- Location
- Surrey,UK
I thought I'd just put a few words about this condition as in my case it is Crohn's related as you will see. Here's the background :
In 1979 I had emergency surgery for suspected appendicitis which turned out to be a perforated bowel. I had already been diagnosed with Crohn's the previous year and the perforation was clearly caused by the Crohn's. My abdominal cavity needed washing out before I was sewn back up and I still have an appendix!
Fast forward to 1999 when I was told that I had a narrowing stricture around my terminal ileum. I'm sure that sounds familiar to others. I was given the choice of Azathioprine as a last chance before surgery. Everything was going fine until early 2008 when a routine blood test showed that my platelet count had fallen dramatically. The Aza was immediately stopped but the platelets never really recovered.
Fast forward again to the end of May 2012 when I was rushed to my local A&E Dept because I had vomited a large quantity of blood. The initial diagnosis was primary sclerosing cholangitis (PSC) which has subsequently been downgraded? to PVT. The bleeding was from varices (new, varicose like veins) which had formed in my oesophagus as a result of a blood clot restricting the blood flow through my portal vein (PVT - portal vein thrombosis).
The immediate treatment was to go on to beta blockers to reduce my blood pressure and have a couple of transfusions to stabilise my condition. I was then passed back to my usual hospital for long term treatment and this has consisted of variceal banding where a specially equipped endoscope is passed down the oesphagus, a section of vein is pulled into a "peak" and a rubber band placed around it which causes it to wither away. I've just had my second session and have one more planned for 3 weeks time. The second session was certainly more painful than the first when I came round from the sedation. After the banding you are only allowed liquids for the first 24 hours and then a "sloppy" diet for the next 3 days. I'm back normal food again today.
Because this condition is liver related I've been referred to a liver specialist. When I saw him a couple of weeks ago his first question was "When did you first have surgery?" I explained what happened in 1979. He suspects that the problem with the portal vein goes back this far and the effects have slowly worsened over time. His exact words were "I suspect he had portal pyaemia and a blocked portal vein at his original presentation in 1979" and that "this and the resultant splenomagley has been the main cause of his low platlet count and certainly the cause of his oesophageal varices".
As I'm not a medical man I did that thing that we all do, looked up some of the medical terms. The first one I Googled was "portal pyaemia" and Crohns. The first document I found stated that it "usually predicts a fatal outcome". I also looked up PVT and Crohn's and found the following statistics - 70% of patients have a second bleed and of those a third are fatal. I make that approx. a 1 in 4 chance! It's rather a sobering thought that this problem has lain dormant for 33 years. I've got a lot of questions for the liver specialist when I see him again at the beginning of November.
In 1979 I had emergency surgery for suspected appendicitis which turned out to be a perforated bowel. I had already been diagnosed with Crohn's the previous year and the perforation was clearly caused by the Crohn's. My abdominal cavity needed washing out before I was sewn back up and I still have an appendix!
Fast forward to 1999 when I was told that I had a narrowing stricture around my terminal ileum. I'm sure that sounds familiar to others. I was given the choice of Azathioprine as a last chance before surgery. Everything was going fine until early 2008 when a routine blood test showed that my platelet count had fallen dramatically. The Aza was immediately stopped but the platelets never really recovered.
Fast forward again to the end of May 2012 when I was rushed to my local A&E Dept because I had vomited a large quantity of blood. The initial diagnosis was primary sclerosing cholangitis (PSC) which has subsequently been downgraded? to PVT. The bleeding was from varices (new, varicose like veins) which had formed in my oesophagus as a result of a blood clot restricting the blood flow through my portal vein (PVT - portal vein thrombosis).
The immediate treatment was to go on to beta blockers to reduce my blood pressure and have a couple of transfusions to stabilise my condition. I was then passed back to my usual hospital for long term treatment and this has consisted of variceal banding where a specially equipped endoscope is passed down the oesphagus, a section of vein is pulled into a "peak" and a rubber band placed around it which causes it to wither away. I've just had my second session and have one more planned for 3 weeks time. The second session was certainly more painful than the first when I came round from the sedation. After the banding you are only allowed liquids for the first 24 hours and then a "sloppy" diet for the next 3 days. I'm back normal food again today.
Because this condition is liver related I've been referred to a liver specialist. When I saw him a couple of weeks ago his first question was "When did you first have surgery?" I explained what happened in 1979. He suspects that the problem with the portal vein goes back this far and the effects have slowly worsened over time. His exact words were "I suspect he had portal pyaemia and a blocked portal vein at his original presentation in 1979" and that "this and the resultant splenomagley has been the main cause of his low platlet count and certainly the cause of his oesophageal varices".
As I'm not a medical man I did that thing that we all do, looked up some of the medical terms. The first one I Googled was "portal pyaemia" and Crohns. The first document I found stated that it "usually predicts a fatal outcome". I also looked up PVT and Crohn's and found the following statistics - 70% of patients have a second bleed and of those a third are fatal. I make that approx. a 1 in 4 chance! It's rather a sobering thought that this problem has lain dormant for 33 years. I've got a lot of questions for the liver specialist when I see him again at the beginning of November.
