Hello lovely people!
I was diagnosed with Crohn's disease last month and am so pleased to have now discovered this forum. It answers so many of the questions I've been asking myself over the past month and is great to know I'm not alone.
Thinking back, I've had problems with my stomach (cramps for no reason, constipation, anal fissures) for a while now but it was back in February 2012 when I started with constant tummy ache in my lower right abdomen with severe waves of crippling pain rising up my stomach at intervals throughout the day that it all really began.
The pain gradually got worse over a few weeks so I went to see my GP who tried various antibiotics that had no effect. At first he thought I could be pregnant! Then he was convinced I had appendicitis or a grumbling appendix and admitted me to hospital on that basis. An ultrasound scan revealed a thickened ileum which was confirmed by a CT scan. I was put on IV antibiotics and prednisolone and told that it was likely I had Crohn's disease. Three days later, I was feeling much better and was discharged by one of the gastro consultants with a weaning course of pred over 8 weeks and an appointment with him for four weeks time and a colonoscopy scheduled for 6-8 weeks.
A few days later, and I was back in hospital for a week with terrible pain again. They put me back on IV pred and (much to the reluctance of my gastro consultant, I later found out) carried out a colonoscopy towards the end of the week. Unfortunately, they weren't able to get into my small bowel - I was absolutely gutted as I really wanted a confirmed diagnosis and thought this would be it. Thankfully, all seems to be ok with my large bowel so I'm grateful for that. A week later and I was discharged again with the same 8 week weaning course of pred and an appointment for a capsule endoscopy a couple of weeks later.
Luckily for me, the gastro consultant I'd seen in hospital (- he seems very switched on and knowledgable) was the one who saw me before the procedure and recommended I do a patency test, given my symptoms and what they were trying to diagnose. I'm so glad I did as the patency capsule got stuck - rather that than the actual camera itself! Despite that, I was so disappointed not to have been able to do the test and get some more clarification on what was going on in there.
Since then, I've had a full appointment with the gastro consultant who has been brilliant. It was so good to see someone who was actually willing to sit down with me and explain what had been done and why (- he didn't agree with half of what the other doctors had recommended!!), how he could be 99.9% sure I have Crohn's disease and what the next steps were.
He told me I have moderate to severe Crohn's that is affecting about 15cm of my small bowel and has put me on 125mg of azathioprine which I've started on top of the pred I'm nearly off now.
Although I'm sad/confused/anxious/frustrated I have Crohn's, I feel better now knowing that I'm being seen by someone I trust and who seems to know his stuff. I'm also lucky enough to have access to a specialist nurse I can contact any time with any questions I have. And now I've found this forum too. The relief support like this can offer should not be underestimated.
Well, I've rambled for far too long! I promise not all my posts will be this long! It's just great to be able to talk about it with people who understand what I'm going through.
I was diagnosed with Crohn's disease last month and am so pleased to have now discovered this forum. It answers so many of the questions I've been asking myself over the past month and is great to know I'm not alone.
Thinking back, I've had problems with my stomach (cramps for no reason, constipation, anal fissures) for a while now but it was back in February 2012 when I started with constant tummy ache in my lower right abdomen with severe waves of crippling pain rising up my stomach at intervals throughout the day that it all really began.
The pain gradually got worse over a few weeks so I went to see my GP who tried various antibiotics that had no effect. At first he thought I could be pregnant! Then he was convinced I had appendicitis or a grumbling appendix and admitted me to hospital on that basis. An ultrasound scan revealed a thickened ileum which was confirmed by a CT scan. I was put on IV antibiotics and prednisolone and told that it was likely I had Crohn's disease. Three days later, I was feeling much better and was discharged by one of the gastro consultants with a weaning course of pred over 8 weeks and an appointment with him for four weeks time and a colonoscopy scheduled for 6-8 weeks.
A few days later, and I was back in hospital for a week with terrible pain again. They put me back on IV pred and (much to the reluctance of my gastro consultant, I later found out) carried out a colonoscopy towards the end of the week. Unfortunately, they weren't able to get into my small bowel - I was absolutely gutted as I really wanted a confirmed diagnosis and thought this would be it. Thankfully, all seems to be ok with my large bowel so I'm grateful for that. A week later and I was discharged again with the same 8 week weaning course of pred and an appointment for a capsule endoscopy a couple of weeks later.
Luckily for me, the gastro consultant I'd seen in hospital (- he seems very switched on and knowledgable) was the one who saw me before the procedure and recommended I do a patency test, given my symptoms and what they were trying to diagnose. I'm so glad I did as the patency capsule got stuck - rather that than the actual camera itself! Despite that, I was so disappointed not to have been able to do the test and get some more clarification on what was going on in there.
Since then, I've had a full appointment with the gastro consultant who has been brilliant. It was so good to see someone who was actually willing to sit down with me and explain what had been done and why (- he didn't agree with half of what the other doctors had recommended!!), how he could be 99.9% sure I have Crohn's disease and what the next steps were.
He told me I have moderate to severe Crohn's that is affecting about 15cm of my small bowel and has put me on 125mg of azathioprine which I've started on top of the pred I'm nearly off now.
Although I'm sad/confused/anxious/frustrated I have Crohn's, I feel better now knowing that I'm being seen by someone I trust and who seems to know his stuff. I'm also lucky enough to have access to a specialist nurse I can contact any time with any questions I have. And now I've found this forum too. The relief support like this can offer should not be underestimated.
Well, I've rambled for far too long! I promise not all my posts will be this long! It's just great to be able to talk about it with people who understand what I'm going through.
