Hello all,
I am sorry that you all suffer from this chronic disease. I feel worse for those of you that are not getting proper care and inadequate pain control. No one should have to live in pain. There are numerous pain medications and combinations of pain meds that can keep the pain from this disease under control. It sometimes takes several tries to get it right, but there is help. Just a few of the things my son has done for his pancreas pain are: hot packs, soaking in a very warm bath tub, lying on his side with knees pulled up, back massage (light touch), relaxation tapes. He finds that when he feels an attack starting if he begins to fast, it does not grow into a full blown attack. He takes juices and water, clear liquids for a few days and then eases back to food. He always remembers his enzymes even if using juice as his meal. He takes antioxidants that have lessened his pain. Narcotics are a way of life for him. He has also tried the Sandostatin injections into his belly, which just caused nausea, vomiting for him, but for others they have helped. He has been on Vicoden, Oxycodone, Oxycontin, Percocet, methadone, Dilaudid, plus the morphine patches. Currently, he is on methadone for a long acting pain control and takes dilaudid for breakthrough pain. He takes a multiple vitamin, Mirilax for constipation, and his antioxidants, plus Prilosex to protect his stomach from the enzymes.
If you are not being treated by someone who specializes is pancreatitis, it is very difficult for them to understand the degree of pain that consumes your body. ER physicians are the hardest to convince of the pain you have. You are labeled a drug seeker very quickly. We will do everything possible to avoid a trip to the ER. If you have chronic pancreatitis and you have enough burn out, then your enzymes don't elevate any longer and that makes it even harder to get an ER physician or one that does not know how the pancreas functions to believe you are suffering from chronic pancreatitis and are in excruciating pain. Some patients have letters that they carry from their physicians stating their diagnosis and the fact that they are narcotic tolerant and they may not have an elevation in pancreatic enzymes. Mayo clinic has a page that indicates why blood counts are sometimes normal for patients that is available for reprint for patients to keep with them to present to ER physicians. I am always sorry to hear from patients who are not adequate treated because there is LIFE with chronic pancreatitis. There are many changes, many hard times, but there are also many good days and even great days. We have been under pretty good control for about six months again and hope for more. You notice I say "we" because this is definitely a disease that involves the entire family, not just the patient. My son is our patient and we work together to make life the best for all of us. Blessings to you all and prayers for a good day and may He lead you to the proper physician. With His help, better days are possible. Linda
