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Digestive Health | Last Active: Oct 16 2:05pm | Replies (137)
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I (at last) have been diagnosed with chronic pancreatitis but I have heard so many different views about the amount of pain I’m in. Nurses ,as well as my own,as an ex nurse, view is that it can be a very painful condition but the gp I consulted yesterday stated that he didn’t know why I was in so much pain. I’m now on Zomorph but it’s early days yet but I’ve absolutely no appetite and that just isn’t me. This,in itself, isn’t a problem at the moment because I started off so heavy, but as a mental health patient also, I’m terrified that they’ll think I’ m deliberately not eating to harm myself. What do you do to be believed?
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@carolel, Hi Carole,
I have been undergoing some procedures, tests, bloodwork for my chronic, debilitating nausea and there has been no answer, but... I have had pain for 12+ years from chronic pancreatitis and it may be on a 7-9 level with no let up for days or weeks and it may be 2-4 for the same period. The only explanation my doctor at MUSC suggests for this is that 1. chronic pancreatitis is a progressive disease that continues to damage the pancreas regardless of a diagnosis because there is no cure. 2. The drainage duct for the pancreas can become "clogged" and he performs an ERCP and places a stent in this spot, drainage improves, and my pain is better sometimes. 3. During an ERCP my doc has also discovered stones and removed them and my pain is improved for a while, but like other stones in other organs, they can return. 4. For some subset of the population who develop chronic pancreatitis, the pain eventually goes away. There are no studies I have found that place a percentage on this subset and the amount of time between the onset of pain and this mysterious disappearance of pain is wide-ranging. I am either not one of those people or haven't paid enough penance yet - just a joke.
As a former nurse, you may know this to be true, but nurses in my large circle of health care providers at some point during the past 12+ years have told me that from personally experiencing child birth, kidney stones, and acute pancreatitis, that they would choose either of the other two over pancreatitis. Now for a GP who does not understand why you are in so much pain, suggest he shoot himself in the abdomen, not get treatment and see how badly that hurts. (please don't shoot him yourself) There is no research which says that once you stop having acute attacks and are dx'ed as chronic that your pain level subsides - anyone suggesting otherwise is ill-informed and should not be a physician because they don't know what sympathy or empathy is!!!! The only minimal relief I get is from opioid pain medicine and it does not get rid of it; just takes the edge off. Intravenous morphine is much more effective because it does not have as a side effect, at least for me, of abdominal pain. The other medicine I have been prescribed after surgery for appetite enhancement (Marinol - a synthetic cannabis) actually was also the best pain treatment I have used. My cruel state legislature does not see fit to allow this to be used for anything other than end-stage cancer pain. God forbid the medical community be allowed to properly treat someone's pain who is not dying - we may get paranoid or become physically addicted and that would be so much worse that opioid addiction, habituation and the brain changes they can cause over years.
If you think I am a tiny bit bitter, you would be spot on! It is not an option for me, but I certainly would move to Colorado if I were younger or if I could move my entire family.
Sorry, Gary