I've had my fourth acute pancreatitis attack in one year

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 August 30 a year ago my roommate called 911 I'm 61 years old and they found out I had acute pancreatitis they were very rude in the hospital and could see my records from seven years ago that I had been admitted to another hospital for three weeks because I did used to Drink and a damaged my pancreas .( I have a sense of humor but most people are winos and California )  they told me to go home rest drink plenty of fluids and take painkillers or if I really wanted to I could stay there a week and they would give me pain medication and IVs it was my choice I opted out of the hospital as a matter of principle .  Finally had a special test done in January and they found out I have pancreatic stones with in my pancreas . Had another attack that was bad after my mother died in April went to the hospital was there for six hours in the ER they totally dismissed me took no scans nothing and said they didn't know what my problem was and released to me .  I've been under a ton of stress and just moved on Sun.  And had to Classic  symptoms of immediate vomiting the next day stomach pain taking pain medication every two hours it was so bad and vomiting the next day long story short I'm at a loss I've lost two jobs now because I do caregiving work,  retail on weekends and work for the county I live in as a substitute special ed teacher and they don't care they just label me as being sick all the time .  I got up and drove to meet with my boss on Thursday was feeling weak and tired and had to leave because I started throwing up on the way home again .  And my positive mind I'm going to have to start job hunting and yesterday did a simple task of trying to go to the grocery store and came back and almost passed out from the exhaustion , just to make sure I had fruit juices on hand plenty of water some applesauce the regular stuff and my own Gastro Doctor Who is a complete moron just keeps telling me to go to the ER and they do nothing . I sent a message to my regular Doctor Who is great and he started me on Creon to take three times a day with food has anyone ever heard of it I just started it yesterday ?  And 2000 mg of vitamin D but I'm still exhausted . Now that I moved in and settled is it realistic to think another week or two for recovery I know I wrote a lot and I'm new to this group but I really need peer support I have no one . Everyone I talk to just keep saying G I hope you feel better and I have a lot of pain on my left side but I think that's because my hip and back are so bad .  I'm alone with no spouse or any support system and I really don't think the doctors care or know what they're talking about I'm hoping to Creon and vitamin D works but my question is , at my mall job which is all I have right now should I be honest and tell them no work this week I truthfully think I need one week of complete rest and then I may start to feel better .  I'm a cancer survivor twice other parts of my body breast and lymph nodes so I worry 

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  • Posted

    Sorry to hear about your pain my husband suffers from chronic pancreatitis... no fun! Some people get relief from creon, but the dosage has to be adjusted untill you find the one that works for you. If you feel your GI is not on your side please dont give up and find a new one. I would ask to get your gallbladder checked. I had gallstones about 16 year's ago and had to get my gallbladder removed, now i feel better. My number one and best advise is to see as many doctors till you get an answer or get help. As far as your job get a doctor note, find a new GI and rest up.... if posible. Wish you the best and sorry for your pain. God willing you will be okay.

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    • Posted

      Thank you Elizabeth , I asked about my gallbladder in January and they said there was no problem with that but because my health insurance is bottom of the barrel in California it takes months and months for referrals for everything it's just a nightmare

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  • Posted

    Sue having pancreatitis is awful, especially at the beginning when you don't know how to handle it.  You need a new GI doc by the sound of it, that should be a priority, hopefully you can find one who actually specialises in the pancreas, they're a rare breed but are out there.

    It sounds to me like you might have chronic pancreatitis given pancreas damage was found 7 years ago, especially if you weren't under a GI at the time.  Chronic Pancreatitis is ever present, it can be managed but it doesn't improve, it gets worse over time as the pancreas continues to malfunction.  However, it is important to know that it isn't a death sentence.  Some think it's the end, it isn't especially if managed properly.

    First thing to know is that when you have an attack stop eating for a couple of days, you have to give your pancreas a rest.  When admitted to the hospital with an attack the patient is given IV fluids/nutrition and pain management.  The aim is to rest the pancreas.  Once you know, when the pain/nausea/vomiting or whatever symptom is your light bulb signal occurs, you can manage many, but not necessarily all attacks yourself at home.  If symptoms are very bad it may mean there is an added complication, like a blockage, and you will need to go to the ER.

    Ok so this is what the pancreas does;

     1) secretes directly into your small intestine an alkaline mixture of salt and enzymes such as trypsin and chymotrypsin to digest proteins, amylase to break down starches, and lipase to aid the digestion of fats.

    2)  it secretes the hormones insulin and glucagon directly into your bloodstream to control your blood-sugar levels.

    The problems occur when the pancreas is damaged, it malfunctions, this is serious, this is what is happening to you.

    Pancreatitis is a disease characterized by acute or chronic inflammation of the pancreas.  It results in pancreatic juices accumulating in the organ, which may damage the pancreas or lead to the pancreas actually digesting itself.  Sounds pretty nasty and is, it's what causes the pain and digestive issues.

    You need to adopt a low fat diet and stop all alcohol forever from right now.  Stress can trigger it so adopt strategies to control it.  You need to see your GI frequently initially until all your issues are found and addressed.

    Creon is your new best friend.  Creon taken just as you're about to eat, anything, anything at all, helps to stop your pancreas misfiring, the Creon provides the enzymes you need to digest food and can prevent an attack.

    Dosage is by trial and error.  You don't need to run to the doc everytime to get permission to change the dose, it's not a drug in the sense we usually associate meds ok?  Sooo, when I first started I needed 80,000 plus now things have settled 30,000 to 40,000 seems to work for me most of the time.  Creon only works for 30 minutes so if having a long lunch or dinner you'll need to take more after 30 mins, it's ok to do that, it's what my pancreas specialist advised me to do and he told me many don't know that and begin to doubt Creon effectiveness as a result.  It works!  When you have a snack, anything at all, however small, take half your usual dose, you don't want your pancreas stirred up. 

    Now about hospital.  I see my specialist via a clinic at one of our best hospitals, they have my records on file, if I kick my toe the ER would know about it because it's right there in my notes, however....  My doc told me we have to get my pancreatitis sorted properly, managed as best it can be because even if I presented at his hospital's ER he said all they'd do is give me painkillers and send me home, even though they'd have my history right in front of them.  That seems to be the common treatment, it's not about being ignored particularly, it's not a 'you' thing when they send you home.  Moral there is to make sure you and your doc have got your particular pancreatitis sorted as best it can be.

    Sorry this is so long but hope it helps, continue to ask questions.  Good luck Sue regards Reef.

     

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    • Posted

      I'm an RN and was just diagnosed with chronic mild pancreatitis. I had a pain for 18 years my husband who have been married to for 18 years went with me to my very first appointment with left upper quadrant pain I've been told for years it was irritable bowel syndrome and treated it is such that was in my hometown I have since moved and have been told here 18 years later that it is pancreatitis the pain is horrible I just had my very first attack two weeks ago which is extended until today and still continues. I think you wrote that you don't know what to do your first time I'm learning by speaking to the nurse at the G.I. office and reading your reply I think you so much. I'm a cardiology nurse not a G.I. nurse so I'm still in the learning process at this it is very scary I worry that it could lead to pancreatic cancer and I know that is definitely a death sentence. I was checked for the pancreatic cancer marker which was negative but having this attack scares me and when I read your reply that the pancreas can digested self scares me as well I will do my best to take care of myself and go on a liquid diet for a few days to rest the pancreas. Thank you again.

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    • Posted

      Hi Patty I didn't intend to scare you or anyone else either so I apologise for that. 

      Patty keep your fluids up and if you can tolerate some broth or anything else low fat without pain give it a try.  Key most of the time actually is not to eat too much in one sitting.  Several smallish meals a day works better than having large amounts in one sitting.

      Do ensure your GI specialises in the pancreas if you can.  I assume you've had tests to back up the diagnosis and hope your bloods were fine.  Malabsorption is common and can result in vitamin deficiencies which can cause other problems so ask about that.  My malabsorption issues are pretty bad I still have malnutrition after months of treatment and I have to take vitamin supplements. 

      We're all different, have different issues it's a matter of getting everything sorted and sticking to the no alcohol, no cigarettes, reduced stress, low fat diet regime. 

      Recently I posted a link to a recipe book written by a woman on the Board of the American Pancreas Foundation who happens to produce recipe books for a living.  It's really good with lots of variety.  Eating shouldn't be boring so check it out.

      https://www.pancreasfoundation.org/wp-content/uploads/2013/11/NPF-Cookbook-2015-Update.pdf

      Take care of yourself, I hope that pain settles soon.  regards Reef

       

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