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 
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
Hi Miro,
Thank you for your reply 
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
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.
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!
Gem
ERCPs are dangerous and are no longer performed for diagnostic purposes, only for therapeutic procedures, ie; stents, duct dilation, etc. The most sensistive test for diagnosing CP is an EUS (Endoscopic Ultrasound) using the Rosemont Criteria looking for duct, and gland abnormalities. ePFT (Endoscopic Pancreatic Function Test) is also used together with EUS to diagnose. ALL, other tests ONLY show moderate to advanced CP. They usually are normal in the early stages. CP is not a death sentence. There is medication, therapy and surgery to treat it but there's no cure. It's a progressive disease.
Thank you Greg, I've found that all most helpful!
Where are you located and what kind of care do you have access to? General Internist, even Gastroenterologists DO NOT specialize in CP. You have to go to a pancreas specialist.
I'm in the UK, near Coventry. So I'm under Coventry university hospital. I'm just under a gastro, I can't seem to find any pancreas specialists. Do they do them on the NHS or am I gonna have to go privately? The only pancreas speciality I could find was for cancer.
Do you know if removal of the pancreas and islet transplant would solve my issues? If it does turn out to be CP?
You need to request an EUS IF your doctor suspects CP. TPIAT is only reserved for cases in advanced disease and when ALL other attempts to treat have failed.
Ok, thank you so much for all the information
Gem,
I can understand your frustration with doctors, we have all been there. You can have a long, productive and quality of life with CP, but to do you must do what you can. First, restrict your diet and avoid fatty foods as much as possible along with others foods that may aggravate your pancreas. Enzyme supplements may be needed to help with food digestion, which is very common. Keep a log of what you eat and how your pancreas responds. Second, find those activities in your life that lower your stress. Thinking about the CP all the time will do no good, which I know is difficult to do. Third, when you do have pain do what you can to alleviate it. Some discomfort may be reality, but when it does get bad try different pain meds. Try and stay away from the opiates as much as you can and only use them in dire times. My prayers are with you as I have my 3 year anniversary with CP.
Gem,
One thing for pain you may want to look at is a Spinal Cord Stimulator (SCS). It implanted in the body and tells you brain to feel a tingling sensation as opposed to pain. Boston Scientific has a good website that explains the SCS in more detail. I've had mine for about 1 1/2 years.
Hi William,
Thank you for taking the time to reply. Sorry you are having to suffer with CP. I will take your advise on board. I am currently on a low fat diet. I will be making a note from now on about what foods aggravate my pains. And I will look into SCS in more details. Thank you for your helpful words!
Gem
If your scans are clear, are you having correct scans .I was having Ultrasound Scans for ages, nothing showing then had MRI scan and scarring of pancreas was there to see.
If your scans are clear how is CP confirmed? Mine are also clear, but I'm much the same as you Gem, I beleive I have it but the docs say I haven't....
Hi woodywhite,
Tank you for your reply.
I've had ultrasounds, MRI and MRCP. Due to my age they are refusing a CT at the moment. I have read that CP can be very difficult to diagnose and you can have pains and other symptoms (which I have) but normal scans. Even the surgeon I saw told me structural changes would be microscopic and not visual on scans. The problem I'm having is that I'm in constant pain, I have loose stool, weight loss, dizzy spells, intigestion, rapid pulse, pain around my belly button, left kidney pain, pain under my left & right rib, pain the radiates into my left shoulder, pain in my right shoulder (less often), trembling all through my body, heart palpitations, severe pain after eating under my left ribs, fatigue, confusion, brain fog and bad epigastric pain.
I've had this since April of last year, it got worse in October of last year and 2 months ago it took another downward slide and got worse again.
I just don't seem to be able to get a grip on it
Gem
Hi Jon,
Some people are diagnosed on pain symptoms alone but other people are only diagnosed when scans show changes.
I'm hoping from the suggestions from William and Greg above to get a EUS and see where I go from there. I've had lots of bloods and stool tests done. The only stool test I have had done is the fat test. I might ask for that too.
Can I ask what ur symptoms are? What tests have you had?
Gem
Echo-Endoscopy, MRI
I have massive brain fog, I cant wake up in the morning
Headaches
Neck pain
Weak, pain in legs
Sore joints
Back pain
Abdominal pain
Groin pain
Exhaustion
Oily stool.
This all started in June last year and I'm getting worse...
Through endoscopy at the 1st hospital I was told my panc didn't look right, but no signs of any damage. I went for a 2nd opinion at a different hospital who said there is nothing wrong with my pancrease. I'm waiting for stool test restuls. I'm desperate and lost....
Hang in there Gem.
Thanks Jon,
I know how you feel! I'll let you know how I get on next week! Good luck for the stool results!
Hang in there too
Gem