Pancreatitis Support Group
Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...
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
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
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
My case is complex because I have a huge list of other conditions, so I take ultram and percocet for the pain, but it only dulls the pain, it doesn't take it away. I'm not sure what treatment I will get next, so I can't advise you on anything.
I just wanted to give you my support in what you're going through. You sre right in that this is a horrible condition that is misunderstood by a lot of people, especially because all of the tests come back okay. This year was the first time that my tests showed anything wrong, although I've had pancreatitis all my life.
If you need to talk, send me a message and I will respond to you as quickly as I can.
After the ERCP, the stent and the cut on the sphincter I felt great for about 2 months (another poster said the same exact thing--I find ironic). Then I was right back in horrible pain and nausea. Went back in the hospital and had the stent removed. The pain was gone for a bit, continued with the nausea. I've been on Phenergan daily for about 3 years? I had already been taking Suboxone for another pain disorder so I guess it is helping to ease the pain, I am not sure. Lately the pain, nausea and diarrhea is getting SO bad I can't stand it. I'm just SO tired of doctors and hospitals. Not to mention with being on the Suboxone it has Naloxone in it which is an opiod antagonist so it blocks the action of any opiate. No narcotic will work that the doctors give me unless I wean off of the Suboxone and that takes several days.
I'm in the middle of an attack right now, HAVE to work because if I miss one more day of work I will be terminated. I can barely get through my shift. I just REALLY don't know what I am going to do. I'm supposed to go to a class after my shift but I seriously don't think I am going to make it. I just want to go home and go to bed or go to the ER!
Glad to find some other people out there with the same thing. The other problem with pancreatits is everyone thinks it's from drinking alcohol and IT'S NOT! Not this kind anyway!
I also have CP and SOD my problem is in the tail of the pancreas im told the most difficult to treat surgically , i am currently on Morphine Sulphate 120mg every 12 hrs as my main pain control but find it is difficult to wiegh out the benifits of it .
It relieves the pain to a degree but leaves me feeling drunk, sick, tired and my short term memory is shot. As a top up for my pain in between the Morphine Sulphate i take oxycodone hydrochloride solution 10mg every 4 hrs which works quite well for a short period of time. My trouble is im terrified of surgery but have been told it would cause me other digestive problems if i had it.
This is a very scary disease and i cant begin to relate to you as to the feeling that i am not alone anymore even tho i wish this on no-one it is nice to know that others know how you feel.
I wish you all the luck in the world and if anyone would like a natter or a moan i will be here as often as i can , best wishes.J x