- Location
- Surrey,UK
Hello Forum
I'd like to introduce myself. I'm a long term Crohnie living in Surrey, UK. I've had the dreaded disease for more than 35 years. My first surgery was back in 1979 for suspected appendicitis that turned out to be a Crohns related hole in the bowel.
I then spent many years in pretty good health with only a few flare ups. Then in 1998 I was suffering the "classic" right sided lower abdominal pain and a CT scan and subsequent colonoscopy confirmed a stricture in the terminal ileum. I was given the the choice of surgery or trying a relatively new drug - Azathioprine. I opted for the latter as I didn't like the idea of an operation. We were on the point of moving house and that would have ruined our plans.
The Azathioprine worked for a few years but then my platelet count started dropping and I was taken off of the drug. I then tried Budesonide, Ciprofloxacin and Azathioprine (again). I had just started working for myself and needed to get sufficient money in the bank to be able to take a couple of months off. Nothing seemed to work and I was starting to go down hill.
In May 2009 I had a CT scan and it took ages to get the analysis done as the image produced was so complex. My innards looked like an octopus with fistulas and adhesions. I now knew that surgery was inevitable. My local hospital told me that the aftercare needed was beyond their facilities so I was referred to one of the top London hospitals. The difference in treatment compared to my surgery in 1979 - nil by mouth for 3 weeks - was staggering.
A friend of mine suggested that I should record the whole process so that others could benefit from my experiences and might make the thought of surgery less daunting. I decided to write a blog and I have subsequently edited the daily entries into a series of pages that describe what various stages I went through and some of the emotions. I've included some photographs as I always keep a camera with me, even in hospital. In fact I actually had an SLR with me in hospital back in 1979! The blog/diary pages can be found at w w w.highlandsrock.blogspot.co.uk. (There's also a couple of pages on guitars - one of my passions)
You'll find the details form 2010 onwards in the blog but briefly - Oct 2010 - Ileostomy with stoma, carried out under Enhanced Recovery Programme at St.Thomas' Hospital (stunning views). Seven months living with a stoma including a trip to hospital in an ambulance and a few complications. June 2011 - Reversal operation - no more stoma! 3 months post-op on Metronidazole and then no medication. December 2011 - colonoscopy showing no recurrence of Crohns. April 2012 - CT scan showing evidence of inflammation in large and small bowels. May/June 2012 - emergency admission to local hospital this time with sirens and blue flashing lights. Suspected aesophigeal varices and primary sclerosing cholangitis. June 2012 - colonoscopy showing no signs of Crohns!
So I'm now in a state of confusion wondering if the Crohns has started up again; if i have got PSC and how they are related (or not)....and not forgetting the thrombocytopenia! I've got an MRI scan on my liver on Thursday week and I've just provided a sample for a calprotectin test. So until the results of both these tests are known it looks like I'm in "waiting for treatment" limbo.
I think that's enough for now
Regards
Nigel
I'd like to introduce myself. I'm a long term Crohnie living in Surrey, UK. I've had the dreaded disease for more than 35 years. My first surgery was back in 1979 for suspected appendicitis that turned out to be a Crohns related hole in the bowel.
I then spent many years in pretty good health with only a few flare ups. Then in 1998 I was suffering the "classic" right sided lower abdominal pain and a CT scan and subsequent colonoscopy confirmed a stricture in the terminal ileum. I was given the the choice of surgery or trying a relatively new drug - Azathioprine. I opted for the latter as I didn't like the idea of an operation. We were on the point of moving house and that would have ruined our plans.
The Azathioprine worked for a few years but then my platelet count started dropping and I was taken off of the drug. I then tried Budesonide, Ciprofloxacin and Azathioprine (again). I had just started working for myself and needed to get sufficient money in the bank to be able to take a couple of months off. Nothing seemed to work and I was starting to go down hill.
In May 2009 I had a CT scan and it took ages to get the analysis done as the image produced was so complex. My innards looked like an octopus with fistulas and adhesions. I now knew that surgery was inevitable. My local hospital told me that the aftercare needed was beyond their facilities so I was referred to one of the top London hospitals. The difference in treatment compared to my surgery in 1979 - nil by mouth for 3 weeks - was staggering.
A friend of mine suggested that I should record the whole process so that others could benefit from my experiences and might make the thought of surgery less daunting. I decided to write a blog and I have subsequently edited the daily entries into a series of pages that describe what various stages I went through and some of the emotions. I've included some photographs as I always keep a camera with me, even in hospital. In fact I actually had an SLR with me in hospital back in 1979! The blog/diary pages can be found at w w w.highlandsrock.blogspot.co.uk. (There's also a couple of pages on guitars - one of my passions)
You'll find the details form 2010 onwards in the blog but briefly - Oct 2010 - Ileostomy with stoma, carried out under Enhanced Recovery Programme at St.Thomas' Hospital (stunning views). Seven months living with a stoma including a trip to hospital in an ambulance and a few complications. June 2011 - Reversal operation - no more stoma! 3 months post-op on Metronidazole and then no medication. December 2011 - colonoscopy showing no recurrence of Crohns. April 2012 - CT scan showing evidence of inflammation in large and small bowels. May/June 2012 - emergency admission to local hospital this time with sirens and blue flashing lights. Suspected aesophigeal varices and primary sclerosing cholangitis. June 2012 - colonoscopy showing no signs of Crohns!
So I'm now in a state of confusion wondering if the Crohns has started up again; if i have got PSC and how they are related (or not)....and not forgetting the thrombocytopenia! I've got an MRI scan on my liver on Thursday week and I've just provided a sample for a calprotectin test. So until the results of both these tests are known it looks like I'm in "waiting for treatment" limbo.
I think that's enough for now
Regards
Nigel
