' btw so at 8 stone I'm practically invisible when stood sideways on).
That worked for a while, which brings me up to now when the crohn's has more of a strangle hold on than ever before. 2 years ago I had a mild flare up, doc's put me on some more of those little red pills that I now know to be preds. The flare up only got worse tho until I was admitted in feb '09 with sever abdo pain. after a CT scan, barium x-ray, c/scopy, e/scopy, MRI scan, ultrasound and about 4 gallons of blood for testing I got a result "your crohn's is pretty bad" Really!?! I could've told you that without having to be some kind of hospital crash test dummy lol. They kept me on the preds and said review in 3 months. In that time I lost my job thanks to another understanding employer. Then things just started to spiral down fast.
12 months later after trying every drug in the crohn's arsenal I was back in for a right hemi colectomy in May this year. It didn't go great, they found a lot more disease than they thought was gonna be there. Now 4 months on, I'm on aza and really struggling to see the light at the end of the tunnel. I've always liked to think of myself as pretty strong with all this and tried to just take it in my stride. But now it's really wearing me down and I just don't know what to do any more. I've barely got the energy to get up in the mornings, when I do have the energy my mind is so erratic that I don't know if I’m coming or going. But!! Today was a good day! I found some people who are in the same boat so now I think the boat may stay afloat.
I think I've gone on for long enough now but it's good to know that if anyone reads it, they'll probably understand it.
My name's John, found this site last night whilst doing my monthly check for a miracle cure
I didn't find the cure but this place is the next best thing! You guys are great. I've spent pretty much all day reading posts so I thought I should say hi.My story goes back 20 years, When I was 7 I was on holiday with my parents in Rhodes when I got an abscess on my backside. All I can really remember was the long flight home sat on a rubber ring lol. After going in and out of hospital about 5 times with these stoopid abscesses they gave me a diagnosis. Crohn's. It didn't affect me too much then, all I remember is having to take lots of these little red pills to stop my gut ache. Little did I know those little red pills were packing one hell of a punch!
Then I had my first real flare up at 11. The worst part about that was having to go to school with a whining back pack pumping me full of elemental feed through my nose and not being able to eat anything for 2 months. From that day on I was known as "that kid who's always ill".
At 18 I went in for my first surgery, a large bowel resection. That went well and I was in remission for about 5 years taking mesalazine to keep things under control Then I started getting this weird abdo pain, it was weird cos it didn't feel like crohn's pain. I went to the doc who lined me up with a good old c/scopy which I'd had plenty of already. The results of that showed a stricture where scarring from surgery had narrowed my bowel and I was all blocked up causing the pain. The cure for that was a low res diet. I reckon that would be the ultimate weight loss diet! It makes food so boring that you completely loose all interest in it. Not great for me as I've struggled to stay above 8 stone my whole life (I'm 5'11'' btw so at 8 stone I'm practically invisible when stood sideways on).
That worked for a while, which brings me up to now when the crohn's has more of a strangle hold on than ever before. 2 years ago I had a mild flare up, doc's put me on some more of those little red pills that I now know to be preds. The flare up only got worse tho until I was admitted in feb '09 with sever abdo pain. after a CT scan, barium x-ray, c/scopy, e/scopy, MRI scan, ultrasound and about 4 gallons of blood for testing I got a result "your crohn's is pretty bad" Really!?! I could've told you that without having to be some kind of hospital crash test dummy lol. They kept me on the preds and said review in 3 months. In that time I lost my job thanks to another understanding employer. Then things just started to spiral down fast.
12 months later after trying every drug in the crohn's arsenal I was back in for a right hemi colectomy in May this year. It didn't go great, they found a lot more disease than they thought was gonna be there. Now 4 months on, I'm on aza and really struggling to see the light at the end of the tunnel. I've always liked to think of myself as pretty strong with all this and tried to just take it in my stride. But now it's really wearing me down and I just don't know what to do any more. I've barely got the energy to get up in the mornings, when I do have the energy my mind is so erratic that I don't know if I’m coming or going. But!! Today was a good day! I found some people who are in the same boat so now I think the boat may stay afloat.
I think I've gone on for long enough now
but it's good to know that if anyone reads it, they'll probably understand it.
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