I was diagnosed last summer with crohn's colitis following a referral to a GI and a colonoscopy and endoscopy. I had been admitted to hospital earlier in the year and after testing for a huge range of illnesses was told it was probably a one off. Everyone told me a diagnosis was good but it was a case of "thanks but can I have something you can cure with a tablet?". Anyway, after reading a lot about the disease, I was hoping I would be one of the lucky few who lived without any problems (MAJOR denial).
My crohn's was flaring slightly when I had my first GI appointment and was put on azathioprine. After a couple of weeks I started to feel smug because I had no side effects and thought I was in the clear and then I started to throw up big time, developed skin nodules, sore eyes, fever. To cut a long story short, I ended up in hospital for 2 weeks with a big flare on IV steriods, plus a diagnosis of pyoderma gangrenosum (yay, another autoimmune disease!). My small intestine was very inflamed - gave the kids a laugh as lying down on the bed I looked like one of those poor whales which had landed on a beach by mistake!
Now out of hospital, I am on prednisolone (have every side effect known to man) and mercaptopurine (no throwing up from this) and back at home trying to get back to normality with my husband and children and hoping to get back to work soon.
The next step is to hope the steroids sort out the inflammation and the mercaptopurine starts to kick in. My GI appointment is in 3 weeks when I will find out the small bowel MRI scan results and pray he doesn't start talking about surgery. I think I haven't quite got rid of that denial yet?
It's good to write this all down to offload on a forum where people have a shared interest as I think I am at risk of boring my friends and family even though it feels like the centre of my world at the moment. When someone asks me how I am feeling I think I can't keep telling them the truth as it sounds really miserable and they expect me to say I am getting better at some point.
To finish on a happy note, I love this joke one poster has on their profile:
My bum is broken - it has a big crack in it :blush:
My crohn's was flaring slightly when I had my first GI appointment and was put on azathioprine. After a couple of weeks I started to feel smug because I had no side effects and thought I was in the clear and then I started to throw up big time, developed skin nodules, sore eyes, fever. To cut a long story short, I ended up in hospital for 2 weeks with a big flare on IV steriods, plus a diagnosis of pyoderma gangrenosum (yay, another autoimmune disease!). My small intestine was very inflamed - gave the kids a laugh as lying down on the bed I looked like one of those poor whales which had landed on a beach by mistake!
Now out of hospital, I am on prednisolone (have every side effect known to man) and mercaptopurine (no throwing up from this) and back at home trying to get back to normality with my husband and children and hoping to get back to work soon.
The next step is to hope the steroids sort out the inflammation and the mercaptopurine starts to kick in. My GI appointment is in 3 weeks when I will find out the small bowel MRI scan results and pray he doesn't start talking about surgery. I think I haven't quite got rid of that denial yet?
It's good to write this all down to offload on a forum where people have a shared interest as I think I am at risk of boring my friends and family even though it feels like the centre of my world at the moment. When someone asks me how I am feeling I think I can't keep telling them the truth as it sounds really miserable and they expect me to say I am getting better at some point.
To finish on a happy note, I love this joke one poster has on their profile:
My bum is broken - it has a big crack in it :blush:
