What has been your experience as you sought care/support to manage pancreatitis?

[AviK_MC]

Last year, Mission: Cure published a groundbreaking report (mission-cure.org/our-approa... to elevate the voices and experiences of pancreatitis patients and shares concrete ideas to improve patient outcomes and quality of life. I invite you to share your journey and ideas to improve health outcomes.

[KarenB12 Ambassador]

I'm not sure there's enough room in the textbox for me to describe my experience, so I apologize in advance for the long post.

But after reading the report, I feel the need to share. I guess I tend to downplay the bad times because I'm not in an active struggle with Dr.s regarding my condition at the moment. But the road to today was hell, to be honest.

I was extremely lucky when I got my first attack. I went to the ER and the doc on call was an ex-military dr. and he was well-versed in pancreatitis (hereafter referred to as PC) While he ran tests on my gallbladder and a few other things "Just in case" he knew almost immediately it was PC. He'd dealt with it so often in the military. There's a lot of PC in the military, he said at the time, because of all the alcoholism.

The Dr.s answer was an automatic 2-weeks on IV, NPO (nothing by mouth), pain meds, and bed rest. I recovered well and was sent home with scripts for Enzymes. At the time, the only explanation I received was that they would help me digest my food as I was no longer capable without them. That I would most likely have to take them long-term, and that alcohol was "undoubtedly" the cause of my PC.

I had been a heavy drinker from the age of 16 to 21 (I was married at 15 and pregnant) But by the time I hit 21, I was what you call a 'Social Drinker' - my husband at that time was very sensitive to alcohol, he'd been married to an alcoholic for years before we met. So that had slowed my drinking down considerably.

I was 24 when I had my first attack. I'm 60 today.

The first few years I had PC attacks, I was in the same area and had the same dr.s. So it wasn't difficult when I had an attack, I could just refer the ER dr to my records and current GI doc. That went on for approx. 4 years. During the first couple of years, I had a recurrence about every 2-3 months.

Then, they started coming more frequently. - NOTE: I will admit here that I was an alcoholic. I had a severe addiction but didn't realize it until I tried to stop drinking (temporarily) during that 4 year period. I resorted to "nonalcoholic wine" and other things, thinking it would soothe my craving. It helped enough I got off the alcohol for a couple of years.

But then I started again. I struggled with the alcohol, stopped, started again, stopped, started. One year during that period, I was in the hospital for 196 days total. I was having an attack every other month.

Then we moved.

My ex was a hotel troubleshooter. We moved to a place and lived there while he fixed the hotel up, got it running in the black again, then we'd move on to the next place. We moved approx. every 2-3 years after that.

My drinking came & went. I would have an attack, end up back in the hospital and come out sober. I'd stay that way for a few weeks or months, then start up again.

We moved around like that for another 8 years. My experiences during that time with attacks & dr.s were miserable. Because I might have alcohol in my system when I went to the ER, I was generally passed off as a drug seeker. EVEN when my enzyme levels were through the roof!

This never failed to amaze me, that they could dismiss the disease because they felt it was self-inflicted! I was in the hospital at least once (often more) in each city we lived in. Each time I had to fight to get them to check my enzyme levels. Each time I fought for pain meds, each time I had to explain the ENTIRE sequence from the first attack to the present.

The main problem (aside from dr.'s with preconceived biases) was that an attack always sends you to the ER. There's no time to send for records and wait for them to arrive. You have to remember, this was back when computers were 'new' and they didn't have the whole system set up where a doc could look up past records. You have to sign a release, that would be faxed or mailed and then the records would be mailed! Sometimes they would fax over the most recent docs.

So it might be a week before they had complete records showing my past history of attacks. Can you imagine?

I was left to fight for myself until the dr.s had "proof" of my disease. But even then, I had dr.s tell me I was just a drug-seeker. I walked out of one ER, because I had alcohol in my system, and they wouldn't give me anything for pain until they could confirm what I'd told them about my PC. (Wait for records) even though my enzymes were elevated. (I had regular trips where my Amylase was over 5,000)

I must have seen a dozen different GI specialists and hospital rooms during those years. Each attack, I had to start all over from scratch. And each time, I'd have to try and convince the doctor I wasn't just looking for drugs.

I had numerous harrowing experiences. After a time I got so sick of the "Fight" in the ER for proper care that I would wait at home, in excruciating pain until all the alcohol had left my body before going to the ER. That wasn't the smartest thing, as I had dr.s tell me 3 different times that I could have died had I waited much longer.

In 1985, (one year after my first attack) they said if things continued on their current course, I had 9 months to live. That made me stop drinking for 8 months.

In 1989, they gave me 6 mos to live. I stopped drinking for almost a year after that.

I struggled with alcohol for a total of 29 years before I finally got sober for good. One time, I had waited at home for the alcohol to leave my body, it had been 2 days since the attack began and I had stopped drinking. I couldn't take it anymore and went to the ER. My GI doc admitted me and for the next 3 days, I had hallucinations. I thought the dr. was going to kill me, the walls were talking to me and I had a "bad spirit' in the paper towel dispenser. 😂 But I never admitted to drinking or that the fact that I had stopped cold turkey might be the cause of my hallucinations.

So, I kind of lost it for a few days seeing and hearing things. I tried to keep it from the nurses & dr.s. After 3 days like that, I finally admitted I had been drinking. That pissed the dr. off so bad, he locked me up in the psych ward. I stayed there until my attack had subsided.

After that, he refused to prescribe any pain meds. I kind of understood, he felt deceived. But my condition hadn't changed. Regardless of whether it was self-inflicted or not, I had severe acute pancreatitis.

I had a 'remission' of sorts. No attacks for nearly 5 years. During that time, I finally got sober, I got divorced and remarried. A year or so after I got married, I had another attack. But it had been so long since I had one, and the pain was centralized in a different place than usual. Normally my pain would be left-mid abdomen, radiating through to my back. This time, it felt more like a bladder infection. It was located lower than normal. So I never even considered it was that when I went to the Er. in fact, we had just moved THAT DAY into a new house and were waiting for the cable guy to come hook us up, so my husband dropped me at the er and went home to wait for the guy. I had to call and tell him they were going to admit me.

When they came back and said "You have acute pancreatitis" and started to explain what that meant, I explained my history. That was a bad attack and I ended up staying in the hospital for a little over 3 weeks.

After that, we moved. A few times. I wouldn't have regular attacks like before. This time, it would wait for months then suddenly I'd have another attack with no warning. During those years, I had more trouble than when I was drinking as far as medical care.

I recall one visit to the doc where I had pain in my upper groin area. The doc ordered a CT and some other tests, outpatient. One of them required the use of Barium. (A chalky liquid you drink so they can see what's going on inside.) They give explicit directions on how to get that Barium out of your system. Well, I have a very hard time drinking liquids. Always have, but it's been much worse since I got PC.

If I drink more than a couple ounces at a time, It makes me vomit. My stomach doesn't like to be full of liquid. So after the test, I did my best to drink the amount they required. A few days after that, I had an acute attack. In the ER, they did a few tests and came back to tell me I had PC and it was all my fault.

I tried to tell them I'd had it for years, but hadn't had a recent attack. But they shamed me so bad, I gave up. I've never had medical professionals treat me so badly. They told me this was entirely my fault for not getting all the Barium out of my system. It had blocked me up (constipation) which caused an attack. Throughout that visit, I was humiliated by dr.s, nurses, and aides.

I've never had an experience with my illness that made me so ashamed!

I can't begin to list the bad experiences I've had with doctors since 1984 when I was first diagnosed.

I spent 3 years flying back & forth from whatever state we lived in to Racine WI where there was a Pancreas specialist. He put stents in and I would be good for about 6 month, then they'd clog up and need to be replaced.

On my last visit there (1990?) he told me the only options I had were the Whipple or resectioning surgeries.

I did my own research on the procedures and spoke with a dozen or more people in various forums and decided the odds weren't in my favor. It wasn't worth the additional side-effects of the operation and in other cases, it came back anyway.

I continued having attacks long after I stopped drinking (I quit over 20 years ago) But I never gained the respect of the medical community.

I was denied service by some dr.s, they'd just state outright they didn't handle PC patients.

I had an exceptionally hard time once when after a year or so with no attacks, I had 3 close together. My family dr. said she couldn't treat me, she wasn't familiar with the disease. So she called in a GI dr. to look at my case. He told her he'd never known of a PC patient in the pain I was, so it must not be real. She immediately stopped my medications over his comments.

I tried to find another dr. in the town we lived in, it was fairly good sized, 100K plus. but not one single dr. in town would take me after I told them I had PC. There were 2 major hospitals in that town!

By this point in time, my pancreas was so shot I no longer had elevated enzymes with an attack. They had to go by my word until they did more blood test for other indicators. But without lab reports, most new dr.s wouldn't deal with me. It was a ridiculous time. I had records showing I'd had PC for 20+ years yet it was like they were afraid to take my case.

More concerned over prescribing a few pain pills than the health of the patient. And in many cases, it wasn't even the medications, it was their lack of knowledge.

It took me almost 5 months to find someone who would see me. Over that time period, I ended up seeing two different female dr.s that weren't totally on the up & up. They both had practices that were in odd places. One was in a small strip mall bldg and the other a 1940's residence.

The one in the stip mall ran all hours of the day & night and always at least a 3 hour wait. She did nothing but write scripts. Not just the pain meds, if you could show her your recent bottles she would write others too. Things like Creon or Pancreas, potassium, and, of course, narcotics.

That felt like a true low point in my life. I'd finally gotten sober, my health seemed to improve, (I didn't die like they said I would) I was newly married with a brand new business. And then, this. I felt like a criminal just trying to get the medicationms & care I needed to survive.

In the end, I had to drive to another town, an hour and a half away to see a GI doctor. I waited almost 3 hours to be seen (after my appt time). When he came in the room he had my chart in his hands (I had my records sent ahead) - he opened it, then closed it, tossed it on the desk and said, "I know why you're really here and I have no intention of prescribing you pain meds." Then he walked out.

I didn't even get to say hello.

Three weeks later, I was flown to St. Louis where they removed 22 stones from my pancreas.

When they released me, I told my husband I wanted him to fly me to that doctor's office in my hospital gown so I could show him where I'd been the last 2 weeks. 🤨

(Sorry, you get a little vindictive after years of mistreatment)

These are only a small sampling of the experiences I've had over the years. I gained over half the knowledge I have about pancreatitis by internet searching and forum groups. I've had conversations with doctors where I knew (much) more about my ailment than they did.

It's hard to believe that this is how a disease in handled in America today.

😟

Again, I apologize for the long post. ♥

[AviK_MC Partner in reply to KarenB12]

KarenB12 - thanks so much for taking the time to share your experience. It's disheartening to read the innumerable negative experiences you had while being in excruciating pain. Your post resonated on multiple levels and it continues to shock me that doctors can refuse to take your case and/or attend to you when you are in such excruciating pain. You are truly a pancreatitis warrior!

While alcohol can trigger pancreatitis, recent research suggests that some individuals are more vulnerable because of certain genetic mutations. We are trying to change the narrative around pancreatitis - from disease of the alcoholics or drug seekers to that of a medical condition that requires multi-disciplinary care to improve health outcomes. Because labels such "drug seekers", "alcoholic", or "self-inflicted" impacts and further skews the doctor-patient dynamic and impacts the care provided.

I am glad to read that your current doctor/care team is supporting you. I look forward to continuing this conversation with you here.

Avi

p.s. - here is one proposed framework to care for pancreatitis patients; would love to hear your reactions to it - mission-cure.org/our-approa...

[KarenB12 Ambassador in reply to AviK_MC]

Thanks, Avi, I've spent quite a bit of time on the website, reading all the different outlets and areas of care. To be honest, it's like a dream come true. Just to see the word pancreatitis being featured!

I feel like I came from the dark ages when it was a word that should not be uttered. 😂If MIssion: Cure were to attain even a portion of their goals I see it as a huge win.

One of the things that impressed me the most was under Delay Disease Progression. No one has ever talked to me about the progression, the possible complications, etc.

Also this: "a care plan that is calibrated to a patient’s symptoms and response to treatment."

How many times have I heard "Well that's not typical with...." I don't give a damn what's typical, I'm telling you my symptoms as a patient.

Anyway, I can't thank you all enough for what you're doing. Hopefully, it will save many new patients the shame and anguish so many have suffered in the past.

😘

[madonbrew Pioneer]

Hi Avi,Sorry for not answering for a while, We currently haven’t got our WiFi connected for a week or so and my data signal is rubbish.

I’ll reply another time but just so you know I will answer asap !

Dee 🌺

[Hidden]

My journey with the healthcare system and getting diagnosis for pain has been the worst! Most doctors Don’t seem to care if you are in pain! Pain frustrated them because they can’t just waive a magic wand and remove it or give us a magical pill and boom it’s gone! I remember my first interaction with pain and dr told me to take a Advil and you will feel better which obviously it didn’t! My journey to get a diagnosis for pancreatic disease would be the same! In 2017 I was experiencing severe back and upper GI pain! Dr told me I was fine it was just my other pain conditions though I knew this pain was different! My mom was actually the first to say it sounds like you have acute pancreatitis! My advised me pancreatitis is a horrible pain! So I went to dr and advised to have me have blood tests and of course they came back negative! I was told unless it was acting up at that time they couldn’t catch it! So fast forward in 2019 I started throwing up food and couldn’t keep it down so my mom called emergency services and they admitted me and thought it was a blood clot and gave me pain meds which took a few times to make me feel better! So I was given a mri and ct and X-ray and then dr who was a resident discharged me without checking the results of the scans! So I go home and feel better but start to get pain again so at eye dr I’m reading the results of the scans and it says gallbladder and I need a ercp because I also have a stone! So my internal med dr I called and said you need surgery now and should have been already done! So I call my trauma surgeon who did my 4 other surgeries not related to gallbladder! She does the surgery and I feel better so after a few days I start to have Terrible pain again so my trauma surgeon says your Gi dr left so I had to get a new Gi dr and they advised no patients for 8 months I called and called everyday and finally got a appt for a month! So she advised me I have IBS and need a diet so at this time I can’t eat anything hardly so I advised could it be something else because I can’t eat so she advised me to get blood work! On the blood work it advised I had highly elevated liver enzymes so they next day I was referred to a liver dr who also does ercp so he took me in the next days as a emergent patient to give me a EUS! ERCP and he found a huge stone that he removed gallstones blocking the pancreas! So he advised you should feel better if you don’t call me and get a MRCP. So I was still in so much pain so I made appt with pain dr and he advised me to see liver dr again so he says you have chronic pancreatitis due to the gallstones most likely he put me on creon and the creon didn’t help much at first so he advised to come back and see him! So I tried to make a appt with him And my gi dr sees me not the pancreas expert I was seeing so she says I don’t know why you still don’t feel well I advised dr said I need to increase my meds she says no not yet! So fast forward 2 years she finally adjusts my creon and I am feeling a little better but can’t gain weight and still am in so much pain which she tells me she doesn’t know why! So I saw pain dr At appt and he advised me that I need to see pancreas specialist again for my chronic pancreatitis with EPI! So I am going to contact him because my GI doesn’t understand pancreatitis and can’t understand my questions! So I had a 4 journey maybe even longer to get diagnosed with chronic pancreatitis with EPI but still need a specialist!

[Hidden]

My experience would be much longer but I wanted to focus on my chronic pancreatitis with EPI.

[AviK_MC Partner]

Briana, thanks so much for sharing your experience. It is gut wrenching to read your story and what it tells us about how our health systems are set up...and the number of missed opportunities to really care for people who are suffering. I hope you are able to get to a pancreas specialist soon. If you are based in the US, we may be able to point you to some specialists that other patients have had a good experience with....email me if that would be helpful.

[Hidden in reply to AviK_MC]

Sure, thank you