Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Sam, You wrote, " Is it true that if your levels are not elevated, you can still be having an acute attack of pancreatitis. ... Why do the doctors run this test if it does not matter how high or low your levels are? If it is not a determining factor in diagnosis pancreatitis, why do they even run the test? " Kimber addressed the issue of pancreatic burn out and the inability to produce pancreatic enzymes. When this topic came up a few months ago, someone else brought up another important point. It is the other end of the spectrum from complete burn out. It may be that the pancreatitis only affects a small area of the pancreatic tissue; it is significant enough to cause pancreatitis, but not enough to cause elevation of pancreatic enzymes. I wish I could find the reference where that was obtained, as it was explained much better. The reason why the (ER) doctors use pancreatic enzyme levels (lipase and amylase) as the diagnostic measure is purely the absence of any other objective tool. Current medical school textbooks still have the ‘old’ school of thought that the “gold†standard of diagnosing pancreatitis is an elevated enzyme level. This may in fact be a measurement tool for acute pancreatitis. Chronic pancreatitis is a different disease process, one that is commonly not followed in acute care. Therefore, this is not often seen by residents. Aside from the enzyme levels, the remaining option for the ER doctor is the subjective complaints of pain by the patient. Just as the enzyme levels are " gold standards " , there are also, " classical " signs of pancreatic pain, such as mid sternal pressure pain and sharp radiating pain to the left. As we know, pain can differ with as many people there are here. I quickly learned that if my pain did not reflect this " classical " complaint as indicated in the medical textbooks, then sharing where the pain really was often brought about looks by the doctors that they did not believe it was really pancreatitis. I once heard someone say, " If she is going to fake pancreatitis, she should at least get the pain right. " Whenever I complain of back pain, they want to work me up for a kidney infection. There are, of course, diagnostic tools such as the CT scan, MRCP, ERCP, and Endoscopic US that will often indicate pancreatic damage without corresponding elevation in enzyme levels. These, however, are not available to the ER doctors and few patients carry results with them. The PAI does recommend that these are included in the patient H&P that are always kept up to date by the patient. In lieu of copies of results from these tests, the PAI recommends that the patient carry a letter from their pancreatologist stating that they have chronic pancreatitis, and that their enzyme levels will most likely not result in elevation, even during the period of a “flare-Up†or “attackâ€. Karyn E. , RN Executive Director, PAI _www.pancassociation.org_ (http://www.pancassociation.org/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Thank you for the insight. It is good to know that we have the same problems as everyone else. I think it is really a shame that Doctors especially ER doctors are not more educated on this disease! Next time we have to go to the ER, I will bring with me all of his pain medication, which he could of course take and overdose, but of course he choose not to do that. Thanks again. Sam jethrotullvermont wrote: --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Karyn: Wow, Thanks for the information. I am definately going to get a letter from Brock's doctor, stating that he has pancreatitis and that he has had a Frey Procedure. Maybe then they will get it through their heads that he really does have pancreatitis and his levels will not register! Do you take any enzymes? If so, do you feel that they help. Right now Brock is not taking any enzymes and I really want him to, but he refuses to do so. He has not seen his Gastroenterologist for quit sometime. I think that he thought since he was doing so well for about two months that he was " cured. " I now understand that this will more than likely never go away. Thanks for the information. Sam KarynWms@... wrote: __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Kimber: Yes Brock does see a Pain Management Doctor. He was doing really well for about two months, he gained weight and was taking minimal amounts of the Roxicodone that his pain management doctor prescribed. Then his Lipase rose to about 800 and the doctor's were very hesitant to admit him. They said " Most people can tolerate this level at home without the need for intravenious drugs. " They admitted him anyway. He was there for about 4 days, came home on Saturday, went back to the ER on Sunday and Monday and was admitted last night. I think that they released him to early, and that he probably should have stayed longer. The reason I said I was worried that he was drug seeking was because he is now claiming that the Roxicodone is no longer working for him. He started saying this the day he got home from the hospital (Saturday). I just could not understand why after all this time it worked great for him and the second he gets admitted into the hospital and receives intravenious drugs the pancreatitis flares up. I have also noticed that if he does not get enough sleep or has several nights of restlessness, he goes to the ER. Sometimes, I think that he does this just to help him sleep after so many nights of not sleeping. I think that he has been on ambien and valum for so long that it no longer is working for him. They started him on a new anxiety medication called Soma, so maybe this will work for awhile for him. You said that your pancrease has reached total burn out. Does this mean that you are Diabetic? We have never been told that his pancrease has reached burn out. His blood sugars are always normal, which I thought was an indicator that your pancrease was functioning. Also do you take any enzymes? Brock does not take any at this time. I don't think that he has taken enzymes for at least 2 years. I really want him to take them so that it will aid in digestion, but he won't do it. He has not seen his Gastroenterologist for quit a while. I think that we need to get an appointment with him ASAP, and talk about the enzymes and also test how well his pancrease is functioning. Thanks for the information and advice. Sam Kimber wrote: __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2005 Report Share Posted May 26, 2005 Hi Sam, Your question as specifically applying to Brock is hard to answer with any certainty. It is accepted by most knowledgeable pancreas specialists that chronic pancreatitis, no matter the cause, can have debilitating flares of pain and nausea without elevations in pancreas enzymes. So I would think that in Brock's case, yes it is possible to have sudden and extremely painful " attacks " needing medical care However, if the enzymes do not elevate, then by strict medical textbook definition, he is not having an attack of acute pancreatitis. In cases of known chronic pancreatitis the designation is usually an acute flare of chronic pancreatitis. If the enzymes were to elevate, even in known cases of chronic pancreatitis, then it would be diagnosed as " acute pancreatitis " regardless of his history of chronic pancreatitis. So I guess, the answer is No, elevated enzymes as the indicator of his need for medical care is not reliable. People with chronic pancreatitis can be very ill and in a lot of distress with pain and nausea and have normal levels of pancreas enzymes. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 Sam wrote: " Next time we have to go to the ER, I will bring with me all of his pain medication, which he could of course take and overdose, but of course he choose not to do that. " EXACTLY. I have gone to the ER with pain flare ups and if I was prescribed pain medicine that was ineffective at the prescribed dose I believed I needed to be in a safe place with proper medical supervision and treatment. And yet when you tell some doctors, I have a prescription for say 10 mgs. of oxycodone every 4 hours if needed but that 10 mgs. did not resolve, they seem to feel like you should just self medicate. Well if I self medicate I am taking a big risk right? I mean that is how one ends up abusing pain meds. And when one needs the stronger stuff they also need to be in place where they can be coded if something happens. It is very unlikely but you never know that larger dose might be too much and slow your breathing down dangerously. That is why we turn to physicians to assist us with our pain issues. Otherwise just let me write my own scripts and take care of myself. Heh...Some docs, eh? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 " Basically, by definition, you cannot have " acute " pancreatitis without elevated pancreas enzymes (amylase and lipase). However...this does not mean you cannot have an acute flare of chronic pancreatitis with normal levels. " Hi Laurie, I'm a little late on this thread (I get behind on posts quite often), but I wanted to thank you for your very informative post. I had been about to ask this same question. I had a mild flare-up a couple of weeks ago (my first since being diagnosed last Sept)...at least I'm guessing that's what it was. I had upper abdominal pain, but it didn't radiate in either direction and I had no nausea or vomiting. It did get worse after a couple of days, even when I started taking the Creon again w/ my meals. I stopped eating and went to a liquid diet for about a week and gradually started to feel better. When I had my blood checked (after I had started to feel better), they said my enzyme levels were normal. They also suggested I have an ultrasound, but since the enzymes were normal and I've been feeling better, I haven't gone. I was pretty confused though, and your explanation makes so much sense to me. I know it's not that my pancreas has stopped functioning, but maybe the inflammation was localized and didn't cause the damage that elevated my enzymes the first time. I know I didn't let the pain get as bad this time..it was really more discomfort than pain. This has all been so confusing, especially since I don't present with " classic " symptoms (as I was told by the nurse practitioner at my gastro-enterologist's office). Thank you for helping me understand what's going on a bit better. Falsone annapolis, md __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2005 Report Share Posted June 7, 2005 Sam, I'm sorry it took so long for me to answer this, but I was out of town for memorial day weekend and didn't get back till the Tuesday after that. Then I forgot my thyroid meds and so I was asleep for about two or three days and then once I started back on it, my pancreas decided to join in on the fun and I've been in bad shape until today. Anyways.... Thanks for explaining why you though Brock may be drug seeking, though it could just be that his pancreas is more damaged after each flare and so his normal dosage is not working anymore. I've had this happen about half the time I've had a major flare up (hospitalization). As for his sleeping, there is a new non-opiod sleep medication on the mareket called Lunesta that he may want to try. It's also the first sleep aid approved for long term use, so it might help him better than what he taking now. He should at least ask his doctor about it (if you can get him to see the doctor). Regarding Burnout: yes, I am diabetic, though I've been diabetic since before I was diagnosed with pancreatitis. (they think I had attacks when I was three and four, so I had a lot of damage early on, only they didn't test for pancreatitis). I have pancreatitits because of a birth defect, so the damage has been going on since I was born, basically. Usually people become diabetic when they hit burn out, but I'm not sure that it is a guarantee that it happens at the same time. The doctor could probably better explain the differences of endocrine and exocrine functions of the pancreas. Yes, I take enzymes. I take Viokase 8 and ranitidine with it. The combination of a non-enteric coated enzyme and an acid reducer not only helps with diagestion, but can also help cut down on pain in some patients. Viokase 8 is a non-enteric coated enzyme. Creon is an enteric coated enzymes and doesn't need an acid reducer, but only helps with digestion. Yes, it definitely seems that Brock should see his gastroenterologist sometime soon to talk about enzymes and pancreas function. Again, sorry I didn't get back to you earlier. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
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