Hi all
I'm Shaun from Somerset. I've been lurking here for a while and thought it about time I made the effort to join properly and say hello !
Diagnosed with CD in 1989, so an old hat at it all by now :rof: I've been very lucky for a lot of years following the initial diagnosis at the age of 21. I spent a couple of long bouts in hospital getting diagnosed initially, going through a big shock to the system at what I was being told I had, having never heard of it before. Things do seem to be a lot more common nowadays than the late 80's and many more people seem to be aware of the disease, which can only be a good thing !
I'm a tall chap at 6'4" so on the 2nd admission to hospital when my weight dropped to an all time low of 7 stone 6 pounds, I guess I knew I was in for a long trip ahead. Treatment back then consisted of a huge dose of pred, 120mg a day initially, along with Azathioprine to back it up. Finally after a few weeks in hospital, things started to improve and I was released Xmas 1989. The build up to full weight was slow, but eventually got back to the usual 14 stone over several months.
For 20 years, I would say I've been very lucky. There has been the odd flare up, but nothing serious until now. Those years were maintained mainly with Aza though several long bouts of Pred too when the flare up's happened. These were only small though, and the steriods seemed to work very well for me. Also on Asacol for all that time, and a couple of years back had a course of Infliximab to keep things at bay. Apart from the odd Pyoderma on the legs, things have been well controlled until recently. I must admit to not having the best of diets, and being lucky I got away with it I guess. Many curries and much beer, I seemed to be able to eat anything and everything without any problem. As I say, I think I was very lucky !!
Last November things started to go wrong again. I initially brushed it off as stress and fatigue, I was working away a lot at the time and had a very stressful job, which now looking back I'm sure didn't help ! I was also taken off of Azathioprine last summer, after 20 years, so the disease was being controlled by Asacol completely at that time. So, I got through Xmas and into 2011 and felt things decline gradually. It was a slow job, and I guess I still had my head buried in the sand at that point, typical of me.......
I had my usual yearly colonoscopy in February so thought I could make it through to then. The results of that weren't good, showing a lot of new inflammation in the large bowel and various other bits that had appeared in the 12 months since the last test. A follow up scan also showed a fistula near the join from large to small bowel, so surgery was deemed the only way to sort it. This was agreed around April time, though initially it was onto a waiting list as it was deemed that i could wait.
Things of course at that point started to get worse, lots of stomach pain, gradually over days and weeks got worse, to the point of not managing to eat anything at all from mid May onwards, without rolling round on the floor in agony. I was put onto the emergency list, the appointment finally being made for surgery on the 22nd June. I was bricking it, I admit, having never had any surgery before for anything, and managing to keep out of hospital for 20 years. But I was also in so much pain that in the end I was practically screaming out to be taken in to get it sorted !
So............... here I am, 2 weeks and a day since the resections, back home, pain free, a little over 11 stone, back on pred, wounds healing well, appetite like a horse (thanks Pred) and generally feeling fab, though a little tired and zonked occasionally. No follow up appointment yet, though expect this soon, but as far as I can tell, the op was a resounding success and after 8 months, it's fantastic to not be running to the loo 30 times a day, to be able to eat without manic pain and to generally feel like life is worth living again
The hospital stay was 10 days, the post op was well covered with fantastic pain killers, though had some complications last week where the bowel had gone to sleep and wouldn't wake up (apparently a common occurance after surgery). I had a ng tube for 5 days, and eventually the whole thing sprang back into life !
So that's my story, prompted at last to join properly and say hello after recent months events and I promise to try and play a more active part on here going forward. It's such an amazing place and the stories are both very sad and very inspirational........
I'm Shaun from Somerset. I've been lurking here for a while and thought it about time I made the effort to join properly and say hello !
Diagnosed with CD in 1989, so an old hat at it all by now :rof: I've been very lucky for a lot of years following the initial diagnosis at the age of 21. I spent a couple of long bouts in hospital getting diagnosed initially, going through a big shock to the system at what I was being told I had, having never heard of it before. Things do seem to be a lot more common nowadays than the late 80's and many more people seem to be aware of the disease, which can only be a good thing !
I'm a tall chap at 6'4" so on the 2nd admission to hospital when my weight dropped to an all time low of 7 stone 6 pounds, I guess I knew I was in for a long trip ahead. Treatment back then consisted of a huge dose of pred, 120mg a day initially, along with Azathioprine to back it up. Finally after a few weeks in hospital, things started to improve and I was released Xmas 1989. The build up to full weight was slow, but eventually got back to the usual 14 stone over several months.
For 20 years, I would say I've been very lucky. There has been the odd flare up, but nothing serious until now. Those years were maintained mainly with Aza though several long bouts of Pred too when the flare up's happened. These were only small though, and the steriods seemed to work very well for me. Also on Asacol for all that time, and a couple of years back had a course of Infliximab to keep things at bay. Apart from the odd Pyoderma on the legs, things have been well controlled until recently. I must admit to not having the best of diets, and being lucky I got away with it I guess. Many curries and much beer, I seemed to be able to eat anything and everything without any problem. As I say, I think I was very lucky !!
Last November things started to go wrong again. I initially brushed it off as stress and fatigue, I was working away a lot at the time and had a very stressful job, which now looking back I'm sure didn't help ! I was also taken off of Azathioprine last summer, after 20 years, so the disease was being controlled by Asacol completely at that time. So, I got through Xmas and into 2011 and felt things decline gradually. It was a slow job, and I guess I still had my head buried in the sand at that point, typical of me.......
I had my usual yearly colonoscopy in February so thought I could make it through to then. The results of that weren't good, showing a lot of new inflammation in the large bowel and various other bits that had appeared in the 12 months since the last test. A follow up scan also showed a fistula near the join from large to small bowel, so surgery was deemed the only way to sort it. This was agreed around April time, though initially it was onto a waiting list as it was deemed that i could wait.
Things of course at that point started to get worse, lots of stomach pain, gradually over days and weeks got worse, to the point of not managing to eat anything at all from mid May onwards, without rolling round on the floor in agony. I was put onto the emergency list, the appointment finally being made for surgery on the 22nd June. I was bricking it, I admit, having never had any surgery before for anything, and managing to keep out of hospital for 20 years. But I was also in so much pain that in the end I was practically screaming out to be taken in to get it sorted !
So............... here I am, 2 weeks and a day since the resections, back home, pain free, a little over 11 stone, back on pred, wounds healing well, appetite like a horse (thanks Pred) and generally feeling fab, though a little tired and zonked occasionally. No follow up appointment yet, though expect this soon, but as far as I can tell, the op was a resounding success and after 8 months, it's fantastic to not be running to the loo 30 times a day, to be able to eat without manic pain and to generally feel like life is worth living again
The hospital stay was 10 days, the post op was well covered with fantastic pain killers, though had some complications last week where the bowel had gone to sleep and wouldn't wake up (apparently a common occurance after surgery). I had a ng tube for 5 days, and eventually the whole thing sprang back into life !
So that's my story, prompted at last to join properly and say hello after recent months events and I promise to try and play a more active part on here going forward. It's such an amazing place and the stories are both very sad and very inspirational........
