Pancreatitis Support Group

I am not new to DS, but I am to this group. It is the closest I can find in relation to what is going on with my health right now.

I began having pain in my upper right quadrant that radiated to my back and up to shoulder in June 07. It isn't that I have never had this pain before, its just that it became constant and much worse and I also was very nauseated. I had episodes of similar pain, in fact, a year prior, 6/06, I was referred for thoracic pain, and was referred to a musculoskeletal specialist (d.o.) who when first examined me said I had digestive issues. He also diagnosed me with fibromyalgia. I still think he knew this wasn't from my fibro. I think now this has been going on since I had my gallbladder attack. After the surgery to remove my gallbladder, I still had episodes intermittently and the GI diagnosed this as IBS.

Anyway, this was so similar to my Choleycystitis that the docs weren't sure what was going on. They ran every test on me, cat scans with and without contrast, xrays, HIDA Scan, labs, ultrasounds, kidneys were scoped. Gastroscopy, everything came back negative. That is when my GI suggest I get testing for SOD (sphincter of Oddi dysfunction).

I finally had an ERCP w/manometry and sphincterotomy and stenting in January 08. She measured my pressures at 150 and 200 in the sphincter of oddi and pancreatic ducts. The stent fell out before 2 weeks and when I contacted her, she said there was nothing else that she could do and I would have to live with this pain.

I didn't agree, so I found another doctor who is well known in this field (had to travel to Minnesota). I had another ERCP w/manometry and sphincterotomy/stenting 4/17 as my pressures were still high in the pancreatic duct. I have been home now a week, and now I am having horrible pain in my left side/radiating upward into shoulder along with right sided pain. I may go to the ER if this continues to get worse or just continues tomorrow.

I am just feeling so hopeless right now. I have suffered many other debilitatingly painful disorders (one being endometriosis), and this is far more painful than anything I have experienced. I hate taking narcotics, and thus far, I have only used Ultram and Vicodin. The ultram sometimes makes my heart race, so I am relying more on the vicodin and this makes me extremely uncomfortable.

I am just wondering if anyone out there has experienced this disease and how have you dealt with it, what pain meds have you used or procedures have you had done.

Thanks,
San
Posted on 04/26/08, 08:04 pm