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Could this be chronic pancreatitis?
Digestive Health | Last Active: 2 days ago | Replies (55)Comment receiving replies
Results came back for second elastase test it was normal, fecal fat normal, gallbladder hida normal. I am feeling very lost as to what's causing these issues. I did a full 180 on my diet incorporating healthy grains decreasing fats and sugar. Increased fiber intake. Stools are still lighter in color than usual but aren't yellow as they were for weeks. I started using florestor this week as well. I have had a few normal stools, at least normal to how I remember them being last year before all this began.
I met with gastro this month and their diagnosis is a brain gut disconnect where I am still receiving pain signals though the infection is gone. It's a possibility that I am not dismissing entirely but I still haven't gotten a real answer on iron deposition issues over my liver and pancreas. I also noticed on another scan for a separate issue that they noted a splenule, I am reading there are some complications that can come from these and they can be mistaken for neuroendocrine tumors or vice versa.
Not entirely sure how I feel about this brain gut disconnect as my symptoms under the rib were mild in March where it was a feeling of having something under my rib which then flared into intense pain the beginning of April throbbing, stabbing in front and back of ribs then changed into itching crawling and shooting nerve pains across my rib and up my back. This went on for two weeks and now I am again back to the feeling of having something under my rib, and my back is inflamed and only on the left side mid back and shoulder blade.
I am seeing massage therapists for my back and a physical therapist too but neither have helped yet. There is a small lump in between muscles in my back that may be a knot. I will try to have it checked out by my doctor.
I had an MRI done of my spine as well that showed no tumors or anything sinister in March. I will try other gastro teams to see if there is anything they see but I am beginning to lose hope here. Not sure if I will have another flare up - we shall see. It's been a really nice quiet week I am appreciating it very much.
Is there anyone on the board that has chronic pancreatitis that can describe their symptoms? Is the pancreas visibly enlarged in scans, is the pain constant, are there flares? What causes flares? What was the definitive scan or test result that warranted the diagnosis?
Replies to "Results came back for second elastase test it was normal, fecal fat normal, gallbladder hida normal...."
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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I've had the pain underneath my ribs but I also had surgery on my lung but then it swelled up 8 months later which is now and they're checking my pancreas which I never even thought of. But I've had blood in my stool years ago and I think I messed up. So as for thinking, there's something in your ribs. Yeah I think that maybe the reason I never healed or thought I never healed. Also I had low oxygen before my lung was removed all the way into the '70s which can kill off a lot of your organs. I had multiple organ failure sepsis, pneumonia and covid. So they did me and and then they gave me so many antibiotics. They made me toxic. I smelled smoke for months but the most miserable I've ever been has been in the last couple months and it looks like it's swelling on that side and I can't stop going to the bathroom and again he told me I had blood years ago but I never followed through