Pancreatitis Support Group

Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption. Patients with chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...

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junker 01/26/2016

I'm not diagnosed with CP. Maybe because the Drs keep repeating the same tests with no results and no answers. No relief. They all think I'm some hypochondriac or drama seeking self diagnosing web browser. But, I've had no choice but to go to the web because none of them can give me an answer.
The pain/episodes are becoming more frequent and severe.
Brief history: Test performed since 2009-
Upper Endo, colonoscopy, cholecystecomy, CT's (many), US, hydascan, MRI, low bowel follow through. Until recently my blood levels were usually normal. In Sept directly taken during an attack they came back with low Neutrophils, low WBC, high monocytes, low BUN
Low ALT, High sedation rate.
My symptoms are severe debilitating upper &left abdominal pain that is above belly button, radiates to back and chest. Constipation, diarrhea (depends on which way my body decides to go), lack of appetite, weight loss, fatigue, low stamina, enlarged lymph nodes in groin, neck and both sides & under armpits.
I am a smoker, but not a drinker.
I have read on other posts how everyone seems to have varying symptoms and pain levels. I have no nausea unless the pain gets so bad that it causes it. I have been diagnosed with IBD many years ago. But, these symptoms and pain are different than what I ever had with the IBD.

I am in a financial crisis right now due to many factors, but the biggest one being my son's health. Recently diagnosed with Type 1 diabetes and Kallmans. Also has a birth deformity that is just now getting the Dr's to fix. So, with all the medical cost helping him get better I just can't waste $ on trying to find a Dr for me any more. I feel like it's a waste of time and money because they won't listen. I have read that several of you also had a hard time getting diagnosed.
My frustration is through the roof and so is my pain. I'm in tears now as I try to bare sitting here writing this. But, I'm desperate and thought someone could offer me some advice, help with home remedies or something. I am down to eating soup, mashed or baked potatoes and not much else.
So, my main question, I suppose, is this; if I go to the ER is there anything they can do to help alleviate the pain/attacks? If I can even get them to listen. I have taken pain meds in the past and they never seem to touch the pain. Only when I was in hospital and they gave me dilaudid was there any relief. But, who can function or live on dilaudid?
Second ? If I don't get medical help is there any real danger? It seems the ones of you who have actually been diagnosed and found Dr's to treat you are just put on home remedies like diet and enzymes. Although I have read some of you get hospitalized for it.
As I previously stated I can't afford to waste money just yo find out there's nothing that can be done.
My son saw the obvious pain I'm in and asked what he could do. My answer was put a gun to my head. I'm so sick of being in pain

Sesser 01/27/2016

Have you been tested for auto immune issues? Gastroparesis? My pain with pancreatitis is upper left and right stabbing pains but others have a wrap around vice pain. My lipase is always elevated too, have they tested this? Have you had an EUS or Secretin MRCP? Your results do not really sound like pancreatiits to me, maybe something systemic esp with the sed rate

Sesser 01/27/2016

Also maybe ask your dr for nortiptyline, helps w nerves of the gut and not a narcotic.

yeuker 03/01/2016

And quit smoking. You can rationalize it any way you want but smoking is super hard on the pancreas. If you want the pain to stop, you need to help yourself because unfortunately this isn't a disease that after you are diagnosed, someone fixes you.

I smoked for 12 years and quit. I have lots of friends that quit reading a book called 'the easy way'. In google search for

Allen Carr-Easy Way To Stop Smoking.pdf

First link is a PDF of the book so no real cost. Would for sure help with money too but that comes second to the pancreas pain. I'm not cured but got my pain under control. It took me a year but I did it.

yeuker 03/02/2016

Was thinking about my response last night. Please don't read it as judgement and instead take it as the advice you are seeking. The biggest thing I have learned from this disease is that there isn't a doctor in the world that is going to cure you. The only person that can help is the person on the other side of the mirror and is a long, hard road to recovery. Even with hard work and significant lifestyle changes, most of us still have daily pain but it is manageable. Good luck.

jasp435 03/13/2016

What I have found is that doctors can do very little for CP except enzymes and pain medication. The best thing you can do is go on a 3 day fast with liquids and see if it helps you. If so, then you can start to introduce simple foods. I suspect you have something else going on with your positive ANA and RF factor tests. I am no doctor, however. But even doctors can't fix some things so you will have to try whatever you can do yourself. Good luck to you.

lisaframptondobson 03/14/2016

Have your doctor draw blood for lipase and amylase counts... With pancreatitis... They will be elevated...also as someone suggested An EUS which is an internal sonogram would give the doc a look at your pancreas... Best of luck to you

bdspivey 03/28/2016

i was recently discharged from the hospital a week and half ago, they diagnosed me with me acute pancreatitis, enlarged gall bladder full of gall stones, and pneumonia...i was there for a whole week, on dilaudid, antibiotics, and fluids thru ivs...they removed my gall badder, and had me on a CLEAR liquid diet. i was only allowed to have chicken broth, jello, and popsicles. and they sent me home after that week to stay on that diet for another whole week...they told me that this diet was because they had to get my pancreas stable and uninflamed, and the only way to do that was to not make the pancreas work, the pancreas is not meant to do much, and when we eat all this bad things for us, it makes our pancreas spiral out of control, which leads to the severe pancreas attacks like i had, i felt like i was dying, and to be honest it was the scariest thing to go thru...i couldnt breathe, my blood pressure kept going down to scarey levels, i was sweating very bad and when i say very bad i mean my clothes and hair were soaking within a few minutes, i felt numb and tingliny all over like i was going to pass out, i couldnt walk without staggering, ambulance was called and they took me to er, when the emt was checking my blood pressure on the way, she told the driver of the ambulance to upgrade, which meant to drive faster, she said my blood pressure was getting to low for her comfort...i have heard that these attacks can last an hour to 5 hrs, my first attack was about 2 hrs long and it was 2 weeks prior to the second attack...the second was a nightmare and very severe...it is important to call 911 when an attack starts, because the doctors told me it can be life threatning if you dont get treatment when they happen...im hoping mine stays away sense they removed my gall bladder and the stones...good luck to you, i hope this helped...

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