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36 years old and had pancreatitis since I was 20!

Posted , 5 users are following.

donopete
donopete

Hi everyone, my name is Pete and I am 36 years old. I live in the UK and I have suffered with pancreatitis now for nearly half my life! Since I was 20 actually. It was assumed at the time, that it was due to alcohol but having spoken to many, many consultants and specialists over the years, the idea that I could have brought this horrible disease upon myself at such an early age is not a popular opinion by any means. It is now presumed that it was purely idiopathic or in other words, no known cause or reason. 

Anyway, I have just signed onto this site and as I have said to a lady called Wendy, should anyone have any questions about pancreatitis...whether it be about medications or symptoms or problems when in hospital or just a general chat, I am more than happy to try and help anyone should they ask 😊 as I have had it now for so long, I feel as though I am able to try to help anyone with this horrible condition or even people whose loved ones have it. So please feel free to reply to this and I will try and reply as soon as I possibly can. 

Hope you are all keeping as well as can be expected. 

Pete 😊

0 likes, 12 replies

12 Replies

  • robin0
    robin0 donopete

    Posted

    how do you manage the pain and work. I take taramodol 8 a day 
    • donopete
      donopete robin0

      Posted

      I'm not able to work, Robin due to the pain and the amount of pain medication that I have to take plus I am now also type 1 diabetic due to the pancreatitis. I take zomorph 120mg twice a day plus oramorph for breakthrough pain and then I have nefopam and pregablin also! Tramadol, although a useful medication, is quite weak for the purpose of pancreatic pain anyway! It is supposed to be stronger than codeine but below morphine. I found codeine better than tramadol personally, although it plays havoc with your digestive system and will cause severe constipation if not taken along with lactulose or Senna. Hope this helps a bit, Robin? 😊
    • robin0
      robin0 donopete

      Posted

      I have been on sick and I am just going through esa dispute. if I don't take tramadol then my bottom falls out and I risk accidents. I had my first attack on boxing day and i was in hospital till early January and my attack was idiopathic acute pancreatitis level 3 going to 4. I had and have no gallstones and I have been told to have my gallbladder out as a precaution and as it could have been? They have failed twice to remove it due to repeat lung infections and now have discovered that the enzymes have attacked my lungs. 

      atos nurse says fit for work. yet esa say reapply and local job centre wont take me on as to ill and have rang them also my gp says I am not able to work. so how can a silly cow say I am. I have filed official complaints with Atos and the Nursing council for the lies and false information she has put down

    • donopete
      donopete robin0

      Posted

      Hi Robin, 

      As you may have heard, you are most certainly not the only one that has had problems with atos. I had been on incapacity benefit for years and when it changed over to esa recently, i was called in for a medical and I was deemed to be capable for work by a nurse also! My money was stopped immediately and I took their decision to a tribunal which took over 18 months to sort out. Thankfully, i won the tribunal but I was still put into the work related group despite my doctor writing to them to say I was not able to work! It appears to be happening to a great deal of us unfortunately. 

      Did you say that the tramadol was effective for your pain? If you still get pain whilst using tramadol, ask your GP for either oramorph, which is liquid morphine or sevradol which is tablet-based morphine. Zomorph is a slow-release type of morphine which I find to be most helpful, as it is in your system when you wake up in the mornings. 

      If you are having problems with your bowels as in loose movements, you may need to be prescribed something called Creon, which is a creatine supplement. It is actually made of pigs pancreas! It helps the body digest food if your pancreas isn't producing enough pancreatic enzymes by itself. You will know if you need them because it will be almost impossible to flush what you have passed and it will be oily and strong smelling. Hope you don't mind me talking so bluntly but it is easier to just get these things talked about I think! 

      Any other info you need, just ask 😊

      Regards, 

      Pete 

    • robin0
      robin0 donopete

      Posted

      Pete 

      I appreciate the opportunity to talk to someone with more knowledge and experience than me. I am a mere apprentice to the disease as are my g.p. lol. 

      I do have days where I want to get a knife and cut the left handside out in the shape of a giant plaster shape (the reason for that shape is torso loads etc. my bad habit as an engineer). 

      I find the lack of knowledge by medical staff about this disease amazing and the lacknof information supplied is poor.  recently contacted the government health minster who raised a debate I .parliament about this. I keep pursuing them on the grounds of financial saving based on the disease and its costs to the health service. 

      I have also been. looking at the idea of collecting people's experience and between us writing a booklet or book to help new and other suffers with learning to live with it.  what are your thoughts on this please

    • jonDsail
      jonDsail donopete

      Posted

      I had Oramorph in NHS Hospital but my new GP put me on MST Continus 30mg when I came out. I'm still on this & Stemetil(Prochlorperazine Maleate) to stop the vomitting & Laxido(to stop the consitpation) &  Questrian Light to stop the severity of itching..  I stopped taking the Laxido for a few days & got bunged up in my back passage, so much so that the stool was long/hard(like concrete) painful to exit & was accompained by bleeding so keep taking the Constipation medicene that the doc prescribes as, with the problem Pancreas, your body won't make enough bile-duct fluid(no matter how much water/fruit drinks you have) juices to emite your stool correctly & without pain/blood.
  • jonDsail
    jonDsail donopete

    Posted

    hi Donopete; I'm due to have op in Mid-January 2015 to have my Tumour taken out from the head of the Ptmentancreas in Birmingham, UK. but don't want to have Chemo Therapy Treatment becuase my former partner damaged my immune system from Oct 2004-Nov. 2006 by putting something in my food.  Ive been fatiguied, tired, drained since & my platelets were identified as 'being too low,' & 'probable damage to' my 'immune system,' in 2008 & 2009.  Despite this, my GP didn't send me to a specialist Haemtologist/Immuneologist despite my making several request(s) & highlighting the conduct, dictatorial, controlling nature of my former female partner. 

    So, I'm concerned about having my immune system further damaged by Chemo T. Treatment!  Did you have Chemo & are you still on it?  &;

    Have you had your Immune System checked?  What was results/findings pls? &;

    Have you had at least three consecutive blood transfusions?  &;

    Did you have hormone/enzyme replacement carried out to your blood, if so how & what was the results?  did you feel much better, afterwards?

    What tablets are you taking for your Chemo?  what are the side-effects pls?

    Thanks, JonD

     

    • jonDsail
      jonDsail

      Posted

      as Micheal Jackson used to sing, 'she out of my life,' but not really cause, over the weekend she has my Eve & between Mon-Fri. my daughter is staying with the mother of her best friend at school... that's how evil the judges/courts have been.  The assistant Manager to the courts was dismissed after I put in a complaint about her 'perverting the course of justice,' after she stopped  a couple from filing their affidavits, in support of me/my daughter!  The PM did nothing in 2011 & more Abuse happened to Eve(7 yrs then) in 2012...  these politicans are all corrupt & protect one another & not the defnseless child!  I still need to take it back to the courts but afraid too, as the same Abuse will happen to me again... 
  • Barbara0309
    Barbara0309 donopete

    Posted

    Hi Pete,

    I have had seven surgery at the beginning of this year due to scar tissue that took over my abdoman. It moved all my organs around. during my surgery the doctor clamed my ureter in three different areas they thought they would have to take my kidney but was able to reconstruct my ureter  and tact my bladder up higher to the wall of my abdomen so my uretet will be long enough to reach my bladder and kidney on the left side. 

    I am now having prombles on left side of abdoman. Hurts from left side back straight through front of abdoman up through my chest. I hurts so bad sometimes after I eat big meals. I have been to hospital after hospital after hospital.  No-one can seem to find a problem.  They have ran CT, x-rays labs, upper and lower GIs, also put dye through my kidney to make sure it was functioning, seem to be no problem there. I feel so helpless. So my question to you is, what are your symptoms with pancretitis. Not sure if this is what I may have but its a start for me. 

    I have lost my job and insurance in the middle of all this and have 3 teenages to care for also going back to school but I just can't stop hurting and feel like doctors think I'm crazy. Maybe I am. Lol. 

    Thanks, 

    Barbara0309

    • jonDsail
      jonDsail Barbara0309

      Posted

      Dear Barbara, your not 'crazy,' & if you're hurting as much as you are then you're only right to highlight this to medical persons & be concerned. 

      What I did is type in my symptoms(whilst I was in hospital), I was experiencing, under google and I ended up at a site which gave me indepth information that this was Cancer related to my Jaundice & thus raised concerns asked the consultant  to carry out the test for this CD Marker, at first he was angry, insisting I was wrong & it was 'gallstones,' but I stuck to my guns, remained calm and insisted that I wanted this test to be carried out 1) based on my symptoms and 2)that the earlier Ultrasound had ruled-out 'gallstones,' I was later proved correct when the dye-fed CT Scan did not find 'gallstones,' and was refered for assessment to the Upper GI team, who concluded that  had a tumour of the Pancreas.  I worked with the 1st team of doctors/junior doctors and kept them happy, for my objective of wanting them to find the complication and this is what you must do, insist they investigate. 

      There are many community groups such as churches that you should join and tell them of your pain and expereinces and they might be able to help & also contact family/friends & convey your predicament to them also.  There are good, kind people out there & in USA, if a person is unable to pay but still need immediate help, they will still treat you and find a solution but above all stay positive for the sake of your 3 teenagers & tell yourself you will find a job but first, you need to get medically better!  My best wishes for you & let us know here how you get on Barbara?  JonD

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