Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Hello Colin and welcome! I'm so sorry you have this unpleasant condition. I live in the UK as well, Merseyside. My specialist is Professor Neoptolemos at the Royal Liverpool Hospital. I'm 58 and have had symptoms of one kind or another.....some pretty horrendous at times.....all my life, well, since I was about 5! I had my final diagnosis only last year after CT scan etc. Pancreatitis is notoriously difficult to diagnose. I was terribly ill in the 1980's but a CT scan didn't show up anything really wrong with the pancreas and finally I was diagnosed with coeliac disease. Prof N. is 99.9999% certain that I have a hereditary form of pancreatitis....my mother suffered from the same disease. Anyway, enough about me. I can understand that you feel scared at the moment but do take heart. As the others have said, this is a very helpful site. Like Chrissy, I don't know how I would have got through my first year as a disgnosed CP sufferer without the group. Do you have a good specialist? Pancreatitis is pretty rare so you need a really experienced gastroenterologist or, preferably, a specialist in diseases of the pancreas. (I am lucky to have an excellent gastro at the Royal as well as Prof who is a pancreatologist and pancreatic surgeon. The UK team which leads the EUROPAC research into hereditary diseases of the pancreas and keeps the database of affected European families, is also based in Liverpool so I suppose, if I have to have this disease, I'm " lucky " to be here!!) Are you able to eat at the moment? Do you have pain relief when you need it? Are you concerned about work? Please do feel free to talk to us as much or as little as you'd like to and to put any questions you may have. As has been mentioned, there are some members who are nurses and that is always helpful. Others know a lot about different aspects of the condition. Basically we share our experiences and that in itself is helpful when one is faced with a scary new condition. With very good wishes, Fliss (UK) Quote Link to comment Share on other sites More sharing options...
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