Chronic Pancreatitis took me to hell and back!

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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.

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  • Posted

    couldnt believe my eyes when i read your post, would think i wrote it! will find out tomorrow if i have got c.p but by reading your post i think i no the ans. will be just relieved to get a diagnosis at last. thank-you
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  • Posted

    Hello

    I also read your post and couldn’t believe that somebody else is experiencing what I am experiencing!! I am 19 and my doctor thinks that I have Pancreatitis. I have always thought that I just had a “funny tummy” and just generally have not felt well for years. I just thought I was a hypochondriac and when my GP said 6 years ago that I had IBS it seemed to make sense, my nerves were giving me tummy ache!! I had several bad flare ups but they usually went after a few weeks or so until earlier this year when I was experiencing severe abdominal pain. Again my GP thought it was an IBS flare up. Some foods really gave me an upset stomach and at times I couldn’t go longer than an hour after a meal before I had a severe upset stomach causing me to run to the toilet. This affected my social life and work and I stopped going out and I fell into a “dark mood”. Although my life was good except my stomach ache and I had everything else going for me I just couldn’t stop the bad thoughts. When it was so bad I just felt like I couldn’t go on anymore!! Drastic I know!! I kept visiting my GP and as I got upset when telling them they just said that the IBS flare up would pass and I in the meantime to take antidepressants. This is something that I did not want to do as I am only 19 and don’t want to depend on them for the rest of my life!! The doctor however convinced me so I tried 3 different sorts all giving me terrible side effects and making me even more depressed. After experiencing blood in my stools I saw another Doctor. He referred me to a specialist, a private one. I have paid privately for all sorts of test which has cost a ridiculous amount of money. From my MRI scan it is clear to see that my bile duct is an abnormal size, the average size being approx 3mm and mine being 10mm. They cannot see why it is like this as I have never had a bad bump or drank much alcohol as it upsets my stomach and gives me the most horrendous abdominal pain and bloating. I just want to be a normal 19 year old and feel well and enjoy alcohol. On 17th July I visited another private consultant. He is a pancreas expert. He is upping my dosage of Creon and also putting me on an acid reducing tablet. I also take spasmonal to help the abdominal pain. My original GP has messed me around so much and made my suffering go on for longer I will no longer visit her again as she is a disgrace!! She thought that Creon 10000 were strong and to only take one!! (my new consultant couldn’t believe that a GP would think this and informed me I could take up to 6 and they would still not hurt me!)I have been on these for a month and they seem to slightly help, hopefully the new stronger ones will continue to help me.

    Even though I think we are finally getting to the bottom of my problem I can’t help think that this is my life now and I will always feel unwell. Sometimes it’s hard to think positive. Its nice to see that somebody else knows what I’m going through which doesn’t make me feel so alone.

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    • Posted

      Hi, this is a long shot as you're post is 9 years old, but did you get to the bottom of your problem? Do you have cp? I too am 19 and really worried, please reply if you see this, thanks.

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    • Posted

      I know I'm not the one you've written to, but I feel my history with this disease may be of some use.  No, I am not 19, but I was diagnosed with chronic pancreatitis in 1994 and have had to live with it for over 20 years.  Please see your doctor right away if you think this is what you have.  This can be controlled by a low fat diet - an extremely low fat diet.  There will be much you cannot/will not be able to eat, but we are in a day and age where there a many, numerous foods made with low-to-no fat.  When I was diagnosed with this, this practice was only beginning.  I won't bog you down with my full story, but please, see your doctor immediately.  And I hope you have/find a good one that won't put you through absolute misery before finding out.  You are just 19, but this does not mean life is "over" so-to-speak.  You will definitely have to stay away from alcohol, though.  Way too dangers and way too painful.  Not worth it.  Good luck and if you can, please let me know how it goes.

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  • Posted

    My experience was identical to yours it took 2 yrs for me to get the local GI, outta my butt and back to the real cause...my pancreas. I had a year of hell throwing up all the time etc...you know, and when the problem became overwhelmingly obvious, I was labelled CP. So far not diabetic yet, but they are checking me regularly as they expect I will become diabetic. Now the problem I have is daily pain, with a doctor who will not prescribe any strong pain meds period. So ya suffer in silence or risk being labelled a drug seeker!!! Lots of stereotyping. Glad to here you doing better, but my experience happened very similar to yours. Way back I had complained to no avail to doc's, but atleast now we know. Good luck to you.
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  • Posted

    Hi all. My dad has chronic pancreatitis and the doctors have said there is nothing else they can do to help, even surgically. He has been on morphine for 2 years now and the pain is still extremely severe. I want him to speak to people who have the same problem so that he doesnt feel alone. We do not know what else to do but he cannot live this way. Are any of you better since you posted this as i see it has been quite a long time ago. What are your statuses now? What do you do to cope with CP? Please help me. Thanks so much!
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  • Posted

    Hi Jess

    Get your dad to log onto www.pancreatitis-forum.org.uk where he can contact people in the same position as he is. Although we are not medical professionals we might be able to help him by pointing him in the right direction with advice and offering understanding.

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  • Posted

    @Jess

    There is a group called PAI that is on the web, it has slowed down a little since facebook groups started but it is still full of helpful people who all have chronic pancreatitis of one sort or another and they are provide excellent help/resources. In the beginning it is tough, especially without a firm diagnosis, but once you get a diagnosis it gets a little better usually because you get decent pain medication. Sounds like your father has pain meds. I personally take morphine long acting, and dilaudid for break through pain. It has helped my quality of life quite a bit and I'd hate to not have them now. This started for me 7 years ago and it cost me my job, and there were no benefits available to me. However, I have a very loving and luckily supportive spouse (who is also a registered practising nurse). I don't where I'd be without her, but the fact is I found the groups because I too needed help and there are certainly groups out there and on facebook. Personally I found PAI to be my favourite, as facebook topics get over run. Good luck and keep smiling, people can still live a lengthy, happy life!

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  • Posted

    Your story sounds like mine.  I have been told I am crazy and this is all in my head. All my tests have been "normal" yet I continue to have relentless left sided pain and oily stools.  I can not eat sugar, fat or caffine and many other foods without becoming terribly ill. I am affraid that I too am becoming diabetic.  Do you use insulin?  Does pancreatitis cause you to become a Type I diabetic or Type II?
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    • Posted

      I've had a constant pain under my left rib now for 4 months and troublesome bowels. My stomach is constantly bloated and I feel like I need a pin to pop me to let the air out. I don't feel like eating because everything upsets my stomach. My GP thinks it's ibs but I'm now thinking it could be CP. Made an app to discuss with him later today.
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    • Posted

      Are u still around. me too caffeine fat sugar even fruit is hell.what did happen to you.what do you eat.cereal bread grains dates fruit milk cheese even low fat horrendous.
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    • Posted

      Same here for the coffee and fat. I am insomniac from the pain and that two increases my pain. It's like if my pancreas swells in the middle of the night. I'm the only one I've heard say this. I feel very alone

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    • Posted

      you're born with type 1 you develop type 2. I read recently they're thinking diabetes caused by pancreatitis to be type 3b though. I'm 40 and have had pancreatitis since I was 8, @ 22 became chronic. it sucks to deal with but deal with it you must. I can't eat fattening things without stomach upset and I feel bad most days.

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  • Posted

    ive just read your story and although mine starts only within the last 2 or 3 years i could well be reading from my own experiences,i was diagnosed with prostate cancer back in 2009 which thankfully has been sorted out and cleared up,my problems began later as a result im told of the cancers after affects with b12 deficiency and pernicious anaemia that has lead to gastric problems especially panreatic enzyme insufficiency,this was diagnosed after months and months of investigations by my very arrogant and rude gastroentorologist whom if i am totally honest gave me the impression i was imagining my symptoms,even my own g.p didnt have any idea as what to do,i have been told if my pancreas is removed it will lead to diabetes,i have myself lost lots of weight suffering malabsorption,this year alone ive been down to hospital 4 times with terrible abdomen pain only to be sent home and an increase in pain relief,the a & e staff not really knowing what to do,the thing i find worse though is that my gastro consultant has not sat with me at all and discussed anything at all with me regarding my condition or what amounts of creon i should be taking,my diagnosis was sent to me by letter and a pre-scription for creon 10,000 which was not enough(my dietician told me this)told to take 1 with each meal and break 1 in half with snacks(this cannot be done as told to me by my local pharmacist)now bear in mind this is coming from a gastroenterologist who obviously isnt doing something right,after 3 requests for him to see me regarding my regular abdo pain that i know is due to pancreas problems he has chosen to ignore my g.p,dietician and surgical consultant i saw only recently down at my local a & e dept due to the pain i cant seem to get rid of except by taking pain relief i.e morphine,tramadol etc,just what do we have to do to make consultants actually sit up and take notice and convince them somethings not right and that we are not imaginin this constant pain,i myself became suicidal and had to have my local mental health team involved as life became so unbearable,i can sympathise with the feeling of loneliness as thats how ive been made to feel due to lack of understanding especially by my gastro consultant,im hoping by reading your story that somewhere along the line somebody somewhere may hold the key to improving my quality of life and me getting back to actually starting to enjoy life again,its not happening as of yet,but reading your story gives me hope that things can improve eventually.
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    • Posted

      Oh my my this is ME.i agree treated like idiot.rude consuktants.ive had second opinions now on 3rd seems good gi agreed to do ct scan despite pancreatitis xmas mri showed looked ok. He said that means nithibg...not till we look down inside his exoertise.my bowells hardly work gastritis akchasia dumping syndrome . Me too suicidal but laxatives drugs burn guts.creon burnt. cant take nsaids oral morph horrendous stomach pain then cant pee and catheters. Im at my end i feel 67.look 97.also had autoimmune djsease blood low platelets body attacking self so steroids but still pain. I sob by evening bed.my cat knows and cries too and wint leave me.if only he could talk. been told all in mind ibs.stonach swells sooo bad and abdo burns too. Worse between shoulders and waiting ct scan and pray new gi will help.took my xase to ombudsman 8 months ago as my lical hospital not i terested discharged cos bloods ok all tests 2915 all bad since gallstones 2o14 to april 2015 then removed and hell ever since.this illness has made me insane been referred to mental health team as begged for support whilst suicidal going througg undescribabke hell each day.but i still eat crap so doing more damage as sooo depressed not knowing what causing what.and crave fat carbs despite fatty stools i kniw i am not helping.tried veg for vreakfast. Salad just cant help self addictive to sugar all life and retured alcoholic none 19 years. I drink odd coffee tea and 3 lites water.when i do poop laid up in bed as pain travels from lowe back all up to back chest worse if just eaten.lising weight again since steroids stooped.never sleep as peeing all night.got worse since pancreatis xmas yet nurses hospital dietician gp gi noone ever said what not to eat or advise soo abandoned and alone and grown kids near breaking point watching ne.getting weak too worse using energy
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    • Posted

      Hey basten,

      Im 21 years old and got acute pncreatitis about 3 months ago. Since I have developed a cyst on my pancreas as well as some scar tissue. Im in my senior year of college and am battling depression as well, pain everyday and lost most of my friends. Find it hard to feel normal at all and as i hate to admit, i think of suicide everyday. I wish i could go back in time where my days werent consumed of

      reading threads of pancreatitis, battling

      painand depression, and were more about!

      chasing girls.

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    • Posted

      Hello Basten. Yes its a horrible condition in itself and it sounds like you've got a whole lot more to deal with as well. I'm so sorry to hear that and sending you my love and support. I've had CP for 6 months now and its been tough but not nearly as tough as you've had it. Generally speaking sugar isn't too bad for you with this condition so you should be fairly OK with eating gelatin sweets so long as they don't have fat. I find sugary fizzy drinks actually work quite well when I get flare ups. However its the fat and alcohol that should really be avoided if you can. And you should try and keep your protein levels up when things aren't too bad. Boneless, skinless chicken breasts and canned tuna works for me. Skim milk is OK too. When you get a bad flare up I find its best to just drink water, fizzy drinks and fruit juices for as long as you can cope with it. Lie with your legs up to your chest to get some pain relief. Try a hot water bottle on your left rib cage. If you have acid problems apple juice is much better than orange. You're doing the right thing drinking lots of fluids cos dehydration can really cause problems with "sludge" building up. I'm sorry to hear that Creon is burning your insides - I found the stuff really helped me. I was in hospital 5 times in agony all the time before they decided it might be a good idea. Maybe you have some other problems like IBS as well you need to get checked out. I'm on vitamins, high doses (200 - 400mg) of tramadol daily, paracetamol and omeprazole. I don't drink alcohol any more (drinking too much was the main cause of it for me and I figure at 35 I've probably done a lifetime's worth of that). The depression and insomnia sounds pretty awful. Maybe some diazepam? I read somewhere it can actually help with pancreatitis as well but doctors don't like to prescribe it because its addictive. Anyway of course this is just my advice and it might be useless for you but just want to let you know you aren't alone and there are always people to offer support. Hope things get better for you soon.

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