It’s been a couple of weeks since I’ve written. I promised myself that I would post at least once a week and that is still my goal but sometimes life gets in the way. It would be great if I could say I was too busy with friends and baseball games, camping and BBQ’s that I just couldn’t find time to turn on the computer. But instead of living my life I have been spending all my time trying to convince myself that things will get better. A new friend, Self Pity, has wiggled her way into my reality. I’ve been trying to avoid her but she knows where I live.
The pattern has continued. I’ve been sick since 9-1. After the ERCP’s I usually feel better for two to four weeks. The pain is there but manageable. I don’t have to take the pain pills and I start looking forward to the future. Then I have another attack and the future is put on hold. Usually the attacks last for three to five days but this time I have been sick for twelve days so far. I need it to stop.
I saw the doctor last Tuesday. She explained what they found during the last ERCP and we talked about what happens next. She used a few words that I wish she hadn’t.
Failing – as in – “You’re failing all the standard treatments and therapies we use to treat this condition.”
Extreme – as in – “You’re what we call an extreme case because you’re not responding to treatment.”
Surgery – as in – “They bring up a section of your small intestine and attach it directly to your pancreas, bypassing the valves and ducts that are causing all the problems.”
Nationwide – as in – “I think it’s time that we look nationwide for a pancreatic surgeon that has performed hundreds of these procedures.”
WTF – as in – Why has this happened to me?
In summary, I have a rare condition that causes the valves in my pancreatic duct to malfunction, causing scarring and narrowing of the duct which in turn causes the enzymes that are supposed to digest my food to back up into my pancreas and digest my pancreas instead. Most people with this condition are helped by the standard treatments. I fall into an even smaller category since I have experienced only short term relief from the ERCP’s. My current doctors are at a loss and recommend I see somebody who is among a handful of doctors in the country that have experience treating people like me.
Again…WTF. Self-Pity has moved in to my guest room.
