Dr finally agreed that my symptoms sound like chronic pancreatitis!

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So after over a year of suffering in pain, going back and forwards to my GP every week, scans, blood test after blood test, my Dr agrees that my symptoms sound like chronic pancreatitis. She said she doesn't know what to do as my scans are clear.

I've phoned my consultant and I'm in next week to see her again!

To say I'm scared is an understatement! To be repeatedly told it's not your pancreas and it's just IBS! I'm angry!

Recent changes include persistant intigestion (omperazole not working), rapid heart rate 110+ most days, dizziness, shaking, blurry vision, calcium deficiency and very low magnesium levels.

I had always thought it was CP but with no one else agreeing with me i had kind of just thought it was in my head etc. Now I'm a bit shocked!

I have read that small duct problems are more common in females and seem more difficult to diagnose? Does anyone know anymore about this?

And the dreaded question, what is life expectancy like with CP? I've obviously read everything but it differs so much!

Can someone also tell me why they don't just take out your pancreas to stop the suffering? And transplant the islet cells to the liver? Surely this is the way forward?

Thanks for reading and sorry for the rant! Just very down and scared!

Gem sad

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  • Posted

    Hi Gem,

    I am very sorry for your situation.

    I am in similar position as you.Almost the same symptoms.My Gastro Doc. says its just functional disorder as my scans and blood tests are fine. I am confused as some stories of people written here says you dont need to have organic damage to be diagnosed with CP some says it must be prooved by scan or other physical showings.

    Your doctor finally confirmed or is just lost?

    What are next steps?

    I think there is a good chance to slow damaging process to minimum. You must fight!

    Miro

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    • Posted

      Hi Miro,

      Thank you for your reply smile

      My dr is lost and said my symptoms sound like CP but with no evidence on scans or blood she cannot diagnose me with it.

      My consultant isn't great either so I will have to really fight my case. I have done my reading and I know that CP is difficult to diagnose and sometimes changes don't show on scan but the pain can be horrible. I suffer every single day with no relenting! Painkillers don't work so I don't take then anymore. I'm trying turmeric and grape seed tablets at the movement. And i am fully supplementing all vitamins and minerals.

      It's just my new symptoms which I'm finding hard. My heart rate being fast can't be good!? And I'm feeling more fatigued, it can't be my Vit B levels as they were all normal as were my iron and ferrate. My stools are currently orange and have been white and yellow the past couple of months.

      The pain in my epigastric has calmed down a bit but to pain in my upper left shoulder blade is the worst. It always happens almost 5-10 mins after i eat, sometimes it will go after an hour or 2 but sometimes it will stay all day!!

      Sorry ur stuck with similar symptoms! I just wish consultants had more time and didn't want to write everyone off with IBS.

      Gem

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    • Posted

      Hey i m pakistani and 20 years old, i dont drink alcohol and no history of pancreatitis..my weight is 54kg; can u please help me with a suggestion? I am going through a pain in upper middle abdomen radiating towards back at right side and sometimes in the whole abdomen since 15 days and i just can't eat anything either its just little amount of cornflakes, even drinking water also causes burping and bloating and pain worsens after eating.

      I went to Gastroentrologist and he diagnosed it as gastritis and gave me medicines for 5 days i went again after 5 days and he prescribed some tests. My amylase is 291U/L and alkaline phosphatase is 478 and my doctor diagnosed it as pancreatitis and asked me to go for ultrasound but thankGod it was all clear. He asked me to stay without eating for two days and to drink water in sips to allow my pancreas to heal and then gave me antibiotic and painkiller and two medicines to reduce acid reflux. Painkiller just reduces the pain temporarily and no other effect is evident on my health and pain. I still. cannot eat anything and pain has worsened than before.

      Please help. me out...how can i resolve this issue?? Whats the solution? Would i have to bear this pain for months and years? I m unable to do my routine tasks just because of this. And above all tell that does this disease have any specific medication?? Please answer me sorry for the long post but i m tensed.

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    • Posted

      Shaiza,

      It does sound like you are having a bout of accute pancreatitis (don't quote me though).  If it is AP your symptoms should subside in a few weeks.  Best thing to do is stick with a clear or full liquid diet to give the pancreas time to rest and heal.  Enzyme levels should drop and so should your pain.  Going through AP there are a variety of medicines to help you, mostly pain medicines (Percocet, Percoden, Dilaudid, Morphine, OxyContin, Tramadol, etc).  If your current pain meds are not working see if your doctor can try something else.  Keep a log of what you eat to see what foods aggravate your pancreas.  Try some meditation to help get your mind off of it and reduce your stress.   My prayers are with you.

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    • Posted

      Thank u so much william smile

      I went to to my doctor yesterday, he again asked me to give blood test for amylase and LFT... LFT has reduced to normal and amylase is also.less than before but not completely normal. He asked me not to eat anything and rely on just water and juices for 2 days and prescribed injections of Sulzon drug, zantac(rantidine) and painkiller (drotaverine)... he says that i have to give rest to my pancreas as more as i can and should be on full liquid or soft diet even for months. Pray for my recovery..Thanku

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    • Posted

      And one more thing i wanna ask...

      Almost for how much time i would.have to refrain myself from.eating foods i like...even in a small.amount?? Regarding my age and conditions that i dont drink.alcohol and no.gallstones but why is it happening with me :'( whether my amylase is not that much elevated but i dont know from where this pancreatitis has targeted me

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    • Posted

      Hi Shaiza,

      I don't have CP orGastritus although they were queried when I became ill several years ago.have you had an Endoscopy recently.? After years of being diagnosed as IBS and Gastritus I have now been diagnosed with Litchen Planus, and GAVE or watermelon stomach.Dare I ask how your bowels r functioning? If you reduce your intake of food two issues are majorly important dehydration drink lots of water be careful of fruit teas a lot are very acidic peppermint tea is fairly safe.Natural sugars from fruit ie Bananas also provides potassium Coconut oil is ideal as a soother in water (only a little) in cooking as in oil on cereal for energy  and in smoothies.Your energy levels will drop otherwise.Keep off spicy food as I'm sure you already know, certain herbs,peppers even tomatoes can cause acid reflux.All drugs have side effects read not to get paranoid but to learn what is your best helpers in meds diet and activities ie walking .Milk is a food but not everybody can tolerate it.soya milk not the gm variety is helpful for many ailments as is porridge.Honey is a natural sugar yes it equals other sugars for calories but it does heal internal scares and external tissue.Manuka honey is darned expensive but recommended by many if you can afford it.

      I agree with other s here always keep a diary of attacks, pain intensity, duration and meds taken .It will really help yourself and the doctors and specialists to note any patterns.Identify what your doing,what your eating or being stressed when you have an acute attack of pain.This also will help.Taking these steps stops you from feeling helpless ,overpowered and frightened.Good luck, take each day at a time note the good times aswell as the bad before you go to sleep.If your not satisfied with your doc seek second opinion you are within your right to do so.research your subject on medical sights search out the specialists .In England you can ask for referral either on the NHS or private. That depends on finance and severity of pain and how much of your life is dominated by your condition.Take as much control as you can.Dont be afraid to ask. be prepared when you see a specialist take your diaries,your notes and make a list of questions you want to ask.Dont leave till you get a satisfactory answer or a justifiable explain action.keep calm at all times.Always take someone with you a second pair of trusted ears and brain storage is essential. Good luck.I pray for your healing in mind and body.Yvonne

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    • Posted

      Thanks alot... you r so kind and generous :-) i live in Pakistan. My amylase level dropped to 158 but still not normal and pain is not subsiding. Today i had an ultrasound and doctor said that pancreas is not visible in it due to overlying bowel shadows and may be he will suggest me a CT scan. Radiologist said that my gallbladder seems to be little bit distended and filled with sludge (not stones). Yes i will take care of my diet as u said so and will make notes of what i do, eat and what i feel and what makes me feel better. Thank you again.
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    • Posted

      Read with interest ur post... my 19 year old son has just finally been diagnosed with chronic pancreatitis after spending over a year being taken to a&e every 2-3 weeks... this last time i demanded additional tests etc after word pancreatitis was whispered in my ear by a trainee consultant as to her opinion(although her seniors dismissed her suggestion) and surprise surprise bloods showed a high level of amylaze(think thats right spelling) although everything else was normal... drs argued saying he had gall stones(said wasnt pancreatitis as my son does not n never has touched alcohol, is not overweight n does not fit the parameters of a typical pancreatitis patient) i argued back it couldnt be gallstones for over a year n that wasnt it just possible he was a unusual or rare case.. finally a more in depth ultrasound was then ordered n the results ended up being sent to a pancreatic surgeon specialist as drs at our hospital were convinced they must be seeing things wrong... specialist travelled 200 miles to see my son n re ordered scan... within 24 hours he confirmed and ruled my son DOES in fact have chronic pancreatitis... try taking a dose of lansoprazole a day it helps line stomach n seems to help son... also avoid red meat as it contains huge amounts of bacteria... products like pasta, spaghetti, rice and white bread also trigger my sons as do mayonaise and yoghurt..
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    • Posted

      Whats the reason of his pancreatitis?? I am a pakistani muslim.. 20 years old...nd suffering from pancreatitis...doctors call it a mild case as i dont have a killing pain but pain makes me uncomfortable and worsens after eating.. i also dont have gallstones and obviously dont use alcohol too but amylase level was 291 two mnths ago and now it is reduced to 23.. but pain is still.here whether it is better than before....what did the doctors say?? Your son has chronic pancreatitis?? Whats his amylase? And from when he is suffering from pain? Does he have fever and vomits? He must have a low fat diet, and should have plenty of water and fresh fruits and vegetables and should make a healthy routine with daily walk in his schedule. He should not take stress.
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  • Posted

    Hi Gem,

     That's unfortunate what you are going through. You will need a lot of tests to confirm the diagnosis for CP. It's a difficult disease to detect.

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    • Posted

      Hi Greg,

      Thank you for your reply.

      I have had numerous tests, best of them being an MRCP with MRI. I know that my ducts were all normal when I had it done.

      Since I had it done thou my pain has tripled especially the last couple of months.

      Can I ask, do you suffer with CP?

      If so, how was your diagnosed?

      I know I probably need at CT and EUS. Would an ERCP show early changes?

      I've had ultrasound scans, hundreds of blood tests. I've even been to a&e and been told gallbladder disease (I get pain left and right side, but never at the same time).

      I am showing diabetes symptoms but my tests, blood and urine, are normal.

      I really want answers! sad

      Gem

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    • Posted

      Hi Gem

      I have the same situation like yours.

      All my tests coming back normal even my MRCP but I have pain in both sides that rediates to my back and shoulders. Sometimes I feel burning and itching and I even feel vibration in both sides. I went to 3 diffrent GI doctors but none of them belive that I might have CP.

      I have a question. Can chronic pancretites pain comes and go?

      How does your pain feel like?

      I tell them about my reserch online that chronic pancretites is not easy to be diagnosed they say nope you don't have it. Then I ask them what is pain that I have they say we don't know.

      I am confused .

      By the way, I had my galblader removed 3 years ago. The Surgon performed cholongiogram on me too. My surgery was a difficult one since my galblader was inflamed and infected. So I don't know if he left any scars there. But all my scans MRCP and ulthrosounds are normal. But I have pain. I can't sleep on my left side beacuse it gets so painfull.

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    • Posted

      Hi Cathy,

      Sorry you are suffering too sad

      I don't know if CP pain can come and go but I guess if the inflammation is mild and your diet is healthy then the pain could stay at bay. I know that CP pain gets worse as time goes on and also lasts longer to continuous.

      I'm having another ultrasound today to check everything. I've also had my dates through for my HIDA scan and EUS.

      Have you been tested for bile salt malabsorption? Also have you heard of sphincter of oddi dysfunction? Or been tested for it? That happens after gallbladder removal sometimes.

      Have you had an faecal elastase test done? What are your bloods like?

      Gem x

      I'll keep this link updated with my results.

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    • Posted

      Hi Gem

      Tnx for replay. All of my tests are normal. I've went to 3 diffrent GI doctors and none of them could gues what was wrong with me. And no none of them checked for salt test or other tests that you mentioned. By the way, I have burning feeling in my colon and whenever I have a bowl movment I feel the pain, pressure and burning. Now I'm thinking that it might be my colon. But I don't know if the CP pain is like this.

      The only test that I didn't do is endoscopy and colonoscopy beacuse I'm little afraid of its prosidgures.

      And you know what there is something else that keep me worrying is that the Surgon during the surgery dropped some of my gallbladder's stone and he said that he believed that he got them all but I'm thinking what if there are some left there in my stomach and moving around. What if they are the source of the pain? But then the MRCP and Ulthrosounds showed nothing.

      Then I think about Cholongiogram that he used as well. What if he damaged something beacuse of it.

      You see I'm getting crazy.

      And you know what I have constipation but I don't see any blood or anything else to do colonoscopy.

      I don't know what to do.

      And Gem tell me can you eat everything? If not what food bothers you?

      Tnx xox

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