Pancreatitis Diagnosis Toolkit

[Sofia_MC]

Did you know that, in the US, chronic pancreatitis is classified as a rare disease? This disease is misunderstood even by medical professionals, which can leave patients in search for a diagnosis for years, some even decades.

We've created a toolkit that patients can use to ask for the right tests and record their symptoms. This will help patients receive an accurate diagnosis in a shorter amount of time.

Check it out: mission-cure.org/patient-re...

[madonbrew Pioneer]

Hi Sofia,

That’s a really well laid out and informative booklet and I’m sure will help people to ask more direct questions and ask for the tests they need much sooner.

I don’t know how pancreatitis is classed here in the UK in terms of rarity. I think too, relatively rare and like so often, an alcoholics disease. Even my own sister sees it like that despite me trying to educate her about it.

My pancreatitis took 3 months to diagnose which seems not bad in the scheme 😅 and the fact that I was only 19 and had never drank. It was my liver that seemed to be confusing the process as it was functioning really poorly but through scans and biopsy looked ok. I always remember a particular ultrasound scan and the radiographer said ‘oh this looks like a snow storm, I’m just going to ask for another opinion.’ You know by the time the 4th medic is asked, that something really is looking a bit different/wrong.

It was actually a GP who eventually diagnosed my pancreatitis and even when admitting me to hospital said that I don’t look ill enough. I was doubled over in pain and could hardly walk and had lost 2 stone but I didn’t have a temperature and I wasn’t vomiting.

But at least I got diagnosed! Then it took a year or 2 to figure the cause! Thankfully I had an amazing consultant who was on it…considering this was back in 2000ish when autoimmune pancreatitis was just becoming a known disease…in fact my consultant flew to Japan for me and it was basically when they were coming up with the criteria to diagnose autoimmune chronic pancreatitis. He said usually an international medical conference is based on a minimum of 1000 patients but this one was based on 15 of us worldwide.

I’ll stop rambling on now, but yes, it can definitely take a while to get diagnosed.

[KarenB12 Ambassador]

Wow, Can't believe I didn't see this post. It was posted the week my husband had a detached retina and I obviously missed it completely.

This is a fabulous brochure. As much for the patient as for the medical staff. The way it's laid out gives the patient a 'timeline' of diagnostic procedures so they know what to expect and if their dr. is doing everything possible in that regard, but it also gives the dr. that same timeline of tests. Not every dr. or hospital follows that timeline of tests. Regardless of order.

I'm still amazed that after 37 years, PC is still as clouded in mystery as it is. I got extremely lucky in my 1st attack to get an ex-army doc who had dealt with tons of PC in soldiers over his career. So he was well versed in the disease, at least.

One thing that's always stuck with me, though, is each time I moved and had to find a new doctor, they would ask, "What caused your pancreatitis?"

For years, I had to answer, "I guess it was alcohol." As that was the 'reason' given on my hospital records after that first attack and that first doc had convinced me that alcohol could be the only possible cause. (He'd seen so much of it during the war)

Sure, I was a heavy drinker in my teens and early 20's, but I had my 1st attack at 24. I found it hard to believe I could have done that much damage with just drinking by the time I was 24.

Over the years, I found out that two of my uncles on my father's side died from complications of pancreatitis. One was eventually labeled "Cirrhosis" the other, just 'Pancreatitis'. So I'll never know for certain what caused their deaths, but obviously, it runs in my family. My father stopped drinking and smoking when he was fairly young (in his late 30's) so he never fully developed some of the issues but I know he had some pain, bloating, gas, and he always had reflux.

I especially appreciated the line in the final box:

Doctors should conduct a thorough investigation of the causes of pancreatic inflammation before labeling ”idiopathic” or ”alcoholic"

If more doctors did just that, we would see a lot fewer devastated patients. Just the thought that I had "caused" this disease by my drinking, tormented me. I was a full-blown alcoholic by that time (although I didn't know it - everyone I hung around in those years drank as much as I did) I did try to stop for a year or two when it first happened, but it only lasted a few weeks to a month before I'd be back at it again.

Each time I had an attack, even during the periods I hadn't been drinking, I convinced myself it was no use. I had been labeled an alcoholic with chronic pancreatitis who had little time left to live.

To be honest, when they told me in 1986 I had 9 mos to live and again in 1989 that I had 6 mos - I got even worse. I had the ol' Can't change it now, might as well enjoy the end kind of attitude.

If I had known there was HOPE - had I known there were possibly other reasons behind my health issues - Like maybe smoking? I know know that smoking could have been as much at fault as the alcohol!!!

Between the ages of 17 & 21, I used a LOT of cocaine and hence, I probably smoked 2 packs a day most of those years. Not only does coke make you chain-smoke, but we also sat around in dive bars, playing a game where you put a napkin over a glass and hold it on with a rubber band. Then you put a quarter or nickel in the center and take turns burning holes around the coin until someone makes it drop into the cup.

(You can go through a LOT of smokes in one night that way) 😂

Point being, I WISH I'd have had a pamphlet or brochure back then! I would have saved myself a lot of pain and personal anguish. I carried the guilt of my disease for a very long time.

So, thank you for putting this out. I know it will help many, many others. ♥