Welcome, Lisa. We are glad to have you on our "team" and I know your contributions will be very helpful. Good luck!
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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.
To the various posts and questions; The total bill for what my Psych had done for me was about $300 if my insurance had not picked it up and she advised me not to pay them anything as she had never had a patient have to pay. I don't know that what I had was a full blown DNA test/gene map, but it was appropriate for our needs. As for Remeron, I don't think it led to weight gain. My weight fluctuates greatly as a result of inflammation, bloat, a balky digestive system, etc…Ten pound swings over 2-3 days in either direction are pretty common and when I average scale readings over a couple of weeks, I am down about 30# over the past year, but I have been taking the remeron for much longer. Most of my loss is attributable to severe nausea over the past 5 months.
Peace to all,
Hello @barnowl53, @karen00! I am a volunteer mentor on Connect and wanted to mention something I have recently done with my psychiatrist. I had a DNA/gene analysis from a few cheek swab cells. I don't fully understand the results, but they helped my psych get me on the medicine that I should respond to better than other antipsychotics. I have chronic pancreatitis and besides pancreatic insufficiency, I primarily suffer debilitating pain and only opiates even take the edge off. I have been on synthetic morphine – extended-release and breakthrough – for over a dozen years now. I had generalized anxiety disorder and after a few years of the pain and opioids was dx'ed with severe depressive disorder. I have been through extremely dark periods and more moderate periods. I have never gotten any great degree of relief from the many antipsychotics I have tried, but armed with the information from the gene analysis, I am now on Nuvigil and Prestiq, along with Remeron for sleep. We also learned that I have a MHTFR mutation which causes one to not produce an enzyme needed for serotonin production/absorption. For that, I take an over the counter supplement called L-Methylfolate. The body should convert folic acid or folate into this substance and that enhances my body's use of serotonin. One other thing revealed was that I am a very fast metabolizer of medicines which means I need higher doses to be therapeutic. The past 4-5 months have been very difficult physically and would have typically put me in a downward spiral to deep depression, but so far, it has not. I am getting a bit frustrated with the situation, but not terribly depressed.
I wish you relief from this horrible disease,
Hi @steve9256! I am the gman007 (Gary) that Justin tagged earlier in this thread and I missed it then. One answer to your question is that somewhere near the time your body is accustomed to waking up, the pancreas produces extra insulin for the increased energy you will need to get your day going. It is called several things, but is very normal, and desired if you have a busy morning ahead of you or an early morning workout.
As an FYI to anyone with diabetes, I am adding something my endocrinologist suggested and my results. I have been using the Dexcom G5 continuous glucose monitor for about 6 months and the accuracy always left much to be desired. The original instructions indicated that it should be worn near the waist on the front of the abdomen or on the side near the waist. When I explained my accuracy problems, he suggested I try it on the back of my upper arm and the difference has been wonderful. From the first night, I inserted a new sensor there, my CGM reading has been no more than 5 points different from my meter reading. This is fantastic for overall control. I was setting myself up to stay higher than recommended all night because I did not trust the alerts I may get if my blood sugar wandered in a downward direction. This distrust, I believe, was a major factor in my A1c being 7.4 last week as opposed to something in the mid 6 range over the long term.
I hope this is beneficial to someone,
The Medical University of SC. It is in Charleston, SC. In the past few years another hospital system in the upstate has begun teaching, but it will be some time before they are likely to have docs who have/are performing high volumes of pancreatic procedures and I would not go anywhere if that is not true. Don't wish to be practiced on.
I get that. We have some excellent pancreatic docs at our states medical university and my GI sent me there when I was considering Mayo and Johns Hopkins. I don't know how they rank nationally as a group, but I have great confidence in them. It is about a 3 1/2 hour drive from my home and, with my wife driving, we can leave home at 5:30, get there, have an ERCP performed to place a stent or use a ballon to remove stones, etc… and be home by about 6PM. Tough for my wife as she usually has to be back at school the following morning, but it is doable. I hope you can get somewhere you are confident in for a team approach to a diagnosis and then some relief.