Just Need To Talk

I was diagnosed with chronic pancreatitus back in December 2011, spent 6 weeks in hospital from end of January to mid March with severe symptoms. Had CT scans, MRI scan, endoscopes etc to make sure nothing more sinister was going on. Mine isn't caused by alcoholism or bad diet. I'm in that 10-15% who get it completely randomly. I had a blocked bile duct. So a stent was put in to drain the pancreas & ducts. That caused a duodenal perforation - the worst pain I've ever felt. But the stent eventually began to work. I began to put on weight, having lost 12kgs in the time I'd been ill. But the stent was only a short-term solution. It was removed on Friday & I'm now back in pain almost constantly.
I suppose I just needed people to talk to who knew what this is like to deal with. Do you feel like your life is on hold? Worry about long term consequences? Frustrated that there are no cures?
Is there a pancreatic charity that funds research or anything?
MarjiMel9 MarjiMel9
36-40
2 Responses May 7, 2012

I know how you feel. This disease is a giant pain. Had mine for 5 years. At first all I got was a run around. No one really wanting to help with it. I do feel like life is on hold. I don't only have pancreatitis but also a couple of other serious health issues as well, but the pancreas is def the most irradic problematic one of them. You can't eat right, you can't this you can't that. It's just a nightmare. Those stents, well yes they are jsut temporary. Honestly I wouldn't get one for myself as most people either end up having problems with them or they don't help at all. Temporary relief isn't worth all that, not for me anyway. You know There are ways to get better from this. One of the best ways is the total pancreatectomy with auto islet cell transplant surgery. There are a few places that do these in the states. The university of Minnesota being the best. They done my friends and she has been way better since. Never getting sick like she did before it. There are people such as angel flights that can take you there for free. This is what I plan on doing. I am waiting cause to be quite honest I can handle pain very well and I don't have as much of it as some do, so on that part I am lucky. Exercising is one good way to get better and of course eating. I lost 30lbs from doing so. I am not skinny I have actually gained muscle and and I'm good shape. Which has helped me tremendously. A lot of people think That you can't exercise when your sick, but take it from me with many things wrong that yes you can. I run almost ten miles. I also lift weights and do other things such as kung fu. You have to stay consistent with it. I get so tired of people saying oh I can't do that, but yes you can. People are just lazy about it. I ain't lazy and I am telling you it works. I also take no pain medicine at all. I hate the withdrawals of them. So that is a few things to consider. hope that helps.

Welcome to the club. I have had CP for the past ten years after a dose of acne medicine elevated my triglycerides to lethal levels. <br />
This website is the first I have found where I found more people with CP. I don't know of any charity or any research. <br />
I do now know about the University of Minnesota and their amazing docs. I just spent the last 11 days there and got testing I didn't even know about. My drs here (IN NY) haven't even tested my pancreas in years. They were happy to keep with the status quo. <br />
Check out the GI drs at the U of MN, they may be able to give you some other options. I am currently debating the procedure to take my pancreas put totally & transplant the Islet cells. <br />
Make sure you are your own advocate! Don't give up! There are options! <br />
I hope this helped a little.