My Story...
My stomach problems started in my mid 20s. I spent a night in hospital with suspected Appendicitis after having abdominal pain and vomiting, but it was put down to food poisoning. But pain persisted, so eventually the doctor sent me for a gastroscopy (but curiously not a colonoscopy), which didn't show anything. I was then told "IBS" with a bit of a shrug, and given some anti-spasmodic medicine that didn't seem to make any difference.
And that's largely how things stayed for about 15 years. It would get bad every now and again, but for the most part I just had fairly irregular BMs and some mild pain.
But then when I was in my early 40s things seemed to be getting worse. The symptoms were more frequent, I'd had several instances of vomiting, and I noticed my abdomen seemed to be swelling and gurgling a lot - not "bloating", but actually visibly swelling up for a few seconds and going back down. But I put it down to stress; I was having a miserable time at work so that seemed reasonable. I also began to lose weight, but as I was walking a couple of miles a day as part of taking the train to work, I assumed that was a good thing.
But a year later and it really was affecting me every day and I was skipping evening meals more often than not. By then I'd left my job and was unemployed, so again I thought stress, and once I got the rest of my life on track my health would improve. Well I did, and it didn't. Finally unable to ignore the way my jeans were constantly falling down I went to see the doctor.
The doctor did a blood test, which showed I was anemic, ordered an ultrasound scan and referred me to a GI consultant as a possible cancer patient. This all got a bit scary as I'd had a cousin die of stomach cancer at about the same age, and as is often the case he was only diagnosed when it was already far too late.
But at least that meant seeing the specialist quite quickly - the NHS can move fast when it wants to. The scan showed nothing, phew, and he made arrangements for me to have a gastroscopy + colonoscopy, which would include some biopsies to check for any sign of cancer. That came quite quickly, thanks to a cancellation, but this is where things went a bit wrong as despite them saying 3 weeks to get biopsy results it took 2 months and a lot of phone calls for me to them to tell me anything. Bloody NHS. But finally I found out no signs of malignancy, but I had some scarring and signs of inflamation around the terminal ileum.
Another 3 month wait to see the consultant again, although this time I saw the junior who did actually explain everything quite well, but her comment was "you're not quite right are you?". She then ordered a CT scan of my small bowel.
So CT scan, and another 3 month wait, and finally they had an answer. Apparently it was clear as day that I had a thickened and inflamed portion of my terminal ileum in keeping with Crohn's disease. He suggested that at this stage drugs were unlikely to work and the best option was surgery to remove that portion.
So now I'm waiting for the surgery. Despite it being done privately, it's still been a much longer wait than I would have liked (and was promised by the GI). I'm now like the kid waiting for Christmas: counting down the days (12) and unable to think about anything else. I've really been neglecting work and friends and family, and pinning all my hopes on this solving all my problems. Which I'm sure it won't, at least not forever, but hopefully will make a big difference for a while. I'm down to about 9 stone (that's 126lbs for Americans), and as a 6 foot male look seriously emaciated, and feel ridiculously weak and tired a lot of the time.
What seems pretty clear is that my "IBS" was probably Crohn's all along, but the doctors at the time didn't bother to look hard enough. Thinking back over the years there were definitely periods where I was tired a lot, where I was unable to concentrate, and where I'd generally feel unwell which certainly had an effect. If only I'd known I wonder how different things might have been.
Reading forums such as these and it's obvious there are a lot of people worse off than me. So you have my sympathy.
:ghug:
My stomach problems started in my mid 20s. I spent a night in hospital with suspected Appendicitis after having abdominal pain and vomiting, but it was put down to food poisoning. But pain persisted, so eventually the doctor sent me for a gastroscopy (but curiously not a colonoscopy), which didn't show anything. I was then told "IBS" with a bit of a shrug, and given some anti-spasmodic medicine that didn't seem to make any difference.
And that's largely how things stayed for about 15 years. It would get bad every now and again, but for the most part I just had fairly irregular BMs and some mild pain.
But then when I was in my early 40s things seemed to be getting worse. The symptoms were more frequent, I'd had several instances of vomiting, and I noticed my abdomen seemed to be swelling and gurgling a lot - not "bloating", but actually visibly swelling up for a few seconds and going back down. But I put it down to stress; I was having a miserable time at work so that seemed reasonable. I also began to lose weight, but as I was walking a couple of miles a day as part of taking the train to work, I assumed that was a good thing.
But a year later and it really was affecting me every day and I was skipping evening meals more often than not. By then I'd left my job and was unemployed, so again I thought stress, and once I got the rest of my life on track my health would improve. Well I did, and it didn't. Finally unable to ignore the way my jeans were constantly falling down I went to see the doctor.
The doctor did a blood test, which showed I was anemic, ordered an ultrasound scan and referred me to a GI consultant as a possible cancer patient. This all got a bit scary as I'd had a cousin die of stomach cancer at about the same age, and as is often the case he was only diagnosed when it was already far too late.
But at least that meant seeing the specialist quite quickly - the NHS can move fast when it wants to. The scan showed nothing, phew, and he made arrangements for me to have a gastroscopy + colonoscopy, which would include some biopsies to check for any sign of cancer. That came quite quickly, thanks to a cancellation, but this is where things went a bit wrong as despite them saying 3 weeks to get biopsy results it took 2 months and a lot of phone calls for me to them to tell me anything. Bloody NHS. But finally I found out no signs of malignancy, but I had some scarring and signs of inflamation around the terminal ileum.
Another 3 month wait to see the consultant again, although this time I saw the junior who did actually explain everything quite well, but her comment was "you're not quite right are you?". She then ordered a CT scan of my small bowel.
So CT scan, and another 3 month wait, and finally they had an answer. Apparently it was clear as day that I had a thickened and inflamed portion of my terminal ileum in keeping with Crohn's disease. He suggested that at this stage drugs were unlikely to work and the best option was surgery to remove that portion.
So now I'm waiting for the surgery. Despite it being done privately, it's still been a much longer wait than I would have liked (and was promised by the GI). I'm now like the kid waiting for Christmas: counting down the days (12) and unable to think about anything else. I've really been neglecting work and friends and family, and pinning all my hopes on this solving all my problems. Which I'm sure it won't, at least not forever, but hopefully will make a big difference for a while. I'm down to about 9 stone (that's 126lbs for Americans), and as a 6 foot male look seriously emaciated, and feel ridiculously weak and tired a lot of the time.
What seems pretty clear is that my "IBS" was probably Crohn's all along, but the doctors at the time didn't bother to look hard enough. Thinking back over the years there were definitely periods where I was tired a lot, where I was unable to concentrate, and where I'd generally feel unwell which certainly had an effect. If only I'd known I wonder how different things might have been.
Reading forums such as these and it's obvious there are a lot of people worse off than me. So you have my sympathy.
:ghug: