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Chronic Pancreatitis took me to hell and back!

Posted , 34 users are following.

clarald
clarald

Hi, I believe my history of this condition started in 1977 at the age of 24, I began to get discomfort in my abdomen which my GP could not explain and would do anything about, it was not a major problem to me at that time I just new something was not right.

About 10 years later things got a lot worse the pain increased and was more frequent.

In 1989 I had been in a great deal of pain for over a year I didn’t want to eat because I couldn’t keep it down and it increased the pain, my GP had become obsessed with the idea that my problem was irritable bowel or it was all in my head, even to the point of sending letters to that effect to the hospital, which I believe obstructed their investigations on me.

I had had many tests over the years at the hospital but none had indicated what the problem might be.

I even paid to see a consultant privately (£100 per hr) but that turned out to be a lot of empty promises and I finished up none the wiser.

My breakthrough came when things got so bad I was having to take over 20 paracetamol a day (because my GP refused to give me anything stronger) trying to reduce the excruciating pain, I got to see a different GP in my surgery as mine was away, he was so concerned at my weight loss (now only 90lbs a loss of over 40lbs) and how I looked, he got me into hospital the next day.

My stay in hospital lasted 2 weeks they carried out extensive tests and discoved that I had chonic pancreatitis, cause unknown.

It took about 3 years on Nutrazim pancreatic enzyme (I am now on Creon 40000) before I could honestly say I was back to some sort of normality, my weight increased and I was able to live again. Since then I have had quite a few what I call “flare-ups” of pancreas pain but fortunately I now have Oramorph morphine solution to be able to cope with it, other than that I have been doing well, “oh!” apart from my Thyroid packing up!, it’s a good job we humans don’t have to have an MOT, I`d fail!

During 2006 I became Diabetic, this has caused me a few more problems but I am slowly learning to deal with this as well.

It is my experience that when you have this conditon that you feel very much alone, it seems that a GP`s knowledge of the condition is very limited and you feel as though you`r having to deal with everthing on your own. In twenty years I have not met anyone else or been able to speek to anyone that has it, so support is very thin on the ground.

Having told my story, I must add that although there were times when I was in severe pain and not being given any help or answers I did not want to live, the opposite applies now, so don’t ever give up.

5 likes, 39 replies

39 Replies

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  • basten
    basten clarald

    Posted

    Hello I am so glad I read everything here. I have ad burning pain, going "drowsy" when eating for months.  I had so many scans and tests blood etc and ws told just my hrrnnia but ttold my gastro man the antacids made no difference.  They discovered I had severe colonic transit bowel time,..probably I know know due to fatty stools not moving. I had a colonoscopy. Then my gallbladder out. Yet still pain.  On Boxing day I had such pain all xmas night in my back (left mostly) I was taken to A & E and they said I had to have an operation as I had pancreatis. Before this the paramedics had given me cocodomal and ibruprofen which then gave me stomach pain and I could not pass urine and ended up on a caheter.  i eventually 3 days later was given an MRi.  Then next day did not even see a consultant but told by an ordinary nirs I could go home.  I had been on a drip, drinking loads, catheter in and ate everything despite pain.  NOT ONE person ttold me no caffeine, no fat ir hospital sponge puddings and custard.  I had for months been in pain and losing weight by now.  When they took my catheter out the horrendous burning and blood on passing urine, then horrendous pain all up my back.  I have since then lived in awful pain and indeed when I was in hospial I took an overdose of my tranquillisers.  I had had enough.  I am female 66 and my poor kids were at their wits end. Then, because of past depression for years and such my sugery GPs yet again referred me to mental health division.  And all because blood tests re amalayse had settled down and one GP even said you can eat a biscuit!!  I constantly cry and my sugars only drop to about 4.3 when I use energy but I feel rotten but I am told I am not diabetic.  My children see me crying in such pain, even when I passed a bowel motion the pain spreads all through my back.  I  have now written to the customer care team complaining to my hospital that I should be in hospital and finding out what is going on and being observed.  I am still slowly losing weight. My thighs and arms are completely shrivelled.  I was sent to a dietician and at last someone also acknowledged my eeight loss and gave me MILK Fresubin to take 2 times a day.  I had to take laxatives sometimes a yellow fatty stool but now just huge very  brown and still "geeeasy" soft.  But I am now under another GP who acknowledged weight loss and the fact I had pancreatis.  She tried me on Questran to no avail.  Now the yesterday she has given me some Creon I tablet with each meal.  She she was completely baffled with my symptoms, in that I go "drowsy" on eating, then start to wake up as my bladder fills up but then afyer peeing the pain spreads everywhere.  Its even worse if I have had a bowel motion (fluid) and always so bad last meal and last pee!! I go to bed crying with what feels like I am being stripped of water, blood volume or somethinng.  Then I am up peeing all night and so lethargic.  Anyway, I have also been for a hormone blood test for aldesterone today but like all my blood tests, all saying OK, it will probably be fine.  I DO SO WISH IT WS THIIS.  I have had blood in urine months but nothing else.  How I am living and functioning God alone knows.  I have never known such pain daily on eating, peeing and bowel all through back.  I pray now for me to pass out somewhere.  I have written to the NHS ombudsman in desperation.  I said to my new GP it feels as though I am slowly dehydrating.  I have told her everything and admit she is the first to try something but has not referred me to any consultants.  My son ws

    as with me and said, like my daugher, my mum cannot go on like this. I cannot hardly walk out with my dog without pain.  ONEGP even said I have seen you walking your dog..yes I said in pain.  So far I have taken two CREON and feel no better. Am I supposed to take CREON in the day when I have a piece of fruit separate?  I have been told I had dumping syndrome...probably where I had an adhesion removed from my stomach to my small intestine when my gallbladder was removed it was discovered.  I have never experienced such 24 7 pain.  I have a hernia too.  But to have nothing showing blood wise and no gallstones via the MRI or anything I suppose sinistr or I would have been kept in.  WHEN I had pancreatis I did not vomit.  But one day for pain a GP gave me oral morphine. I ook one spoonful and half hour later I was doubled up in pain in my stomach unable to walk for over an hour.  I phoned emergency GP who said it shouldnt do that...lay still and take some peppermint!! It ended up with me in A & E unable to pass urine again.  On reading the oral morphine leaflet it has alcohol in.  It can also resrict the urethers or billary tubes!! Anyway I feel I am going mad. I do not wish diabetis on anyone but have even thought I wish my AC1 test would have said I am diebetic or sugar would be in my urine.  Thankyou for anyone reading this.  Thankyou to everyone on this pancreatic site.  Who knows someone may have similar to me.  Bless you all.

  • elizabeth_76861
    elizabeth_76861 clarald

    Posted

    I met my husband 3 years ago, he was a man in a lot of pain, in a house by himself suffering. I choose to be with him and find an answer to his chronic pain ( mind you he was suffering way before I met him). After crying and fighting with doctors telling them he is not a drug Seeker, but a person in pain we finally got a diagnosis.... chronic pancreatitis! Please dont think that with a diagnosis everything got better cause it didn't. We struggle every day with this and the sad part is there is no cure for this diagnosis. The reason for my post is not to tell you how awful and life changing this is... for family and person going through this horrible chronic illness, but to tell you the steps i have taken to TRY and find my husband some relief and a little better quality of life with his kids and self.

    1. Pain medications he has been on all types and strength still he has chronic pain

    2. celiac plexus block it worked for a while, but lately he has had no relief in pain actually we are in the hospital every day.

    3. Depending on the severity/scarring of the pancreas they will have other procedures available (whipple procedure) read on it and discuss with your doctor if its for you. He cant have this since the scarring is all over his pancreas.

    4. Im in the process of seeing another pain specialist to try and discuss a pain pump. (I pray this is the answer for us)

    5. Another option is to go to a specialty hospital in Gainesville and see what other options they have for him.

    6. If it all fails he was referred to a special surgeon in Alabama to remove his pancreas completely (rember that option is last resort with lots of unknown risk) please do your research before taking that step and make sure its a doctor that has done that type of procedure before. Like his doctor told me ONLY HE CAN DECIDE TO TOTALLY REMOVE HIS PANCREAS... its his choice what quality of life he wants.

    Remember this will never be cured, but you can fight to have a better quality of life. Hope this is helpful to someone else, trust and believe i know what you all are going through as we speak im in the hospital with my husband dealing with this evil illness. Please lets all bring awareness to this illness and talk to doctors about properly diagnosing people early on in its phase it will make a world of difference.

  • Lovemenow43
    Lovemenow43 clarald

    Posted

    Hi! I'm having a flare up now! I'm crying it hurts they said I had acute idiopathic pancritius and gastritis a year ago since then I have had some flare ups it soooooooo painful my back my arm shooting pain I can't sleep I can't lay down it sucks but I HATE going back to the hospital besides the deladid they give me that works amazing other then that I'm there for weeks at a time sad I'm trying to make it go away on my own or hope sad I'm taking norcos for pain on my own the worse pain ever!! I feel alone to they don't know what cause it I prob have chronic pancrioutits idk it just hurts sooooo bad rolleyes 

    • basten
      basten Lovemenow43

      Posted

      Oh my goodness if i have this everyday it is hell and back i agree and so alone yes yes.oh boy but everything i eat burns right through.screaming last night. fruit grains tiny tiny biscuit coffee i too gastritis.fatty stools but severe constipation hernia but bowel movement and burns even more right uo.burns in bowels.having right now 24 hr tube to measure pain acid.now td alchasia.my whole digestive system burns it is hell.i 67 and look like 97. Put it down to alcohol stopped 19 years ago smoking but worse very bad crap bi ge food over years bad diet cos addictive nature.also loads of acid meds was on and became prediabetic.then worst of all over year with awful pain gallstones.that out and worse since. I sob and sob.gets sooo bad as day goes by no matter what.worse too if use energy. Palpitations sweats tight band round chest.waiting fir ct scan 2 weeks time and am scared.after 2 years it i feel wont be good news. I just kbiw its lancreas tried creon burns guts cos gastritis all meds burn even kaxatives.very suicidal as have kept fighting for justice as told in mind. I reckon they mucked up gallbkadder op. Oh what are your narcos,? I cant take anyrhing for pain cos gut pain trying even morphine then cant pee and have catheters.my whole digestive system up creek. Just want answers or bowel out or pancreas.3rd gi good and he will do ercp and i know risk but it cant get any worse. I am un such pain now and boweks wont hardly work despite kaxatives. I hope you got better tell me what yuo eat . I rarely sleep as swollen abdo cant pee standing have to lue flat get bladder to fill and uo all nught. been discharved so many times family at breaking loint.thank God for this site. X
    • Unbearable
      Unbearable basten

      Posted

      Hi, as suggested to me by another sufferer, try Gastric Enzymes - available at the Pharmacy or a Health Store without prescription.

      I have suffered for 7 years, and after only 4 days of taking these, I have not had any pain.... (touch wood).

      It may not work for everybody, but it crtainly couldn't hurt to try!

      Good luck - I feel your pain and anguish.... 

    • basten
      basten Unbearable

      Posted

      Hello thankyou you are US?? I will look up gastric enzymes here. do you know where I would get in UK same as yours and can you tell me what is in them please.  Anything is worth a try I agree........pain is horrendous everytime everything I eat now....x
    • basten
      basten Lovemenow43

      Posted

      I did ask you what are norcos you are taking please. My pain starts as soon as I get out of bed, worse as day progresses no matter what I eat. Crying most nights and days.  Waiting for scan 18 October and stuff. Had enough.  Burns through whole guts body legs arms.
    • Unbearable
      Unbearable basten

      Posted

      Hi, no, I am actually in South Africa. Gastric Enzymes provide you with all the natural 'chemicals' for want of a better word, that your Pancreas is lacking in order to function properly.

      As I say, it may not be the answer for everyone, but worth a try!

      There are various manufacturers, but your Pharmacy / Health Store will know what you are asking for.

      Good luck & God Bless :-)

    • basten
      basten Unbearable

      Posted

      Hi oh crickey South Africa. I thought only the western society suffered badly i.e. US UK etc.  Tried asking chemist pharmacy never heard of such things. You can get Creon digestive enzymes I tried from GP but they burnt my stomach too as all food does even fruit, chicken, cereal, juice.  You can get them on Amazon etc.  Thank you I am glad they help you.  I have been told I hace alchasia too all sorts. Hope to get sorted soon but only cos I have kept on and on for over a year since gallstone op etc.  God bless you too rolleyesbiggrin

    • Unbearable
      Unbearable basten

      Posted

      Hi, I am so sorry you can't seem to find Gastric Enzymes - the person who recommended this to me was from the USA, so I figured if I could obtain it so easily in SA, then you shouldn't have a problem.... I just went to my local pharmacy, and they know exactly what I needed. 

      I wish you everything of the best, and really hope that you find your own solution.  Warm wishes biggrin

    • alex21614
      alex21614 basten

      Posted

      Hi Basten,

      Your the first person to describe their pain and symptoms like mine. My scans are also clear and docs are telling me its viceral hyperalgesia which I know It cant only be this because food is the culprit and fat makes me crawll up in a ball wishing I was dead.

      I am a 26 year old with chronic pancreatitis for 2 years. I have come to understand from reading many boards that most people with chronic pancreatitis experience intermittent severe pain from eating that either last days weeks or months and no mater how long these attacks occur they subside at some point during the day.

      I have come to believe that im a rarer case because my pain is severe and 24/7 and of coarse worst with food. I have no nausea and constipation rather than diareah. I also have gastropareisis that comes with it. Food stay up to my throat when i eat as if it was stagnating in my stomach. The pain I experience is in my back and upper front chest (more on left side but also mid and right) oddly I also have severe pain in my lower abdomen and lower back as if my intestines and kidneys were litterly being eaten alive. And truly my whole body hurts but it stems from my pancreas. The pain is worst with exercise. Coffee or caffeine hurts like hell (although I know many do not have this problem). And digestive enzymes like creon and viokase increase my pain but help me digest (double edge sword for me! ). I tried Ibuprofen and it hurt my gut and I bleed. The pain wakes me up from my sleep as if it was swelling during the night and also prevents me to fall asleep. If I dont sleep I wake up in hell of pain and its harder for me to sleep the next day.

      My pain and pressure in my abdomen seems to increase day by day meal after meal as if my disease constant but was degenerative. Its odd beacause most people experience attacks but they subside at some point but not me! sad. 

      Please let me know how your doing. Im am sorry you also have to go through this. And I hope you found some help or some kind of releif. 

      Maby we could help each other out since your the only person I found that experiences their symptoms like mine

       

  • basten
    basten clarald

    Posted

    Oh oh i cant believe the rekief ive found on here.its horrendous.but my bowels slow so constioated but fatty.burns through while body.pancreatis xnas ideooathic.never told what to eat by any go dietician all research me but even banana fruit burns and soo bad by pm go to bed sobbing.i cant take morphine.paracetomols do nithing.gastritis and creon burns guts.very down 😣😨

  • nades
    nades clarald

    Posted

    Hi Carald sorry you have developed chronic pancreatitis through no fault of your own.I myself have the same condition went into hospital August 30th with pneumonia secondry to Chronic pancreatitis but I am afraid bought this about by drinking alcohol throughout my life ,so have no sympathy for myself.It does cause dreadfull pain and I myself have been put on CREON 25000 but have problems taking it as I eat once a day and have major sweet tooth going on.Not happy with getting fat as I lost two stone now 73kg.Am on morphine sulphate 30mg morning and night plus oramorph liquid the pain is so debilitating but you don't deseve this out upon you I do .Want you to know here if you need to talk about any thing.Take care your not alone????

  • hannah1958
    hannah1958 clarald

    Posted

    Loved your post after suffering severe cp for years they at last got to the bottom of the cause after removing my gallbladder because of stonesthey didnt check to see if any had escaped into my bile duct thus entering my pancreas and causing irreparable damage where they remain for the rest of my life as they say they have embedded into it I very rarelyhaveagood day and by that I mean im able to get out of bed but I try to hide the pain alot from my family I have just been prescribed creon but I am scared as I have read so many conflicting stories does anyone believeit will help
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