Chronic Pancreatitis took me to hell and back!

Digestive health
1

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.

2

Hi Clarald

I highly recommend the UK Pancreatic Forum

http://www.pancreatitis-forum.org.uk/index.php

3

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

4

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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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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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!

7

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.

8

@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!

9

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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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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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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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.

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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.

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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 

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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

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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 😣😨

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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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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

19

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.... 

20

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