Help... Chronic pancreatitis can't eat or drink doctors don't seem to care

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Hi I'm new here and feeling very frustrated i have chronic pancreatitis and it is seriously affecting my life. I live in pain daily and have almost weekly attacks this has been going on for about 1 and a half years now and i don't know how to get better it's been getting progressively worse i have developed a cist and my splenic vein is kinked causing tremendous pain . Am i the only one who has this condition? I've been in the hospital 12 times since this has began I've seen 2 gastronologist and they both say i need pain management and have referred me but 90% of the doctors will not give pain meds because of the opioid crisis how am i supposed to manage daily pain and starvation and dehydration? If anyone has any suggestions or suffers from this please let me know im at my wits end

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  • Posted

    I have chronic pancreatitis due to a congenital anomaly called Pancreas Divisum. I was born with two pancreatic ducts that never fused together. I suffer from pancreatitis symptoms every day. You need a pancreas specialist not just a GI specialist. If you’re not already on digestive enzymes then I suggest you ask your doctor about them. Usually when having symptoms you need to rest your pancreas. This means don’t eat solid foods for a couple days and stick to clear broth. Slowly work up to low fat/sugar foods. I eat an orange a day because it helps with inflammation but drinking orange juice upsets my stomach (it’s weird). Stay very hydrated! I’m sure you know to stay away from alcohol. You may also want to see a dietitian because your body can develop food intolerance. I have to take nausea medication daily as well as acid reflux medication. Tylenol will also help when your pancreas is inflamed. Without seeing a pancreas specialist it’s hard for you to get treatment. Also heat packs on your abdomen will help you. 
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    • Posted

      Thanks shortie79 i am currently on 90,000 units of creon,and omeprozeal. I have been alcohol free since November and have already missed a few months of work this year if these flare ups keep happening im worried I'll lose my job this disease is the worst i hope someday to have a somewhat normal life again.

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    • Posted

      May I ask how you were diagnosed with chronic pancreatitis? What tests were done to get to your diagnosis? In my case my GI specialist thought my symptoms were IBS related even after the MRCP showed I had two ducts. I had never been diagnosed with acute pancreatitis and because of my age the specialist dismissed the possibility it could be my pancreas causing me so much pain. Due to my location, I was advised there were no doctors in my area that could treat my condition. I have to travel to see my pancreas specialist. My first visit with the pancreas specialist, he wanted to do an ERCP to confirm diagnosis of my two ducts (rare condition) but he also said it’s the only procedure that really looks at the pancreas and he would be able to treat me (if there were any stones or cysts he could address them then). However they don’t usually just go and do an ERCP because the risks of causing a pancreatitis attack. I didn’t have any stones or cysts but my ducts were so narrow they were getting clogged and bile was going down the wrong duct. He put a temporary stent for my first ERCP. I’ve had five ERCPs done. It’s also how I was diagnosed with chronic pancreatitis. I was able to speak with another patient and he uses the ERCP as treatment for chronic pancreatitis too. I don’t know exactly what he does but I do know it was helping the patient. My pancreas specialist also advised me there’s an abdominal nerve block called the celiac nerve block. It’s supposed to help especially for people who suffer with chronic pancreatitis. I have not tried it, as my body rejects nerve blocks due to another medical condition. Have you tried keeping a journal of your attacks? I have found certain foods trigger an attack for me. I try and keep a journal of what I ate and how I felt afterwards. If I felt crappy then I stay away from whatever food I ate. It’s almost a battle trying to figure out what foods your body is okay with. There’s some days I cannot eat, so I drink Ensure to get some sort of nutrition. Anything high in fat will cause me an attack. I’m so sorry you’re going through so much, I hope you can get some sort of relief soon. 
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    • Posted

      Shortie i was diagnosed with an endoscopic ultrasound that found ireversable changes to my pancreas also blood work when i have an attack my lypase goes through the roof. The attacks are getting closer and closer together i have been maintaining a low fat high protein diet and have been keeping a journal. I work in construction so i need a lot of energy on a daily basis and cannot keep up due to pain with eating and drinking i switched gi's and last Thursday left the doctors feeling confident that we had a plan with the increased creon and pain management but had an attack that same day that resulted in hospitalization again and still can't get into pain management to me it seems the doctors aren't taking this very seriously and it is very frustrating because they just keep telling me to go to the hospital everytime it happens and not finding a long term solution

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    • Posted

      Honestly I haven’t had any long term management. My ERCPs have been every other month. When I spoke with my doctor’s other patient she was getting them every six weeks. I think treatment may be based off of how damaged your pancreas is. However, we’re all going to experience different symptoms. You working in construction I can understand your frustration. 
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    • Posted

      Patrick it occurs to me that the only drug that has ever worked for my acute pain is marijuana.  Eaten not smoked.  I've been given some pretty serious drugs throughout my life but one day when I was in pain and my plumber was here fixing my sink it was very obvious to him.  That evening he came down with some little cookies he makes from high grade head and handed me the bag, lol.  He has shrapnel in or near his spine and suffers severe pain and couldn't do his job without it he said.

      Anyway I've never had it before in any form and before bed I broke one tiny, about one inch round cookie, in half and ate it.  Within 15 minutes I felt like I'd been hit over the head with a brick and went to bed.  I slept all night and woke pain free.  It had broken the spasm that my doc's tell me happens when my pain cycle starts.  It lasted weeks, a miracle.  Just saying.  I don't know if it's legal where you are, it's just coming in here but still illegal so haven't used it since but it might work for you too.

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    • Posted

      Reefsider

      You make a good point. Even one of my doctors has recommended it to me. I’ve been on pain medication for a number of years due to another medical condition. I have read many case studies about how doctors will put people on two different pain medications at one time because they send different receptors to your brain. I tried this approach and it worked for my other condition but it’s also when my attacks started and never let up. Needless to say I stopped the second medication. It was a blessing in disguise. I probably wouldn’t have a diagnosis now if I didn’t try the new medication. I’m the type of person who hates having to take medication and I get treated like an addict if I go to the ER. The funny thing is, I don’t feel anything from my meds and can’t understand why people take them to get “high”. I don’t know if you have tried CBD oil but it’s supposed to help with pain without getting you high because there’s no THC in it. I know a friend who suffers from MS and it helps her. I don’t know if CBD oil is legal everywhere. I was scared to try an edible because I didn’t know if I would be okay to digest it. I’m glad you were able to get relief. 

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    • Posted

      Hi Patrick,

      Please be aware that the PPI omeprazole will put you at  risk of developing a Vitamin B12 deficiency

      The gastrointestinal symptoms of vitamin B12 deficiency may include:

       A sore tongue

       Appetite loss

      Diarrhoea and/or constipation

       Stomach pain Do you have problems with constipation whilst on Creon?  I take 110.000 per day and find that sprinkling linseeds onto my breakfast cereal helps.

      I am not a medically trained person and I wish you well

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    • Posted

      I also hate taking meds except for what's absolutely necessary.  Reason being my other weird disease when active can suddenly cause a negative reaction to just about everything, drugs, foods, anything. 

      I tend not to take strong painkillers, I take 6 Osteomol pd, a slow release paracetamol which sounds pretty lame but on a daily basis when neither my other disease or my CP is active it tends to take the edge off.  I also have fibromyalgia and other hurty ills.  I've been in pain all my life so I'm just used to a certain level. 

      My doc's have prescribed morphine which stays in the cupboard and when I'm having trouble managing the pain I go into hospital for a couple of days of morphine IV, which never touches it even a little so I tend to argue about going in but hope for a miracle every time and in the end I go along. 

      When in attack (my other disease) it's a life threatening situation and I have difficulty breathing because of the pain and tend to lose consciousness and am usually in ICU because my organs can shut down, it'a a fun disease lol.  

      Anyway when I told my local doc about the plumber's cookies he wrote down his recommendation on a piece of paper saying it felt like it was the best prescription he'd written me lol.  He wanted me to have half a cookie three times a week.  I decided that I'd only take it when the pain was unmanageable, just to break the spasm.  As I said before I haven't needed to, I've not had an attack of my other disease for ages and I can manage the acute CP pain pretty well.

      I've not tried CBD oil, I had a quick look online and will ask my local doc when next I see her.  It's a hassle starting something new, I need to be monitored because I can have a negative reaction but I'll give it a go and keep some at home if it's ok.  Thanks for telling me about it Shortie.

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    • Posted

      Hi Clive, thank you for the PPI info.  I request a FBC 2 or 3 times pa to check for deficiencies because of the malnutrition associated with my CP prior to diagnosis.  I had a test about 5 or 6 weeks ago and haven't heard back from my doc's office so assume all is tickety boo, however....  I've been having problems with sore tongue, like ulcers, a lot in recent months.  They go away but return in about a week or so, I have what feels like 3 currently, very ouchy.  

      A few years ago I had low B12 and bought the gear from the pharmacy to give myself shots for awhile and level returned to normal.  I have to go to doc's office tomorrow for something else so will make appt to see my doc about it.  Thank you

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    • Posted

       I don't think that B12 and Folate (B9) are automatically included in an FBC and if you have been B12 deficient before and with your (admitted) malnutrition and PPI you may well be deficient again.

      Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

      Weakness and fatigue

      Light-headedness and dizziness

      Palpitations and rapid heartbeat

      Shortness of breath

      A sore tongue that has a red, beefy appearance

      Nausea or poor appetite

      Weight loss

      Diarrhoea

      Yellowish tinge to the skin and eyes

      If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

      Numbness and tingling in the hands and feet

      Difficulty walking

      Muscle weakness

      Irritability

      Memory loss

      Dementia

      Depression

      Psychosis 

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    • Posted

      I am a little similar to you. I am very sensitive to medications. I’m allergic to most pain medication, therefore I can only take a few. Due to a nerve condition my nerves misfire and contract my muscles. I’ve had over ten nerve surgeries and even “killed” a nerve in an attempt to alleviate pain but I had the opposite affect. I had hypersensitivity instead. When I stand or sit up for longer then ten minutes my feet and legs go numb. Usually I just have the constant pins/needles feeling, so I have developed a certain tolerance to pain. When my pancreas started up two years ago I knew something was wrong because it was pain I couldn’t manage. If I go to the ER then almost always I’m treated like an addict especially because I don’t react “normally” when given IV medication. I take the same medication at home and had never felt anything from it. Then because I complain that I’m still in pain (blood shows nothing and most ER doctors around my area don’t know CP doesn’t show in blood) they treat me horrible. I literally have to carry a letter from my pancreas specialist advising them how to treat me if I go to an ER. It’s not worth the hassle so I try not to go unless I am desperate and nothing else at home is working. This is why I joined the forums … to see what works for some people. I know we’re all going to experience different symptoms but hopefully I can gain more knowledge and manage my pain better in the future.  
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    • Posted

      I don't know where you are Shortie, my specialist doc for my other disease has trained ER at one of our teaching hospitals on how to treat me. He issued standing orders regarding drugs and general environment required.  They are wonderful and follow his protocol to the letter unlike other ER's I've attended.  Unfortunately those orders go out the window once I'm on a regular ward when ICU isn't necessary.   I cannot be upset by anything when other disease is in attack mode, stress increases my symptoms dramatically so standing orders are essential.

      Perhaps you can have your doc set up some standing orders with your local ER so you don't have to add to your stress by arguing with the ER teams you encounter.  They just go to the computer and read, easy peasy. 

      Pain management is tricky, especially for adults new to it. 

      As a child I learned to manage by tricking my brain.  I'd take myself to another place mentally to block it mostly.  When that disease is active I too have paradoxical effects with drugs especially which have to be withheld or monitored very closely.  I've even had minor surgical procedures without anaesthetic as a result which is scary and usually results in theatre staff in tears lol, but mostly they try not to touch me, literally.

      I'd certainly give pain management clinics a try there are always new methods coming along and one might work for you.

       

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    • Posted

      I’ve tried pain management for my other condition. I’ve done spinal blocks, epidurals and even a spinal cord stimulator. They give me a “pain” medication while doing the procedure but my body rejects it, so I feel everything and I end up enduring more pain just in an attempt to obtain relief. I’ve been through the ringer and I just tell myself it wasn’t meant to be. I also try to distract my mind from the pain. It really helps me! Unfortunately for the pancreas it was trial and error and then my GI specialist told me there’s no doctor in my area that could help. I have to go to San Francisco which is an hour away. I don’t mind traveling because he’s a great doctor and he’s helped me a lot. I’m able to control my pain now more than I ever was before. I don’t blame the doctors at the ER either, they cannot treat someone when they aren’t experienced in GI nor have the equipment to do so. I had to learn the hard way. I did get my doctor to write my letter so if I do have to go to the ER they can pull it up but I just don’t like to go in my area and traveling while in pain is hard. 
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