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I have had Pancreatitus 6 times over the past 11 years. It is the most excruciating pain I could imagine. This last time I was in intensive care for 8 days then close care for 15. I was overdosed twice with morphine (I lost auto-functions: respiratory failure,cardiac depresion) in attempts to manage the pain. I was put on machines to recover but upon consciousness I would feel the waves of pain and scream for help and apparently would rip out the tubes & wires and get combative. I was put under with a general & physically restrained to the bed (Tied Down). after 3 days I eventually got a little better to where I could tolerate the pain with constant IV morphine drip & dilaudid injections. (no demerol).

I have since usually felt moderate abdominal pain with radiation out my back. 3 months later, after onset of increased pain and looking jaundiced, my doctors suggested a CT scan to review conditions and found the pancreatic pysdo-cyst that was small & assumed would go away as the Pancreatitus resolved, was discovered (by CT Scan) to have grown to 10.5 cm x 6.5 cm and via pressure against liver collapsed the biliary duct. A procedure for installing an endoscopic drain, cyst to stomach was performed however what was to be a 1 hour in and out same day procedure turned into a 5 day intensive care recovery as upon retraction of tools from my throat, I vomited bile acids then respirated it into my lungs. I have had a terrible time with all this over the past 6 months.
Question: What can I do about long term pain relief if things continue as they are? I have been on a lot of high-dosage narcotic pain relievers over the past 6 months, mostly IV morphine & dilaudid in hospital then various oral upon going home. No question that my tolerance has gone up - percoset is plain ineffective. Lately, I have been using 4 mg dilaudid every 4-6 hours just to take the edge off the pain that still exists despite succesful drainage of cyst. It is all that seems to work. My Doctors are concerned with the dependence issues, as I am, but this very real pain needs relief and overrides any other "maybe' issues. I am going to have another CT in a week if pain does not subside to look for something not healing or other complications. If nothing stands out (bloodwork is good and even show improvement) I am afraid the doctors will begin to stop the pain relievers. I have had to be taken to ER for 24-36 hours several times for pain management & IV antibiotics, nutrition, Etc. I am virtually disabled by this condition and I don't see an end to it anytime soon. I have a good career, a young family, everything I want to participate in but I'm pre-occupied with this illness and it's pain. Again, what can I do for recovery & effective long-term pain management?

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I was diagnosed with chronic pancreatitus 4 and ahalf tears ago. I was returning to the e.r. numerous times in which , on most occasions, I was admitted due to my amalyse and lypase levels being extremely high. The pain would be unbearable. On most occasion I would be admitted, and put on pain meds for 3 or 4 days, with no food, or liquids, and told that my pancreas needed rest. I was a heavy drinker and was told that if I took another drink that I would die. Of course I kept drinking, only causing the pain to be more intense when I would have an attack. Finally after being admitted into the hospital several times, they finally did a cat scan and found several pseudocysts in my pancreas. Surgery was scheduled and my pancreas was filet'd in half, and the cysts were removed. Of course that ended my drinking days, and after a year and ahalf I was able to go back to work. However I lasted for three years, and during those three years had several attacks, but my pain meds heped me continue to work. The first of 06 my pain came back with a vengence and I found that the more stress I went thru, or the more physical I was, it was making the pain more intense. I have been on methedone for four years now, and have had to have my doseage increased. My pain attacks are more frequent and at times more severe, and at other times not as severe. However the cysts are back, and my surgeon says that they have a mind of their own, and doesn't seem to concerned, and says that it is something that I have to deal with the rest of my life. My question is this: I have lost 75 lbs since this all began. 227, down to 150. I am 6 ft tall, and nothing but skin and bones. One doctor says I have a wasting away desease. Although I am still losing weight, and still have pain attacks, is there someone out there that have had the same symptoms, and gotten better. If so I would like to hear from you. It would give me something to look forward to. Thanks
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I have gone through almost the same thing back in 1999 to 2000 when the psedocyst was removed or drained through the stomach. I was a drinker but quit for years with no problems. Now I have started back moderately and am now in the hospital with the amalyse and lypase through the roof. I believe that I am guitting drinking completely. I have also found that stress levels seem to play an importance here as well. Last year was very stressful. My father died as well as 2 other close friends, I lost my job just before Christmas. There are other things that I believe a factors as well, like the fat intake of certain foods. I have found out that pork is something that is just out. I have tried well trimmed pork but I still have problems. I have been on Dilaudin for the past 5 days and boy does that make the pain go away. Of course I am not sure of the side afftect so I need to make sure that I get off that soon. The pain for me lasts around 7 - 8 months with no letup, then it will disappear for a while. I hope that this isn't the case now, but the last time the amalyse and lypase were normal and doctors kept telling that I should not be sick even though I had the 10/10 pain scale. I hope to be getting out of the hospital in the next day or 2 and I will be seeing my gastroenterologist tomorrow. My gastro Dr is very good so he he provides me with any insight I will forward it on.
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I have had severe pain through a spinal problem and drank heavily all my life as a result because of it and was diagnosed with pancreatitus in the the last year. I was given Lyrica and Amitriptyline for nerve for my spinal pain but they work both work well for the pancreatitus pain too I was out sick from work for more than 6 months in the last year but have not missed a day since I started on them.My appetite has also improved.
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I would just like to say I find your site great, I cannot contribute at the moment as my medical expenses are very high but will soon,( I just have to claim my tax returns ) Thanks, johnm
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I have recently been hospitalized with pancreatitis for six days. The pain is endless. While in the hospital, I was given Dilaudid every 4 hours. The pain started to get there before the next dose did. Upon being released, I was given Vicodin to be taken every six hours. This did absolutely nothing for the pain. I've been using a heating pad on my back endlessly. I wish you the best in your healing process- and I understand how excruciating this condition can be. Good Luck with finding something to help the pain and share the secret when you find it. I will, too.
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I've had pancreatitis for a few years, but it didn't really bad till early 08. Same as everyone above, morphine & dilodid. One thing none of us do in America anymore is eat organ meats. Pancreas & pituitary (the master gland), then liver, thyroid, etc. Standard process carries two that Iv'e been using to rebuild my organs with good success... Pancreatropin and Thyrotropin. You also need to be diligent with pancreas DIGESTIVE enzymes (which are not the same as glandulars) BEFORE EVERY MEAL! This will take the stress off the pancreas. I have very little pain even though I still drink some. I get by with White Willow bark & Ginger 1:3 ratio resectively & the occasional Tylenol. Quitting the alchohol has been the hardest thing, even though I always feel so much better when I do. The root cause of this addiction is deep in the brain somewhere & I will ever pursue it till I've found it.

Mike
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I've had chronic pancreatitis for 4.5 years. I've had 10 surgeries in that time all related to pancreas issues. I've been on high doses of narcotics to manage the pain. I was actually on IV dilaudid at home through a picc line. I was in such pain and such chronic vomiting that I wasn't able to get out of bed and was on TPN, iv dilaudid 6mg every 4 hours and IV phenergan 50mg every 4 hours.
I had a total pancreatectomy and islet cell transplant in january of this year and it has totally changed my life. I am not diabetic b/c i had the islet cell transplant. I am down to being on only 4mg dilaudid pill three times a day and am tapering that down. I am able to eat again, not a ton, but I am able to eat and not throw it all up. I am reclaiming my life. This surgery was a miracle for me and for a lot of others that I've talked to. So yes, it is possible to get better. I was very skeptical about it before I decided to go with the surgery, I thought it wasn't possible to get better. I had such problems with doctors. But I found a wonderful surgeon (who actually listens to me!! that's hard to find!) I just figured I had to do something. I didn't have anything to look forward to.. as time went on I was just getting such a tolerance to the pain medicines. They had to keep increasing it with no end in sight. The criteria for surgery was being on narcotic pain relievers for over 6 months, and a history of pancreatitis of course..
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I had pancreatitus 20 years ago and the pain was worse than childbirth for me. I recently had another attack that landed me in ICU for about 12 days and 1 1/2 weeks in a private room. The symptoms were not the same as they were 20 years ago. Back then, it felt like a donkey had kicked me in the stomach. This time, I felt pain in my back and thought this was a back problem so I was prescribed pain killers for it. The doctor had an x-ray of my back.
While I was in the hospital (this time), they did a CT scan of my pancreas and afterwards, the doctors asked me if I had swallowed any coins. Of course, I hadn't and replied no. They told me that it looked like metal in my pancreas. I told them that I had surgery on it 3 times in the '80's which led them to believe that it was scar tissue.
I am concerned that it may be something else and that I should possibly have some more tests to determine what exactly is the metal looking objects in my pancreas.
I also found out that I had diabetes and a few months prior to this, my doctor had told me that I did not have diabetes anymore so I could eat what I wanted. He also stopped prescribing me test strips and lancets that cost only $5 a prescription. (I did not realize that I could buy them for $50 w/o a prescription then either). So, I did not check my glucose levels and my diabetes had returned with a vengeance.
? My question is "What could those metal objects be (in my pancreas)?"
I am hoping and praying that it is nothing but scar tissue.
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I have been suffering from chronic pancreatitus for the last 5 years. The first time it hit me I had no idea what was happening, I thought it was just food poisening until I called an ambulance because the pain was so excrutiating and the medic's lifted up my shirt to reveal my whole abdomen swollen and distorted (looked like alien being inside). I was rushed to the hospital and after many many hours in the e.r. being ignored the medic finally spoke up to the doctors. All of my vital organs were shutting down and I was near death. The had me watched 24/7 for 3 days not knowing whether I would make it or not. I was so loaded up with drugs I had know Idea what was happening. I was not a heavy drinker and have quit since then, but continue to have attacks. I get so very afraid everytime as it seems there are alot of doctors and nurses out here in Canada that do not realize the amount of pain one is in, and how dangerous this condition is. I recently was diagnosed with a divissum on my pancreas. Having two tubes leading out of the pancreas rather than one. The one tube being so very narrow. I have had my gall bladder out and I was feeling great for about 2 years, and now all of a sudden they have started up again. In July of this year I had a stent put in the smaller tube, then removed, doctors hoping this will widen the tube hence stop the attacks. I was released from hospital, but still felt pain 5/6 on a 1-10 scale, but managed with fentynal patches, I was on short term disability, and had just returned to work, when I was struck again on Oct 13, again more pain meds, and ultra sound, x ray, and no food for a week. It hurts so bad and I now seem to have a high tolerance for the pain meds, (they don't work). Also this tim in hospital has caused me a lot of anxiety, feeling like I want to claw my stomach apart and rip the pain out, I had to leave the hospital as they ran out of beds, and I was told I could manage at home. I am managing barely, I am unable to work, or do anything normal, including eating. Even liquid diet causes pain, and makes me feel like i have swallowed a watermelon making it difficult to breath at times. The pain radiating to my back comes and goes, where does this end? I have been told I may have to deal with this for the rest of my life, does that mean narcotics forever? I am sick with fear everytime I have an attack and I feel for those stories I have read, know one really understands the pain we are in, its almost indescribable. I am currently looking at long term disability, I used to be an active fun loving person who enjoyed life, now its walking on eggshells everyday. My next step is going to a nutritionist to see if they can help. Finding the strength to deal with this is becoming more and more difficult, especially with the anxiety I am feeling......I am lucky to have the support of my husband and children, but cant stand to see the worry in their eyes anymore, so I try to be strong and not let the pain show but as those that suffer know its not easy. All I can do is "one day at a time".
You are not alone, there has to be help somewhere.
Brigitte
Calgary, Alberta Canada
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Hi, I have also had pancreatitis for the past 3 years. The last time I went to the hospital was Sept. 13th. I spent 3 hours vomiting bile, moaning and groaning in the ER after my husband brought me there. The nurse kept telling me to breathe slowly because I was hyperventilating from the pain. She also told me to try to stop screaming because I should be mindful of the other people in the ER. When you are in that much pain, you don't care what anyone else thinks. You just want them to give you some morphine to put you out of your misery for awhile. After I got into a room, it still took another 2 hours to give me some morphine. Then they only gave me 2.5 mg, which did almost nothing for the pain. I complained. Then sometime after they finally were giving me 10 mg every 4 hours with a 2.5 mg shot if I wanted it after 2 hours. They didn't need to ask me what my pain level was when I arrived there. I would have said a 10 with all of my screaming. I don't know why they make you wait so long to give you any effective painkillers when they can visibly see you are in so much pain when you arrive. They told me I should have taken an ambulance. I didn't because I live like 5 minutes from the hospital, so it is much faster for my husband to bring me there. The nurses said that the medics could have given me something for the pain if I had taken an ambulance. Is that true?
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That is absolutely not true. For some injuries paramedics can give meds for pain relief, but abdominal pain is NOT one of them. It's because giving pain meds can mask some symptoms of what is going on inside the abdomen and make it much harder if not impossible for them to figure out what is really going on.
I agree, 2.5 mg of morphine is as useless as spitting in the ocean.(I always loved that phrase).
Also Morphine can make the pain of pancreatitis even worse because it causes spasms of the sphincter of oddi (one of the ducts/valves) that is connected with the pancreas. So staying away from morphine may be a good idea for you. I'm always given Dilaudid when I'm in the hospital. It works much better and doesn't have the side effects that Morphine does with the pancreas.
hope that helps
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Thanks for your info. I didn't know that morphine could cause problems for your pancreas and as far as I know it hasn't done that to me so far. I have only been given morphine or demerol when I have gone to the hospital. They don't give demerol anymore. The last time I went to the hospital, I asked for that instead of the morphine because I found that it worked better for me. I have never been given Dilaudid. The only side effect I knew of with morphine was that you could become addicted to it. I don't feel that applies to me because I only use the morphine when I am in the hospital and I usually just spend one week in the hospital each year for my pancreatitis.
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HI GUYS,
I AM A SOUTH AFRICAN IN AUSTRALIA ON VACATION. I ARRIVED IN DEC 2008. ON 07 JAN 2009 I WAS ADMITTED TO E.R AND DIAGNOSED WITH PANCREATITUS. THIS IS THE WORST PAIN THAT IVE BEEN THROUGH IN MY LIFE. IVE BEEN HOSPITILISED 3 TIMES IN 2 MONTHS . AS A RESULT I HAVE NOT BEEN ABLE TO ENJOY MY HOLIDAY AND MIGHT HAV A OPERATION SOON. I CANNOT LEAVE THE COUNTRY BECAUSE MY DOCTOR SAYS IT IS NOT ADVISABLE TO BE ON A LONG FLIGHT. I HAD TO GO THROUGH THE STRESS OF APPLYING FOR A MEDICAL VISA WITH IMMIGRATION, WHICH RESULTS IN STRESS THAT EQUALS MORE PAIN. MY MEDICAL TRAVEL INSURANCE IS EXPIRED AND IM IN A SITUATION WHERE I NEED MORE COVERAGE. HOWEVER MOST MEDICAL AIDS D
'NT COVER PRE EXISTING CONDITIONS, WHICH IS MORE STRESS FOR ME. I PAY CASH NOW FOR MY MEDICATION AND GP VISITS. THIS WHOLE EXPERIENCE HAS BEEN A NIGHTMARE. I SPEND MY DAYS HIGH ON TRAMADOL AND OXYNORN WAITING PATIENTLY FOR MY PAIN TO GO AWAY, BUT TO NO AVAIL. THE ONLY THING THAT KEEPS ME GOING IS MY BEAUTIFUL NEW PARTNER, JUSTINE. THANX FOR THIS INFORMATVE SITE
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Brigitte I have read your story and sympathise 100%./ My 25 yr old daughter was diagnosed with Pancreatitis 2 yrs ago..it is so difficult to see her suffer so very much. We are also in calgary...I'm wondering if you know of any support/info groups in the area.
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