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

Posted , 10 users are following.

patrick44381
patrick44381

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

2 likes, 21 replies

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  • Reefsider
    Reefsider patrick44381

    Posted

    Hi Patrick I'm sorry you're suffering so much.  I have chronic pancreatitis, auto immune type, and I feel very lucky at this point that I don't have the pain issues that so many others have.  I'm not bragging I just want to point out where I'm at with this disease. 

    I was born with another disease that is extremely painful during attacks and because of the extreme pain my doctors have always told me they're more interested in keeping me comfortable. 

    The thing is opiates never touch my pain actually and I've never experienced that so called 'high' or spaced out feeling in my life and my doc's tell me they're not concerned about addiction with me.  I'd love to feel the high a little sometimes lol. 

    Anyhoo I think pain instills fear in many medicos or more the possibility of addiction to drugs, and I get that but I believe we aren't supposed to suffer either.  

    I wonder if there's a medical specialty that deals with chronic illness, like oncologists who deal with cancer?  I don't have a clue.  Oncologists tend to personalise treatment to suit individuals depending on their symptoms and I think perhaps those of us with chronic and potentially extremely difficult situations need a similar approach. 

    My doc specialises in the pancreas and knows his stuff however he tends to stop short of pain management.  Pain management clinics are great too however they tend to have stages which can mean a lot of time trying different methods of management before getting down to the business of actually treating the pain with drugs.  Is there a gap or am I just ignorant?

    Our nurse with CP might be able to throw some light hopefully if he reads this.

    Sorry I'm not being very helpful patrick.  All I can suggest is being really strict with your diet, spacing small meals over the day rather than large serves and keeping up with your creon.  I take heaps too 80 - 100k everytime I look at food it seems. I also take a PPI, do you, I find that settles down the nausea and is like oil over troubled waters so to speak.

  • Psychdoc
    Psychdoc patrick44381

    Posted

    Dear Patrick,

    I am so sorry to hear about your CP and pain. I have CP from a birth defect of my pancreas called a divisum. You need to find a gastroenterologist who has a good working relationship with a pain doctor who will prescribe the medication that you need. You might have to change your health insurance if you are able to get an appropriate gastroenterologist and pain doc. Be careful when going to the ERs for pain because you will be pegged "a drug seeker" which is totally uncool and inaccurate. Try to find CP support group that is in-person, as opposed to on-line. You might gain good friends, information and referrals. Lastly, I hope that you have a family member who is supportive and who is there to share your ups and downs. Don't give up and don't drink alcohol as you will have more attacks. You are in my prayers.

    • patrick44381
      patrick44381 Psychdoc

      Posted

      Thanks psychdoc i will try and find a in person group also one of the reasons i switched gi docs is because exactly what you said they think im a drug seeker in fact it's the opposite i hate the opioids but they seem to be the only thing that takes the pain away im coming to realize that im probably going to deal with this rest of my life. I think it's terrible that the doc's basically shame patients with chronic pain and consider them drug addicts.

  • Aewinborne
    Aewinborne patrick44381

    Edited

    Hey Patrick my name is Aquilla and i've been going through the same thing for about a year and some. I also have been in and out of the hospital and letting these doctors push me of to another specialist so they can trick or treat off of my weak insurance plan that’s ssupposed to be a dual plus plan.

    				When they see certain types of insurance you will only get a minimal level of care.  I too am in pain i've been swaying back and forth stumbling over things and feeling like crap for over a year now, i've lost almost 100 lbs  which i was trying to lose weight any way.  But after i had different variations of covid the weight started flying off.  I believe (LONG COVID) triggered my pancreatitis  and caused a flare up  it is known to trigger underlying health issues  that has been in remission.   I was 268 got down to 248 on my own but after the last episode of covid it started flying off now i'm like 170 and im trying not to freak out!

    Oh and not to mention the appointments are months apart someone can die within that time. They're just sucking up our benefits because they can. They tell you the minimal of what's going on with and you have to figure out the rest . I'm going to research some legal advice and you should do the same! i'll keep you in prayer......stay blessed!

  • Aewinborne
    Aewinborne patrick44381

    Edited

    Hi Patrick i'm having the same issues so i blend some cambells chicken noodle soup and skimmed out the noodles that didnt dissolve and add way more water than the directions called for and sip on that and i put some tumeric in it for inflammationtion it help calm my stomach. I use the canned soup's broth because the plain boxed broth taste horrible to me.

    The sodium is high that’s why you have to dilute it to your taste. I do this method only when i'm too tired to make my home made broth.

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