📣 Discussion Topic: How did you find out your pancreatitis was chronic?

[Skye_MC]

Pancreatitis is a progressive disease, sometimes diagnosed as acute pancreatitis or recurrent acute pancreatitis before becoming chronic. If you've been diagnosed with chronic pancreatitis, share your journey in the comments below. How did you first learn about your chronic pancreatitis, and how has your experience with the disease unfolded over time? 👇

[Susaberry]

Hi Skye, My journey to diagnosis was difficult. I am 71. Looking back, I think it began when I was 7 (1959). My parents were told I had a stomach ulcer. I remember throwing up a lot. I remember my grandma asking my mom what I could and couldn’t eat. I’m curious how ulcers were diagnosed back then; specifically what tests were available. I was never a drinker because alcohol made me ill, so I just stopped because I didn’t like the taste or the way it made me feel. At age 22, I began a high fat, low carb diet. About 3 weeks into the diet, in an instant my heart began racing and I thought I was dying. At the ER, I was told it was anxiety. I started and continued to have panic attacks until 1989 when my doctor prescribed Xanax. I still take it. In my late 20s, after going to a picnic where there was little but high fat food, I was hospitalized for 10 days with severe pain and uncontrollable diarrhea. My doctor never told me what was wrong. I assumed I had food poisoning. However no one else at the picnic became ill, which at the time I thought was odd. I have no idea why my doctor didn’t tell me what was wrong. Over the years, I would become nauseated every Thanksgiving, Christmas, and after eating picnic food. My family used to laugh because I would tell them, “I’m so sick.” They thought it was from overeating. It wasn’t because I noticed the pattern and made it a point keep portions small. We moved away from the area in 1997, so we stopped going to holiday dinners and family picnics. When I was in my 50’s I began taking fish oil daily. Towards the end of my 50’s, the fish oil started giving me pain about 20 minutes afterwards, so I stopped taking them. In 2012 (60 years old), I went home for Thanksgiving. I thought I’d caught a bug while back home. I kept getting sicker. I was nauseated and in horrible pain. When drinking water hurt, I went to the ER. They gave me iv fluids, cat scan, iv pain medication, said my blood work and scan were fine, and sent me home. I didn’t get any better so two days later, I went back to the ER. Same treatment. I still couldn’t drink water so I went to the ER for the 3rd time. This visit, my cat scan showed pancreas divisum and blood work showed low potassium. The ER doctor told me she’d never heard of pancreas divisum. She had to look it up. I was admitted with iv fluids and a GI consult. I had a MRI and upper endoscopy. The MRI showed nothing. The endoscopy showed mild gastritis. My urine was dark yellow. I told the nurse, but no one followed up. The hospitalist released me. I told him I was in agony and I couldn’t drink water without extreme pain. All he said was, “ You look well nourished to me.” He left the room. My husband tried to talk to him about releasing me while I was so sick. The hospitalist told him I needed to see a psychiatrist. Xanax was on my list of meds so I’m sure he assumed I was crazy. I went home still unable to drink water and in horrific pain. I started shaking uncontrollably. I told my husband that maybe it was extreme anxiety so we went to a Behavioral Health facility. I had an intake meeting. During it I was still shaking so uncontrollably, the counselor brought me a blanket. I was admitted as a locked inpatient to this facility voluntarily because I didn’t know what else to do. I had a physical as part of the admission process. My urine was dark brown. The nurse told me I had a UTI, but received no treatment for it. So there I was in a facility with chronically mentally ill patients. I hurt so much. I couldn’t get warm or stop shaking. I couldn’t eat anything so at meals, I just pushed the food around my plate. I knew I had to participate in group therapy or they might not let me go. The psychiatrist was nice as was my case worker. I knew they were watching how much I ate so on day two, I forced myself to eat and drink a little. At night, I couldn’t sleep because of the pain. Through the grace of God, by day three, the pain began to ease. I was able to eat a little more. Each day, I was able to eat. I participated in the groups. I was kind to the other patients. I was released on day six still taking Xanax, an antidepressant, and an appointment with an outpatient therapist. I could have died during the three weeks I had undiagnosed acute pancreatitis. God looked after me and allowed me to get better without any medical help at all. For the next two years, I had intermittent acute attacks. None of them were as bad or lasted as long as the December 2012 attack. I knew something was wrong with me. It wasn’t extreme anxiety or depression! For the next two years, I went to one PCP after another. All of them said there was nothing wrong. They blamed the way I felt was because I was getting older. The last one told me I had fatty liver disease. Finally in May of 2014, I went to see a gastroenterologist. The nurse practitioner ordered an EUS. The EUS showed mild to moderate chronic pancreatitis. The doctor said I must have had acute pancreatitis and didn’t know it. Finally, I had a diagnosis! I wasn’t crazy! The joy didn’t last long though because I learned what CP meant. I had my gall bladder removed and a temporary stent placement in 2014. I was hospitalized 7 times in the year following my gallbladder surgery. Today, I am holding my own. I can’t eat during the day without severe nausea. I have problems with gastritis and constipation along with osteoporosis. I have chicken broth and drink lots of water. I limit fat grams to 15 to 20 grams per day. I don’t trust doctors, even the experts. I went to a pancreas specialist in May. He told me if I wanted to eat a cheeseburger, I should eat a cheeseburger. I think not! This is my story. As God is my help and judge, it is the truth.

[Jackie1947 in reply to Susaberry]

My goodness what a dreadful journey you've had. Sending gentle hugs your way

[Skye_MC Administrator in reply to Susaberry]

Susaberry, your response left me speechless and with a mix of emotions – mainly, frustration with how the medical system, doctors, nurses, all let you down. The challenges you've faced, both medically and emotionally, are incomprehensible. I am so sorry that you were left without an answer for so long. Thank you for sharing your journey with us, and sending so many gentle hugs your way too!

[Susaberry in reply to Skye_MC]

Oh my, you are so kind. Thank you. I’m hanging in there!

[Signingfun in reply to Susaberry]

What a journey! The doctors really don't understand the pancreas. You've done an amazing job figuring out what works for you. Congratulations for living 71 years even though you have been misdiagnosed for so long. It is so unfair to you and other patients (including me) with pancreas issues. So much more needs to be known to not only diagnose pancreas patients, but also treat the disease effectively.

Anne

[BlueMoon65 in reply to Susaberry]

Thank you so much for being so open and describing your exhausting ordeals. I am about the same age as you, had a childhood peppered with vomiting attacks after any fatty foods ( and in Britain we had School milk daily…). and I never could tolerate much alcohol, but would usually eke out a couple or three drinks to look sociable as a young adult and then have a horrible hangover. Years of abstention, plus a very restricted diet, seemed to work, but by then I’d been told I had M.E. Like you, I was told I needed a psychiatrist, but a relative advised a change of GP, and he defended my having a strictly physical problem, so I was spared the horrors you experienced. Years later I had startling pain which was vaguely passed off as acid issues, so a few Omeprazole and off you go. In the past few years my body’s told me not to eat so many things, but last autumn it seemed to refuse to digest most food. I won’t enumerate all the stages of diagnosis I’m finally going through, but wanted to thank you so much.

[Susaberry in reply to BlueMoon65]

Thank you so much for responding! It’s terrible when doctors refuse to believe us. CP is a rare disease, and medical students spend very little time studying the pancreas. I keep hard copies of all my medical records. I looked up the records of the 2012 acute incident. Not one time did the ER doctor or the gastro order lipase or amylase levels, nor did they do a hiss scan. One would think they would have checked for pancreatitis. Anytime you want to check talk, send me a PM. I pray for relief for you.

[longingtrustingHIM in reply to Susaberry]

My heart goes to you for your past difficult journey to have a diagnosis. Mine was not nearly as long as yours, but the relief when I finally had mine was great. I pray that you will find more consistent professional support and help going forward. Understanding and compassion cannot be underestimated for chronic illness and how it impacts our daily lives. Thank you for sharing your story. God bless you. We can encourage one another on this forum. Be encouraged! You are not alone.

[Jackie1947]

Well I had no idea I had chronic pancreatitis until the results were read out to me following a CT Scan. It was looking at my Colon and Diverticular disease was confirmed. Far too many years being told it was IBS. I was shocked with the pancreas find,scared,upset. I could only think of my two friends who lost their lives with this.9 months later I'm still here . I didn't have to stop drinking because I didn't drink alcohol. OK I did have one glass Jan 2022 before diagnosis. I do get a lot of gut ache, diarrhoea but is that Pancreas or DD? I can eat certain foods one day and I'm ok and next time doubled up. Also have been tested for Microscopic Colitis. Will get the result next month. Also stress hits my gut. I still can't get my head around having chronic pancreatitis. I do know that my travel insurance has greatly increased. Hope you are well Skye.

[Skye_MC Administrator in reply to Jackie1947]

Thank you for sharing, Jackie. Unfortunately, a lot of the symptoms can overlap with other conditions, making it hard to pinpoint if it's from the CP or DD – which can lead to a delayed diagnosis like you had. It is scary and upsetting, and I'm sorry to hear about your friends. I've also heard from a number of patients who share a similar struggle with their bodies reacting okay to specific food one day and poorly to the same food the next. This may have to do with the level of inflammation going on in your body. Something that may help is using a food and symptom tracker app on your phone, which can help track any patterns in the pain. I'll leave a link to one with good reviews here, and I hope its helpful:

play.google.com/store/apps/...

I'll also leave a link to our guided meditation for CP:

youtu.be/5EwPijkSpKs?si=Aba...(Not working as expected?)

I hope it can help alleviate some of the stress too. Take care 💙

[Jackie1947 in reply to Skye_MC]

Thank you Skye. I hope 2024 treats you kindly.

[Susaberry in reply to Jackie1947]

As do I Skye.

[rockalley]

I began having pain right as the 2020 pandemic started, it was all left upper abdominal pain and a throbbing ache that would get worse with fat and with alcohol. So, I stopped drinking. Went to a GI recommended by my primary physician and we did an endoscopy. Found no h. pylori or anything that could cause the pain.

Waited a few months, still living in excruciating pain and living on small amounts of food. It came to be that I wouldn't eat for days as the pain would get worse. I didn't know this but apparently fasting helps when you're having a flare of pain but this pain was constant.

Had a HIDA scan - to test my gallbladder- and the pain got worse, so we thought it was my gallbladder. We waited a year until I had my gallbladder surgery to remove my gallbladder. Sort of helped with the pain - so we think it was adding to the pain as I later found out, through genetic testing, that my body makes gallstones very easily. So that was probably giving me gallbladder issues.

While I was waiting for surgery, I went to see another GI, who thought it was stomach issues such as an ulcer. Another thought I had IBS - which means they have no idea why I have pain but it's probably functional. I saw another GI that just gave me SSRIs to help with the pain as they wanted me to wean off opioids, which I rarely take as I'd rather deal with the pain than the side effects from opioids.

Finally saw a GI 2 years later at a teaching hospital who suggested we do an EUS and MRI/MRCP, both to look at my pancreas specifically. The EUS showed mild scaring on my pancreas and a pancreas divisum, which is essentially when your pancreas doesn't properly develop the drainage it needs to help push out digestive enzymes into your body. Essentially, your pancreas is being attacked by the digestive enzymes, which causes the scaring and the pain. That GI finally diagnosed me with chronic pancreatitis. I also found out that I don't have the genetic predisposition for pancreatic cancer, which is a huge relief.

We follow up yearly with EUSs to ensure my pancreas hasn't physically changed. So far, since I was diagnosed, it hasn't. I, unfortunately, had to change GI doctors and got lucky to see another GI who knows about chronic pancreatitis and we're about to do another MRI/MRCP to rule out any other functional issues with my pancreas.

[Signingfun in reply to rockalley]

I'm glad you finally have a diagnosis and doctors that help you.

Anne

[prime_monkfish]

Hi Everyone,

I am new to this forum. I have CP but it only flares up now and again (I am lucky) so most of the time I go about my business pretending everything is fine (although it's always there at the back of my mind). When I do have a flare up, like I am now, I always wish I had other people in the same boat I could talk to about it. So here I am.

In answer to the question, I took a long time to get here. I had my first attack of acute pancreatitis way back in 2007. It was a few days after my wife's 30th birthday after what was a fairly heavy night on the alcohol front (I miss my naivety in this regard). I found myself in hospital being advised to stop drinking, which I did from that day onwards. I thought that would be the end of it all. I'd quit drinking, right? I even took up running, a hobby which I have since grown to love. Surely that would be it.

Sadly, that was not the end of the story. I kept having attacks, two or three a year to be precise, and had a nagging feeling that I had pancreatitis (Dr Google never fails and I have always been good at catastrophising). I kept going to my GP and was met with casual indifference to put it mildly. One even lectured me on the dangers of alcohol despite my giving it up! Thanks for that, very helpful. He'll be telling me not to smoke next.

Wrong diagnosis, followed wrong diagnosis. I thought I had IBS at one point but the medication neither stopped attacks or improved my bowel movements. It all came to a head in 2019 when I had a terrible attack and went to the GP to find out what was going on. Once again I was going down the IBS route in spite of a high serum lipase result (I used to work in Clinical Biochemistry lab, a blessing and a curse). I ended up demanding a referral to a gastroenterologist and the rest is history.

The last 4 years or so have been hit and miss as you might expect. The enzyme supplements and PPI inhibitors have reduced both the severity and frequency of attacks but I still have them. I always find that they strike either when I least expect them, or when I have lulled myself into a false sense of security that I am in control. 2023 was a good year on the whole. I did two half marathons (getting a personal best in one), only had a mild attack in March, dealt with my health anxiety via therapy, went on a dream holiday and progressed at work. Just when I think all is well and I have got it licked, I have spent the entirety of the Xmas period in pain. Not intense pain, but dull and irritating pain that makes me afraid to eat in case it gets worse. I detest this illness with every fibre of my being. Weirdly I wouldn't be where I am today without it, but it has also taken so much from me as well. I'm at the stage now where I just want the big stone blocking my pancreatic duct out so I can smash it with a hammer.

All I can say is thanks for having this forum as at least I know I am not alone!

[Jackie1947 in reply to prime_monkfish]

Welcome to the group. Just read your story. I was diagnosed 10 months ago. No enzymes sadly as I'm intolerant to Pork. Seeing the consultant next week for colonoscopy report. I might have microscopic colitis as I have rheumatoid arthritis. I'm glad we have this group as no one I know really gets it. I have support but as I don't know how or why I got pancreatitis I'm as much in the dark as them. Must admit I'm scared. Keep up doing what you're doing and hope the kranky panky behaves

[Signingfun in reply to prime_monkfish]

What a relief you don't have to deal with pancreas pain and nausea daily, but yikes! Never knowing when the next attack will come... Sounds like you're doing great living your life! Even though my life is limited, I try to do the same thing. On a good day, I do a little more. On a difficult day I rest and remember tomorrow is another day. Welcome to the group.

Anne

[Susaberry in reply to prime_monkfish]

You’re not alone here. I’m glad you’re here because most people don’t understand. CP. They don’t believe how bad it really is. I’ve lost touch with many supposed friends because I can’t do the things I used to. It is scary because one never knows what food will set off pain or a flare. Welcome to our group!

Nora

[Signingfun]

Until recently, I thought my pancreas issues began at age 46 with a catastrophic illness. Now I realize my pancreas issues began much earlier. At age 33, I was having trouble digesting my food. I went to one doctor who decided I was gluten intolerant. I went on a gluten free diet and became worse. He did a Comprehensive Digestive Stool Analysis that showed a malabsorption of short chain fatty acids that may result from pancreatic insufficiency. The doctor assumed I wasn't following the gluten free diet strictly enough and never followed up on other possible causes.

At age 34, I became frustrated since he wouldn't listen and changed doctors. My new doctor decided I must have IBS. I discovered my symptoms were worse when I ate fatty foods. So, I just avoided fatty foods and stopped asking doctors about my digestion issues. About that time my blood sugar started dropping quickly when I walked or was tired. At one point I even passed out while driving, because my blood sugar dropped so quickly.

So, I struggled for years, trying to avoid foods that caused diarrhea and balancing blood sugar with snacks. Until I was 46 years old. One day in December, I went to work as usual. I started having a backache that afternoon. As the day progressed the pain became worse and worse. Nothing I did relieved the pain. At 10:00 that night, I began vomiting. I woke up my husband to take me to the ER. The children at school had been getting the flu, so I thought I'd caught the flu from them. I remember walking into the ER. I was in so much pain I couldn't sit in a chair. The last thing I remember is laying on the floor in the ER. In 3 days, I was in ICU on a vent with multiple organ failure. A medical coma was induced and later in December a trach was placed, because I was still unable to breath on my own. I was diagnosed with necrotizing pancreatitis with pseudo cyst and reoccurring sepsis. At the end of January after I went septic again, my doctors decided I would not recover without surgical intervention. The surgeon performed four back-to-back surgeries to debride my pancreas, remove the infection from my abdomen and take out my gallbladder. Gallstones from my gallbladder had blocked the duct shared by the pancreas. The pancreatic fluid had no place to go, so the fluid backed up and started digesting my pancreas. I woke up from the coma some time in March. All of my muscles had atrophied, I spent the next three months in rehab, learning to move again.

Unfortunately, my pancreas healed with complications. I spent the next year with a surgical drain and multiple hospital admissions with acute pancreatitis. One year later, I had my last surgery, a distal pancreatectomy with splenectomy. A month after the surgery I became an insulin dependent Type 3c diabetic.

I'm happy to say that was 12 years ago. Some time during that last year, I was diagnosed with chronic pancreatitis. Now there is no doubt that I have pancreas issues. Even if I had been diagnosed earlier, I'm not sure the doctors would have known enough to prevent the catastrophic illness.

Anne

[prime_monkfish in reply to Signingfun]

Sorry to hear that and thanks for your kind words above. Question; what is your diet like as a type 3 and someone with CP. I have been told I am pre-diabetic so I want to know what sort of a diet is in the post and how it is best managed. Thanks!

[Signingfun in reply to prime_monkfish]

What to eat? - is a complex question. My GI referred me to a GI dietician. I have several food allergies/sensitivities so I can't eat/drink corn, blueberries, milk, red peppers, lemons, oranges, ... to name a few. Also, I have trouble digesting raw veggies. Then some veggies are just too difficult to eat even cooked, example broccoli. I don't eat fried foods because of the fat, but as long as I take Creon, I tolerate some fat - so I'm not as strict as others with CP. Then there is being a type 3c insulin dependent diabetic... not only does my pancreas not make insulin (to keep my blood sugar down), but it doesn't make glucagon either (to keep my blood sugar up). I've noticed often as soon as I stand up my blood sugar starts to drop. The more active I am, the quicker my blood sugar drops. So, I have to balance carbs and protein to keep my blood sugar up. The carbs raise my blood sugar, and the protein stabilizes my blood sugar. When my blood sugar drops, I often have to drink or eat some kind of carb to stop the drop or get my blood sugar back up. It's a balancing act. It's been a trial-and-error situation to figure out what I can eat.

That's the long answer to your question. The short answer is everyone is different, so you have to figure out what will work for you. Find a dietician that works with GI patients or cancer patients. Work with the dietician to figure out what is a good diet for you. Some dieticians are more helpful than others, search for one that understands your situation.

Anne

[Susaberry in reply to Signingfun]

Oh Anne, how horrid! I am so sorry you went through all of this. I’m happy you survived! May I ask how you deal with the c diabetes?

[Susaberry in reply to Signingfun]

God bless you. You’ve been through all of this and not only survived, you’re feeling well.

[TiffanysPancreas]

Hi Skye, my story is a mess. I had one attack that was mild and ended up in the hospital for four days for a bunch of test. MRCP showed dilated bile duct but when I had EUS done my GI said the duct was not dilated and that I had scar tissue on my pancreas and that means I have CP. I then had some autoimmune blood work done and was told I had elevated IgG 4 and that I had autoimmune pancreatitis and was put on prednisone. My pain has not gone away in months (not even after 1 month on 40mg of prednisone). My Dr isn't very responsive to any questions I have so I decided to get a second opinion... My hope was that the new Dr would agree with the first but he did NOT. He thinks that an elevated IgG4 is not the only thing to go off of and that I need to wean off prednisone and have MRCP and EUS repeated. I'm lost, stressed out and terrified.

[Susaberry in reply to TiffanysPancreas]

Will you keep us posted about how you’re doing with this new doctor?

[TiffanysPancreas in reply to Susaberry]

I had the MRCP which showed small cyst on liver and pancreas and some fluid up higher (chest). Dr told me to wait for EUS on 3/5. Prayers Please

[Susaberry in reply to TiffanysPancreas]

Dear Lord, You are the only healer. You are all love and mercy. Please let Tiffany’s cyst be benign. Guide the hands of the doctor and medical staff as they attend to her cyst. In Your Glorious Name, we pray

[Briana1]

I was diagnosed with chronic pancreatitis out of the blue. I was having a really bad year on top of bad 10 years with multiple open abdominal surgeries due to 5 drs misdiagnosis and I almost died. So fast forward I was having severe pain again and my GI was leaving. I ended up in the hospital with pain that would not go away And it took them awhile to get rid of the pain. They did multiple scans and nurse advised I was going to stay and I had a resident come in and say ok your go to go. It was really odd she didn’t even look over the multiple scans I took and it hurt so bad. She discharge me. So approx 2 months later I went to the hospital system to see what I was diagnosed with because the resident didn’t tell me. I found out I had gallbladder attacks and inflammation and it was infected. So I contacted my internal med dr and he was saying you need surgery now so I contacted my trauma surgeon and had me go to office and she said they at hospital should have taken this out not discharged you. She said she would yell at who ever discharged me. So she scheduled my urgent surgery for 5 days. After that surgery she found out I had acute on chronic gallbladder attacks. My gallbladder some out and I started to feel better so I thought. I started getting nausea and starting having severe pain again. My gi doc had left so they advised me even with the pain I would need to wait 6-8 months for new appointment. I called everyday and got in and dr found out I had elevated liver levels very high. She called me next day and said I would need to see liver dr for surgery. I had a blocked gallstone. I had ercp / EUS and dr said gallstone was pretty big but I got lucky he removed it and I didn’t need a stent. So a few days later I was feeling bad Again. I went to pain dr and he said you have acute pancreatitis. So I went back to Liver dr and he said you have chronic pancreatitis. I was like not acute he said no. You have been misdiagnosed for a few years and now you need creon and contact me back if the creon isn’t working. So that’s how I was diagnosed with chronic pancreatitis. I’m sorry it’s so long.

Since then my lover dr left so now I’m trying to figure out the new dr.

My chronic pancreatitis seems to be getting worse. So will need a new ercp and eus with colonoscopy so will schedule one soon.