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Could this be chronic pancreatitis?

Digestive Health | Last Active: 5 days ago | Replies (55)

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@kiwigirl63

Hi, I'm new here and from New Zealand.
I have Chronic Pancreatitis and have had it, about 15 years now, I was diagnosed in Australia, and I have had many, many Acute Pancreatitis episodes, which I don't wish on anyone, they are hell
My bloods, amalyse/lipase were at the highest ever at 3,200,after been medically induced by an ERCP, so no more of those in Australia.
A year or so ago, I got AP again, vomiting copious amounts of skinny,green bile,so sick,and couldn't stop vomiting and the pain in my stomach, crippling.
So in those episodes in Australia I would go to hospital, placed on a drip, and given a PCA for pain relief, and rest of the pancreas, that is all they can do.
Then I came home to New Zealand and because I needed pain meds, only one lot, as went off a lot, I was told, I was an addict, so not true, I have real pathology but they don't believe me here.
My cells in my pancreas are burnt out, so if I have an acute episode my amalyze lipase don't elevate, I get the shakes, a temp,and sick.
Last acute episode I was sent home, I can't have any pain relief, as a nasty Dr made sure he stopped that, abusing his power

4 years ago, I saw a gastro specialist with my then husband, he said come back in a few years, so I can diagnose you with Pancreatic Cancer.. I was horrified but what he meant was Chronic Pancreatitis can lead to Pancreatic Cancer, I never saw the Dr again as no follow up, never has been.
I get pain flares more frequently these days, I have nothing for pain as they won't let me, yes inhumane.
The pain comes and goes, I used to take Creon, it's a digestive enzyme for CP, but I found it not helpful as the episodes come and go.
I can't and don't eat much, and yellow floaty stools, that smell yucky.
Oh yes, last CT years ago, my pancreas is dying, it's called Atrophy so no follow up, I don't even have a local Dr, I see a nurse, that's it.
I travel an hour there, and back, as short in Drs in my country.
She keeps saying let's do bloods, every time.. I requested a CA 19-9 which is a Tumor Marker for the pancreas.
It's is elevated, to only 49,but has risen, no action by the nurse, or anyone
Last week I saw the Nurse as my stomach upper and my back same area, was in agony, I said to her, Look the amalyze or lipase don't show, my cells are burnt out, and she pushed down on pancreas and set the pain worse.
I asked for the CA 19-9 test, she didn't do it, she wasn't listening, I went back, then she did it.
So my Gamm GGT, AST(liver and pancreas enzymes)are rising and very high too.
My platelets low, my WBC and neutrophils, and lymphocytes all low, and dropping.
Yet here I am, no follow through
Im on my own, and I know I will probably get Pancreatic Cancer.
I have lost 20 kilos in last year, no action and lastly I'm so, so so tired
Next is a bone marrow biopsy that I had to pay big money, to go private, the tiredness is crippling, I don't know why, but that's a run down.
Healthcare in this country is 3rd war almost, and I have been labelled as something I'm not.
I'm 61 soon, I'm sick, and getting sicker, but the attitude of health care, is called, oh sorry, you fell through the cracks, and that's it, nothing I can do, if in pain, I have to suck it up, I used to take pain relief as I needed it, I stopped taking it 4 times to lower my tolerance on this 4th time, this nasty Dr said, he's going to make sure, even if I have cancer, that I never get pain relief ever again, because I made a complaint about him, serious too, so he didn't like it, so everyone listens to Drs don't they, even when they lie, which he has, so no matter what, even if it's advanced to cancer, probably has, no action, no relief, no dignity, no life, that's me though, my story.
Chronic Pancreatitis is serious, I have double duct sign, no action, pneumonia, no action.
A splenic Artery Aneurysm, no action.
Cirrhosis of my liver, no Dr watching that,
It's really bad, as I was a nurse in Australia now I'm sick in New Zealand and can't get any help, they don't care, through the cracks, I went, and stay.
I hold on to faith, God, because HE is the only one walking beside me, through this nightmare.
Feel free to ask questions if I left anything out about Chronic Pancreatitis.
I also have a gallstone, surgeon refused to remove it, it got stuck once in my bike duct, that was a living hell, they won't remove it.
So I will leave it there
All the best
Anne-Marie

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Replies to "Hi, I'm new here and from New Zealand. I have Chronic Pancreatitis and have had it,..."

Hi, @kiwigirl63, and welcome to Mayo Clinic Connect. It sounds like you've been through a lot of pain and significant disappointments. I'm very sorry to hear about that.

Hoping you can connect with others here in this discussion about chronic pancreatitis such as @palermo1 @cc8 @penelope52 @choosejoy and others who can empathize with your pain and provide some support as you seek answers.

When did you have your last flare? Was there something that brought you some measure of relief when that happened?

I have chronic pancreatitis, I take creon it does help with flares sometimes, but I still have very smelly poop, I had to change my diet, its a very horrible disease, but my Dr said its not related to pancreatic cancer, she doesn't think it will develop because of it , I'm not in horrible pain over the counter meds and a heating pad help me, I'm sorry about all your going through, Drs sound horrible where you live.

Oh my gosh- I thought the doctors and nurses lacked a shred of empathy here in the states but what you describe is criminal. Basically, no one is helping you and on top of that they are denying you pain control and pronouncing it is just a matter of time until you get cancer. Which by the way is so totally not true. Yes there is an increased risk for pancreatic cancer but it is basically an unquantifiable risk. And like all kinds of cancer , pancreatic cancer risk is also increased by risk factors that are in your control to modify to the positive. Risk factors like smoking, drinking, inflammation level, vitamin deficiencies , oxidative stress , chronic pain, mental stress etc. these types of additive risk factors are modifiable to a great extent with changes to diet and lifestyle changes. Things they should be helping you with. Instead , I imagine every time you see your “care” NOT team you are made to feel even worse. Do you have any other options for care where you live? Like seeing a registered dietitian? Or access to medical cannabis or CBD to control the pain? Any kind of alternative care options? Would it make sense to move back to Australia instead of staying in New Zealand? It sounds like in Australia you had more options for informed care. What you are enduring is completely inexcusable. And perhaps driven by ignorance about the condition. The hold over legacy of the time when people thought only alcoholics got Pancreatitis. So no one bothered to help them . Now it is known that is just not true. However change comes slowly to health care and whomever you are dealing with has not kept up with the times. Yes alcohol will definitely damage the pancreas but many other mechanisms do as well. Like. The gallstones you mention ( the most common cause), genetics, congenital defects, smoking, high triglycerides, infections, damage from medications taken, autoimmune pancreatitis. Both gallstones, and autoimmune are more common in women as well some of the medications that damage the pancreas , like estrogen are more commonly given to women. The medical care you are receiving is evidently completely uniformed about any of this. And if they are uniformed I do not see them ever helping you feel better. You deserve so much better I pray you can find a way forward to remain hopeful and to find someone else to help you manage your condition.