1. Community
  2. Gut, bowel and stomach
  3. Pancreatitis and Pancreatic Disorders

pancreatitis

Posted , 5 users are following.

JTB63040
JTB63040

I have been battling pancreatites for about 7 yrs. I normaly have 1 bout a year that last 10 to 12 days. I end up in  the hospital and dont eat for days at a time and get pumped full of pain meds. I also have liver diasies (non alchol realated). Last march I had a bout of pancreatitis again but this time it did not go away. I have been fighting it ever since. I had my gailbladder removed I have had 5-6 ERCP's with stints and also had a J-Tube put in so I could get food. My problem is that none of my doctors can figure out why I have this and none of them know how to fight it except to not let me eat. Every thing they have done has not worked. Now they want me to go to a pain clinc because they dont think it will ever go away. I lost my job and cant find another one. Nobody wants to hire somebody that has been out of work for a year because they were sick or are sick.

I have  been told that I will need a liver transplant in about 10 years or less. I guess i just needed to vent a little. 

1 like, 13 replies

13 Replies

  • les59996
    les59996 JTB63040

    Posted

    I too have been battling CP for over 12 years.

    I have episodes every few months, but the pain never goes away. I am under the pain clinic and they do a fantasic job for me. Yes I am addicted to Opiates but who cares.

    Of course not eating is the only sure way of not making it worse. But this isn't healthy. Years ago I was prescribed Creon which does actually work with the dose. Depending on whether it is the 25000 variant or the 40000 one, I take approx 300,000 units (12 x 25000 or 8 x 40000) daily in total. A larger dose for a big meal smaller dose with a snack.

    The reason they work is that as soon as you put food in your mouth a signal is sent to the pancreas to start working. Taking the Creon just before any meal fools the pancreas into thinking that it doesn't need to do any work. It's the pancreas working that causes the pain.

    I have found that they work wonders, I can eat anything and everything in as much portion size as I want.

    Unfortunately one of the side effects of CP is Type 1 diabetes. That again using the right level and type of insulin means that you can lead as normal a life as possible.

    Oh yes - DO NOT DRINK ANY ALCOHOL - its can be a killer!

    The main constituent is Pancreatin taken from a pigs pancreas.

    • Pam069
      Pam069 les59996

      Posted

      Hi les, what do your episodes feel like? You say you have episodes every few months? I have been battling some sort of upper abdominal pain for 6 years now. I was diagnosed with ibs but I really don't think it's that. I have episodes/flares every 6 months or so. My pain is a gnawing/burning constant ache in my upper abdomen, about 3 inches above my belly button. It's constant, it will last a few weeks to months then goes away again for months, at my wits end as to what it could be....
    • les59996
      les59996 Pam069

      Posted

      Nope, my CP starts in the lower chest area as a dull ache, then it progresses to a sharp stabbing pain which then travels around my back to where the sholder blades are. To try and relieve the pain I have to arch my back and then stoop forward. Much easier to walk with a stoop.

      There is a very simple test that the hospital or a doctor can do. A blood test. They look for the amalaze levels. Sometimes it may be more appropriate to take arterial blood from the wrist to get a definite diagnosis. A CT scan will follow which should show up the inflamation and any puesodocysts.

      With mine, if 100mg of Morphine and a bottle of Oramorph doesn't control things - it's off to A&E as an emergency 999 that will require IV pain relief and maybe 2/3 days on the ward to get it under control.

      A severe case of CP can in fact kill you. My last time was touch and go, I spent 3 months in hospital most of the time in the High Dependency Unit as blood pressure was sky high, (something like 200/200) with all of my organs shutting down. My wife was called in twice in the middle of the night as they didn't expect me to survive. I went from 14st to under 9st couldn't walk and for over 8 weeks I didn't eat a thing, I was fed through a central line in my neck. 

      Now with careful management, I am a lot better.

       

    • Pam069
      Pam069 les59996

      Posted

      Oh my gosh you have definitely been through a lot. I guess my pain isn't my pancreas then, I guess I am just exploring all possibilities at this point & since your pancreas is in this area I just thought, maybe? Thanks for the quick reply and info 😀
  • stupage
    stupage JTB63040

    Posted

    So sorry to hear about another in the same shape as me. I've been sick with pancreatitis for 8 years now, dependent on pain meds for all that time, some years better than others, but I've not been able to work at the business I own. My wife has run the business for most of the last four years, and 3 months ago she got sick and tired of taking care of a sick and tired man, and left me. I don't know how much longer I can get by with no help.
    • manda1030
      manda1030 stupage

      Posted

      It is hard for people to understand that are not going through it...

      . my husband gets so frustrated cause I can't go anywhere or do what I use to. I wouldn't wish this on anyone!!! So many hugs to you and always here if you need a shoulder!!!

    • les59996
      les59996 stupage

      Posted

      As a matter of interest seeing that you mentioned being self employed and unable to work, have you managed to claim either DLA or the new replacement - PIP?

      I wont go into my situation at the moment as it is drawn out and has left me totally depressed. But, trying to claim for non means tested financial help for CP is a long  standing problem that CP sufferers. I also post on the Pancreatitis Forum where very few are granted any form of benefit for CP. According to the government and their A to Z of conditions, CP is seen as no different to constipation!!

      We all know it isn't but............

  • manda1030
    manda1030 JTB63040

    Posted

    Understand your pain so much!! You brought teats to my eyes. This disease is awful!! I try so hard to be happy. I have been fighting 15+ years and I am exhausted........ Just wanted you to know you are not alone!!!! Sending hugs and feelings of hope your way!!!
  • JTB63040
    JTB63040

    Posted

    I have aplied for financial asistance but have not got it yet. I just dont under stand how nobody can say what is causing the problem or why I have it. i am worried this time that the pain is never going to go away and i am just getting worse. I am at the point that i just dont want to deal with it anymore. I am going to see a Phycologist this week. My family is worried that i might harm myself.

     

    • manda1030
      manda1030 JTB63040

      Posted

      Please do go!! I my self have PTSD from being sick so long. I am on Lexipro and klonipion. I know how lonley this disease can be.... The pain is never ending. Some times I get up at night and cry a lone. My family is scared also I have had trouble getting a good Dr. Even though I have been diagnosed CP. Know I really do care and wish you the best keep fighting!!
    • les59996
      les59996 manda1030

      Posted

      In this day and age Pancreatitis is still in the unknown.

      Only over the past couple of years has any real research been done. There is no cure. Doctors still don't understand it. My GP had to read up about it.

      Very few hospitals have the staff and expertise to deal with it. From memory, there are only 4 hospitals with a designated unit - with the main research and development being carried out by the Liverpool under Prof's Sutton and Neopoltomas (my consultants).

       

    • manda1030
      manda1030 les59996

      Posted

      You are so right that is why I have to travel 6 hours to get help. I was told I could not have the procedure to stop my pain. Because my body rejects the enzymes. I have to go the end of this month for another procedure on my pancreas. Travel is hard on me cause I also have RA. They really need to study this more. Makes quality of life for many of us unbearable! Hugs and hope to you!!
  • william65322
    william65322 JTB63040

    Posted

    I'm sorry to hear about your pain, we all know what you are going through.  I've had my CP for about 4 years and like you I was on some pretty hefty pain medicines.  I went to a pain specialist and they implanted a Spinal Cord Stimulator (SCS).  The SCS has 32 small electrodes that are attached to the spine.  I have a remote control that has many programs and allows me to change the settigns to target where I am hurting.  Simply put the SCS tells my brain that you do jnot feel pain, but rather a tingling sensation.  It does not cure CP, but it has given me a better quality of life.  I do not have to take large amounts of pain killers any more.  Hope this helps and my prayers are with you. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.