Pancreatitis Externally-Led PFDD Meeting – Acute & Chronic Pancreatitis (Adult Panel)

we're going to be diving into issues of adult patient perspective on living with pancreatitis and we're gonna kick that off with a panel discussion on this panel we have June adriana eric and hillary who are going to be sharing both their experiences and preferences for treatment and i'll ask Jane to get us started to them good morning everyone as you just heard my name is Jane Holt and I'm a patient with chronic pancreatitis as most of you know our journey our story really starts with a diagnosis the beginning is more of a journey my journey began in early January 1988 I was at home asleep my husband and four children were in the house with me I woke up in the middle of the night and excruciating pain it felt as though my insides were exploding I knew immediately there was something terribly wrong and I needed to go to the hospital I had to drive myself and leave my husband at home with our younger children there was a classic New England snowstorm going on but luckily the hospital was was not very far away after blood work and an ultrasound I was diagnosed with possible gall stones they gave me heavy pain medication set me up for an appointment the surgeon and sent me home now remember I was alone it was 4 a.m. in the morning and it was snowing heavily they let me go out and drive my car home but luckily I made it home safely ten days later my gallbladder was removed things were different then and I stayed overnight in the hospital the next morning the surgeon came to visit me I remember so clearly telling him that I had some pain from the surgery but the original pain was still there many of us had had our goal bladder removed in the pain returns I went back to the surgeon two weeks later still in pain he prescribes statins and suggested I follow up with my GP I did this for several months but continued to have the pain but I was pretty lucky I lived in Boston I had friends that knew people in the in the best hospitals and I was able to get an appointment with a gas enter ologists @bi Deaconess Hospital in Boston in October of 1988 after doing a medical history and blood work my doctor said he thought I had pancreatitis I had an ERCP that confirmed this diagnosis finally I had a cause for the pain and it only took several months to be diagnosed instead of years for some of the patients in November I had major surgery to open the ducts to my pancreas in the journey continued in the very beginning my major symptoms were pain and nausea I was always tired my children were five nine and I had twins at were 11 they were my life and I still tried to do everything for them but it became very difficult the surgery held for a few months but the team returned there was no treatment for pancreatitis when the pain became intolerable I had to be hospitalized I would be NPO and put on IV fluids and heavy pain medication early on I couldn't go home until I could eat solid food I was hospitalized at least four times a year and sometimes more there was one year where I spent the entire month of June in the hospital every time I advanced to food the excruciating pain would return my youngest son spent a whole day in the hospital visiting me because it was his birthday we went downstairs for lunch in the cafeteria a trip to the gift store after school the family came in and we had a birthday party with birthday cake it totally exhausted me but I had to be with my son on his birthday my symptoms would have proved after hospitalizations my pain level was sometimes be as low as three I stayed on my very low-fat diet I never drank alcohol and I took my enzymes I never cheated because it wasn't worth it I learned very early that if I ate too much fat within 45 minutes to an hour I would be in pain I had nausea medication that could take when I was vomiting that helps sometimes I was always hospitalized in the fall and I never quite figured out why at first I thought it was the stress of getting the kids back to school and back to a regular schedule after a very relaxing summer but now I realize my my attacks had nothing to do with stress this day my pancreas always flares in the fall as time went on I was hospitalized less the surgeons put in imports so I could have TP at home to begin with I had bigger IV pole at home it would take ten hours every night to infuse the TPN I have pictures of Christmas morning with me and my pole enjoying the gifts that Santa Claus brought the children later I was able to use a backpack which made me much more mobile the kids were getting older so it meant that I could go to school plays and concerts and sporting events hooked up to my TPN then I had problems with the port I developed blood clots and then one time when I was in the hospital I developed sepsis which was from an infection in the line the pork was removed and after that when I went home I had to have a PICC line luckily I've been off TPN for about ten years I've never used my pain medication on a regular basis it was only when I had flare-ups but can but can go for long periods of time when I don't need it I can always feel my pancreas I always have a mild pain at least I can feel it always right here my times a very pain have been less in the last six years and I've been hospitalized less I've had a few ER cps many mr cps cat-scans ultra thousands and thousands and thousands of blood tests I've traveled to Mayo Clinic Lahey Clinic George Washington Hospital for second opinions my doctors has brought my records to many medical meetings for input from other physicians over the last 32 years I've done everything I can to try to fix this disease or at least find out more about it for most patients for most patients treatments haven't changed it's now even getting harder to get one of the things that can help the most which is pain medication I hope this meeting is the beginning of a change we can't ignore patients like me we have to do something to make a difference for all of our patients [Applause] good morning my name is adriana la mascota I'm a 43 year old married woman from Indianapolis Indiana my struggle with chronic pancreatitis started in 2015 I had recently relocated to Indianapolis to take a new job as a chief marketing officer and it just started to date a man that would later become my husband to see I was excited about the future was an understatement I was in a new city with a new job a new relationship at a new home and I was just doing it all and then I took a sip of a water nothing fancy like Pellegrino just some tap water and I doubled over until the worst pain of my life my assistant came running into my office and immediately called the emergency room to have me taken over they initially thought it was my gallbladder so that was removed they were wrong it was an acute pancreatitis attack that cleared up and I went back to work two weeks later it happened again only this time it was a sip of coffee back to the ER and back into the hospital I was admitted this time for three weeks forget dinner and a movie our new dates were to the ER and our movie nights were bedside as I laid in the hospital and learned about lipase amylase and feeding tubes between 2015 and 2016 I underwent 17 procedures to stop the pain calm the nausea provide organ rest and help diagnose why my pancreas has decided to flare-up on a regular basis I was diagnosed with chronic pancreatitis and pancreatic divisum and was living on and off feeding tubes we tried as many variations of medications possible and I'd learned how to live on creon a digestive enzyme that can cost a small fortune and this time I spent a total of six months in the hospital lost my new job my new home and my livelihood I regularly lived on strong narcotics for the pain my now fiancé father passed away unexpectedly in November of 2016 we flew to the remote part of Nebraska for the funeral and halfway through the funeral I had to find a quiet corner a severe attack came on and I was crumbling into a doubled over pain on the floor I was in a ball whimpering and I thought why now why when he needs me most is my body failing me we called my doctors and they asked how fast I could get to a hospital the nearest hospital was two hours away and they didn't even have an MRI machine the next morning we packed up and flew to Chicago where my new medical team was and I was admitted to the University of Chicago Medical Center two days later I was told I had to have the Whipple procedure or I would die I asked how long I had to make the decision and they told me they had surgery date available on December 15th they released me to spend Thanksgiving with my family and on December 15th I went into surgery for nine hours they removed half my pancreas just over half my stomach most of my small intestine and my bile duct I spent three weeks in the hospital with infections complications and was released home with three drains and a wound vac it took me 12 months to recover from the Whipple in those 12 months I was on over 20 medications daily and back on a feeding tube I had cared for 24/7 for four months as I couldn't bathe dress or feed myself and I was wheelchair bound it was painful humiliating and disabling and for some reason the Whipple wasn't taking I was still getting flares with debilitating pain awful nausea and vomiting and more long stays in the hospital with nothing but fluids to allow for Oregon rest I'd lost my career many of my friends and I was down to 86 pounds by the grace room above my fiancee stood by me and we were married he spent every night that I was hospitalized next to me sleeping eating and bathing in the hospital and being my best advocate by 2019 I'd had 16 ER cps which many CP patients have one or two and my pancreatic specialist said I was no longer a viable candidate for additional endoscopic procedures my pancreas had a stone a full blockage in the duct and I had a hernia I was taking our products four times a day three types of nausea medicine medications and spending most of my days in bed things had to change November 14th of 2019 I had a total pancreatectomy auto islet transplant surgery during a 14-hour surgery they removed my pancreas harvested islet cells which produce insulin in your body and transplanted them into my liver this highly skilled surgery was done with five surgical teams and was my last option I came out of surgery and was in ICU for three days and then on a transplant four for four days seven days after surgery I was released from the hospital I'm now 90 days out from surgery and pain free and workout four days a week and I'm off all narcotics so Wednesday life is perfect but in my mind it's as close as it can be and that said I'm an insulin dependent diabetic I fight some low sugars and was almost hospitalized once for that I still take crayon for digestion and I'm living on nausea meds four times a day but I have my life back and I'm looking forward to working again enjoying real dates with my husband outside of the hospital traveling and spending time with my family and I would say that this disease can rob you of your entire life but with the right medications and care you can absolutely get it back good morning my name is Eric golden I'm 51 years old and live in Santa Monica California with my wife and three children I was diagnosed with chronic pancreatitis in 2012 after becoming gravely ill essentially becoming bedridden for long stretches and after being misdiagnosed with diverticulitis for almost five years to give you some perspective before my symptoms became unbearable I had essentially no patience for being sick I once almost went six years without a sick day at work and simply pushed through the illnesses that would send most people home it is impossible to do so with chronic pancreatitis through genetic testing I learned I have two CFTR mutations and one CA SR mutation that my doctors believe the primary cause of the disease I never smoked I was not a heavy drinker and I've had basically zero alcohol since by diagnosis but I encounter people all the time including physicians who assume that people with this disease must be alcoholics I consider myself one of the lucky ones with this disease I have a wonderful supportive family I'm able to be well informed serving on the board of several nonprofits involved with pancreatic disease I am rarely hospitalized many people with its disease including many you will hear from today have it much worse but I want to tell you what being one of the lucky ones means with chronic pancreatitis I'm in pain virtually every day at its worst which is several times a week it is simply the most intense pain you have ever experienced the best analogy is feeling as if acid has been poured into your intestines or you've been stabbed by a flaming hot knife I've had severe shoulder dislocations broken bones and plenty of other painful mishaps and none of them come close to this pain you cannot fall asleep in that much pain and getting to sleep often takes hours and a combination of pain medication and sleep aids fatigue affects me nearly every day for months at a time I feel on that maybe fifty percent or less of my old energy level affecting nearly all aspects of my daily life well I'm too stubborn to stop working many days I fight to make it to the end of the workday when I get home often I am done in bed and not able to be the parent or husband I would like to be when you feel this way for a long time is difficult not to experience at least some hopelessness and depression the flare-ups are the worst parts at those points I am NOT at 50% I am at 5% much worse than say having the flu I'm drained of all energy nauseous weak bedridden barely able to function in horrible pain and unable eat any solid food for up to five days at a time if you had not experienced this before you would take yourself to the emergency room right away since you feel that your body is simply shutting down sometimes these flare-ups are months apart but other times they are weeks apart it takes up to two weeks to recover from a flare-up so that means being debilitated for large ports parts of your life the things that can cause a flare-up include a single inadvertent high-fat meal intense exercise stress working too hard travel or sometimes there is no discernible cause if you if you do not constantly practice very good self-care you can be very sick most at much of the time and even with constant vigilance you suffer almost daily for years I was on daily oxycodone well I tried constantly to manage my dose it increased over time just to have the same effectiveness this fall I decided to stop daily opioid use with the help of the stand for pain clinic I reduced my dose from 15 milligrams to zero over the course of 75 days this was exceedingly challenging and I'm concerned whether most people could do this without very serious help I will say that it would be dangerous and cruel for physicians to cut off patients without a very gradual taper but I hear about this all the time in the pancreatitis community in some ways I feel better without opioids my energy level seems higher and I have had fewer flare-ups though I cannot say whether this is causation or coincidence but the medication I've been giving as a substitute including gabapentin and clonidine rarely comes close to stopping the pain and many nights I'm in too much pain to fall asleep without a sleep aid like ambien because of this opioids remain an essential daily need from many patients to things that have been effective for me not to sound like a stereotypical California have been meditation and cannabis for cannabis I take equal parts CBD and THC I've meditated seriously for two years and while it does not reduce symptoms it can allow you to approach your condition with equanimity rather than hopelessness cannabis for me does not reduce the pain but makes it much easier to bear I would urge this body to give to take cannabis very seriously as a treatment for conditions like this and to give very serious consideration to newer treatments like psilocybin which I know from clinical trials has helped patients with terminal cancer cope with depression and hopelessness but I want to stress that none of this is enough right now this is a degenerative disease that will get worse with dangerous complications not all of which are well understood for example a laparoscopic procedure found extensive adhesions in my abdomen and one of the nonprofit's I work with Mission cure subsequently learned that a large proportion of patients receiving the TP IAT procedure also have adhesions presumably from the constant inflammation I believe these adhesions exacerbate digestive problems for me since they can contort or constrict my intestines an in terms of life impact this disease can be devastating I cannot imagine how patients with more severe pancreatitis are able to make it through the day and I am heartbroken to think that any child should have to go through such intense pain and suffering but as you will hear from the next panel many of them do it is essential and an effective treatment be found for this debilitating costly disease I thank the FDA for its interest and attention and am available to provide any additional information that would be helpful good morning my name is Hilary Mendelsohn and I'm 54 years old I'm a Los Angeles native I have four kids three in college and one recent graduate and I'm a very happy newlywed I was diagnosed with pancreatic cancer in February of 2002 at the age of 36 I had been experiencing a dull persistent ache in the middle of my back being caused by a large tumor on the head of my pancreas I had a Whipple procedure 10 days after diagnosis the surgery was difficult and only three of four margins were clear one still showed cancer cells post-surgery I had complications and infections which were supposed to take my life after several months of hospitalization home nursing and the challenge of reintegrating solid food I began to try and regain my strength and 92 pounds two small children and a marriage ending I was a daughter a single parent a breadwinner an entrepreneur and a cancer survivor when I was diagnosed my doctor gave me the odds 60 to 90 days without surgery and best case 10 to 24 months with surgery based upon the type of my cancer and the size of my tumor no matter the odds or the facts I was determined to be the one to survive I had too much to live for but my journey wouldn't be an easy one my motto became whatever it takes I began to gain weight slowly but I now had new adjustments I had dietary restrictions due to my streamlined digestive system and as I would soon learn if I ate something that didn't work it wasn't just a stomach ache but acute pancreatitis would ensue over the last 16 years I've had eight surgeries related to my pancreas seen doctors all over the country as well as in Canada and Germany and endured more pain than anyone should have to know but I have lived each day to the fullest and made the most of my good days and figured out how to reduce my bad days and even figured out how to better endure those bad days when I would ask medical professionals about pancreatitis they would always discuss it related to alcoholism smoking obesity or diabetes as a competitive gymnast from the age of seven through college I was never a drinker never smoked cigarettes or used drugs never overweight lived a clean healthy life and had no family history of pancreatic cancer or pancreatitis the first attack of acute pancreatitis I thought I was having a heart attack and went to the emergency room no one had told me this was a potential side effect of pancreatic cancer I was hospitalized and put on morphine drip and NPO for a week after experiencing episodes of acute pancreatitis most medical professionals I encountered assumed it was alcohol-related before I told them about my medical history it is so frustrating to be admitted to a hospital and have most assumed that I'm there with pancreatitis because of my own the consequence of my own hard living and even when they do know the reason that I'm afflicted with this painful disruptive and destructive condition many tell me there is very little I can do I sometimes wish they could feel the pain just for a brief moment so at least empathy could enter the equation acute pancreatitis interrupts makes you accommodate and changes day to day life it sets parameters on your life and affects those around you when you combine that with being a pancreatic cancer survivor things get even more complicated Travel is part of my work and I have to figure out how to have what I need when I'm on the road a restrictive diet means I go to the market so I have things I know I can eat the hotel room I stay in must have a bathtub I need to make sure have a surplus of medications that I need which stay with me in my back pack at all times and never in checked luggage I'm traveling alone driving hundreds of miles a day so I must be self aware of how I'm feeling at all times so that I can be safe and sensible should I feel an episode of acute pancreatitis coming on I've learned to deal with the last decade of acute pancreatitis episodes on my own without pain medication IVs or hospitals over the past few years my with my streamlined digestive system my liver is now overworked and underpaid and has begun to show signs of atrophy since then I've made further accommodations knowing that there isn't someone like me who's had a liver transplant and trying to protect what I have I have had many doctors and medical professionals tell me variations of I can't help you with your issue with your issues but frankly you're just lucky to a lot been alive this long quality of life is the most important thing to me knowing I must accommodate to so many things others don't have to think about is challenging enough dealing with the pain of acute pancreatitis should be the most difficult part not negotiating with doctors and medical professionals to help me and not dismiss me luck is the smallest factor of my existence in the face of difficult odds I have fought to be here endured much pain and conquered fear I have looked for answers where others said there were none I have listened to my body learned about physiology and come up with my own set of answers truths tricks and methods knowing quality of life is the most paramount issue even with all of my struggle I'm thankful to have a life to live to that end I'm hopeful and prepared to work towards making sure that more is learned and more can be done other than my beautiful family I hope my legacy is to be part of the change encouraging compassionate care and inspiring innovation in pancreatic studies and helping those afflicted find more daily quality of life Wow it's incredibly brave to get up and speak first in front of everyone so I just would like to ask everyone to join me in another round of applause for the whole panel so now we're going to build on what we just heard from the excellent panel through some intermixed polling questions with audience discussion so you can go ahead and pull out your phones again we're going to ask our patients and caregivers in the room to answer a few questions and then we're going to dig a little deeper with some facilitated dialogue so if we can have our first topic one question so here we'd like to know which of the following pancreatitis related health concerns that you or your child have had recently have had and please check all that apply I should note that for this set of polling questions even if you're here for to represent a pediatric patient we would like you to respond to those at this time these are going to be the polling questions that we'll use for the full group today so which of the following health concerns do you or your child have or have recently had the options are a pain B nausea or lack of appetite C fatigue D abnormal bowel movements e weight loss or malabsorption F bloating G dizziness H diet restrictions I thirst or dehydration J irritability k worry for the future L anxiety or depression or am some other health concern related to your pancreatitis that's not listed on this slide again please check all that apply so I think there might be a question about the percentages is that what it is yes so this is not a proportion tidge of patients and caregivers that are responding it's a percentage of the total responses so what's important is to look at the relative weighting of the different responses it's just the way that the polling system displays it we're able to actually look at the total percentage of everybody for each on the back end but that's a great question so while final results are trickling in it looks like the pancreatitis related health concern that has been experienced most by our participants today is pain closely followed I would say by a cluster of nausea and lack of appetite fatigue abnormal bowel movements and worried for the future however there's quite a bit of experience across every single other health concern perhaps dizzy dizziness being one of the ones that's less frequently experienced and there's a good amount of experience with other health concerns so we'll as we go to the audience discussion definitely want to hear about what those other health concerns are can we go to the second question so here we want you to the previous question we asked about all of the health concerns that you have and it was quite a great burden across many almost ever actually every single one of the ones listed here we want you to pick the top three health concerns that you have your options are a pain B nausea or lack of appetite C fatigue D abnormal bowel movements e weight loss or malabsorption F bloating G Disney dizziness H the diet restrictions I thirst or dehydration J irritability K worry for the future L anxiety or depression or am one of your top three pancreatitis health related concerns is something not listed on this slide so please select your top three so give you just a few more moments to get your responses in it looks like pain is by and large the top top 3 pancreatitis related health concern that those represented today have a little bit distant behind that are nausea and lack of appetite worry for the future and fatigue however individuals did pick every other response option except for dizziness not falling in any ones top 3 and again a number of other health concerns that aren't listed on this slide being top 3 so certainly we'll want to hear about those and if we'll do one more polling question at this point so here we've asked about the direct health concerns and now we want to get a sense of what the impacts are on activities in your daily life so what specific activities of daily life are most important to you that you are not able to do when experiencing your pancreatitis please select your top three options are walking exercising participation in sports and activities social interaction and participation attending school or having a job or if some other activity in your daily life that's important to you that you're not able to do because of your pancreatitis so it looks like the top two responses been flipping a little bit have been social interaction and participation and attending school or having a job so we'll definitely want to hear your experiences and what is made it so that you're not able to do those next kind of together or exercising and participating in sports or activities to physical activities more rigorous physical activities but some of you noted a top-three impact is an impact on not being able to even walk and then there's other activities that were listed or that were not listed that you report not being able to do that are a top activity you're not able to do so will want to hear about that so that let's turn it to you in the audience to talk about the direct health concerns related to your pancreatitis and so let's maybe start we heard that the top concern is pain following that it was nausea but there were others like fatigue and then we heard while they're not listed explicitly that there's you have attacks and flare ups that happen we heard that from the panel so we'd like to hear about what is maybe your top one or two health concerns and tell us why it is that you view that as a top health concern yes and just remember please say your name hello my name is carolyn bloom and i am 72 years old probably older than anyone up there in the panel I was born although I didn't know it with the pancreas division so from the age of 0 to 22 I was told I had the flu I was nervous I was put on valium in college I had an ulcer but at 22 I was diagnosed in Boston as having pancreatitis so from 22 to 50 I could do my job but I was in the hospital seven times then when I was 47 I had a stent put in by a noted person and the day after the stent went in I was in horrendous pain the noted person had left town and they would not take the stand out so I had to be in pain like having a knife in me for two weeks and after that it turned out that the stent because we're talking about quite a while ago 1997 the stent had slipped and made my deformity even more deform so I became chronic so from the years 19 from the time 1997 to 2000 to 2008 I was in the hospital 250 times I had 62 er CPS which I have since found out was a horrible thing to do you shouldn't have more than two or three and I was in the hospital the average of about eight months out of 12 months a year for thirteen years so I would say that I'm very knowledgeable on this topic and then in I was ready to kill myself actually I was on dilaudid fentanyl ketamine they told me I couldn't have any more er CPS and there was no more pain medicine and so that's when I found the hotline thank God it used to be on yahoo.com it's now on Facebook and I found out the how I went to every major medical center in this country every single one Mass General Johns Hopkins Mayo I won't go into the rest but then I heard about the one place in the country that did do this GP AIT and so in 2008 I had it and it was my only choice even though every institution pooh-poohed it and now every one of the institutions including the doctors in this room today everyone pupu that they said you shouldn't do it it takes Barun mental and you'll become a type 1 diabetic which I am who cares I mean I am here now 12 years later probably the I was told that I and one other person I was told about this are the oldest living survivors of the GP and the EIT and I am probably one of the oldest living survivors of pancreatitis period being that I'm 72 and was born with it so all I can say is that I do if if your pain gets really horrible the TP AIT does stop the pain I have learned the Whipple doesn't stop the pain and some of the Whipple candidates can are not candidates for the GPA I T but some are and so all I can say is thank you to University of Minnesota dr. David Sutherland who created this and dr. Bellin who was part of my team when I had this and I have tried for years to be a spokesperson for this because I don't think anyone's as old as I has gone through what I've gone to but I have not been able to break through but I am happy to talk to anyone because I really unfortunately know a lot yeah so when I have a follow-up question for you so you talked about I think it was age 47 where you know you had the stent and your pancreatitis became chronic could you kind of contrast for us a little bit that you know what was the driving symptoms and frequency of those symptoms before that time versus after the pain when your acute as many people said you get a horrible attack you're in the hospital for two weeks you don't eat anything but you're lucky and ice cube is a filling and young and then you live you live in a very bland fat-free diet but once I became chronic at 47 after the I am again stenting by the way because of mine and I've been told that of course I had my stent in the olden days now that they have made the stenting more probably better but I'm anti stenting because I try to stand one other time the same thing happened but that once your chronic and become as chronic as I did it's excruciating even when I was in the hospital eight months a year I'd go home and I couldn't eat I couldn't get out of bed so then I'd end up back in the hospital eight months a year for thirteen years is a long time in the hospital and I hope I am so happy now that I hear that they are doing this surgery on people as young as five and if only I had been alive in the period because I lived most of my life in excruciating pain anyone have a question or that's it okay thank you so much so who else would like to share about their top symptom or symptoms hi my name is Holly Watson I'm 34 and I have hereditary chronic pancreatitis I was diagnosed when I was 21 I think I had my first attack that I remember that being what this was at about 19 and I was told I was 21 at James Madison University in Harrisonburg Virginia they were like wow I was like I know what it is it's pancreatitis and he's like how do you know that and I was like my whole family has this since they were three years old my cousins my aunts my uncles my sister my mother just I knew and it to me at that moment was a death sentence because nobody knew what to do there we can't help you and I was devastated I mean what do I do with that information of 21 they tell you don't drink alcohol don't eat large meals don't get stressed out like you just named my life in a nutshell like I don't have anyone to relate to I have no one to talk to the pain was ongoing for so long and it started in my back I thought I had like kidney problems and I kept going for months and months trying to get them to fix my kidneys and there was nothing there and it came to a head and I drove myself to the hospital too and now I am 21 weeks pregnant with my third son and all I can think of is my future or lack thereof it's to me still the only option I have is the TPA IT potentially I mean if you're a candidate which I would hope I am but I haven't gone through that process and that just sounds overwhelming to me so anybody who has done that as a warrior my opinion good for you it is terrifying but it is life-saving I'm not there yet I think God every second of every day I'm not in pain like some of them have said a sip of water will put you into the hospital how terrible is that what am I supposed to do there I went 36 weeks pregnant with my last pregnancy and the ER admitting doctor was like oh you're pancreatitis and you're pregnant I don't know what to do with you I won't touch you and literally walked out of the room great and that hopelessness is one of my biggest symptoms pain but everyone's pain is different I bring it up to gie doctors I get when I tell them dehydration is a big factor if I get dehydrated even the slightest bit it did flare it's immediately and he was like well that's interesting you've never heard that before that's so scary I started going to Hopkins I started seeing a specialist my hope for that is somebody I won't have to go to the ER we're doctors I don't understand it and I will have someone who has my back but that's you know that's a complicated relationship in and of itself the pain is so scary to miss out on your kids lives they have three four children up there and I'm on my third and I'll do my kids have this gene am i getting be around for their birthday parties am I gonna miss out on life that's so scary to me quality of life I want to be there for my kids that's my number one goal if I'm in pain in a hospital or in bed I'm missing it and what's the point so my future I need to have hope for the future treating the symptoms it's not enough the symptoms have long gone my my chance for pancreatic cancer is so sky-high it's more a chance of win will it happen not if unless I get this radical surgery it's radical I mean you tell some doctors that you don't have a pancreas Saylor you can't live without a pancreas well that's scary too yes you can I've seen it but I can't work with you if that's what you think or type 3 diabetes is what they call it well that doesn't exist well then I don't know what to call it but if I don't have a pancreas to counter act the blood sugar highs and the pendulum swing of the lows what do you want to call it name it something else but that's scary especially in the middle of the night who's I mean if you're sleeping all of these things are so scary to me and it has been in my genes is it in my kids DNA I need hope for the future for them my history is set I'm gonna get this TPA ID I just don't know when when someone can talk me into it or my pain is on a daily basis and it is worth it you want to cut it out yourself at that point so my hope is to be here and to do things like this that we can start to get a dialogue going of the future hope for the generations for the kids for the next panel for my kids not necessarily for me I don't care so much about myself as much as I care about the future so thank you thank you I do have a question for ya so I think you were so articulate about your worries for the future just to give us a little bit of grounding in your current experience the one thing that you was noteworthy was you know you kind of had the onset of symptoms to the degree you knew was the pancreatitis at age 19 you talked about the thing that maybe is the most common experience is flaring due to dehydration you know how often does that occur and how debilitating is that when you do experience it now I haven't had a luckily a flare since I was 36 weeks pregnant about almost two years ago and I'm one who luckily I kind of eat whatever I want I take that I'm going to eat all the things that I can now before I start hurting because the sip of water could do it or it could be a cheeseburger I don't know or it could be the dehydration but the symptoms and I only knew this was what it was because my family members had had it I didn't oh really the symptom since mine started in my back and nobody else had had that can you repeat your question one more time make sure I'm gonna answer it all the way just how often you know since age 19 have you had those types of I I've been to the hospital over 20 times but I've had more flares than that but knowing what it is and then going to the hospital it's kind of like you got to be so bad off to go to the hospital and try to explain yourself I'm not an alcoholic I'm not a drug seeker is it really worth it so I've probably in all of those years probably had over 45 flares look onto the hospital about 20 times you self-medicate ibuprofen if you can if you have something else but opioids caused me to have pancreatitis a lot of the medications they give me in the hospital have it's the warning sign it's in the it's in the directions can cause pancreatitis yet they give it to you and so that's scary too so as part of me just wants to stay at home with all that if you can but it's more the dehydration I need an IV that's why I go yeah thank you so much for Shinji Olli others step over here just a second sure my name is Linda Martin and I'm the mother of an adult daughter with chronic pancreatitis and I'm going to speak on behalf of her she had hoped to be here but was not feeling well and decided not to get on a plane and make the trip so I'll tell her story best I can it started really when she was diagnosed with chronic pancreatitis in 2015 she had a big job with an international company had a whole team of software developers and engineers working for her around the world was doing great and her career clients loved her and she loved her job was she sick more often than most people yes in retrospect she had had a lot of stomach issues Amy had been sick since a little girl we just all in the family said oh that's just a me being Amy every time there was a big event every time there was a big school event whether it was Christmas some other big family event or holiday excitement stress change of routine all brought on what we called Amy's sensitive stomach and little do we know till 2015 that there was actually a name for this sensitive stomach that was accompanied by pain we I took her to the doctor over and over again and it was constipation acid stomach sensitive stomach she just didn't want to go to school which was my favorite excuse and I would do the oh you don't have a fever go to school and I really underestimated the amount of pain and suffering that she was in as a child so fast forward to 2015 and the symptoms got remarkably worse very quickly she was sicker and sicker all the time started missing more and more work she could cover up for it for a while because she worked remotely from her house and was on online with her team but she was offered a big promotion to go to Toronto and head up be a vice president of the company she had to turn it down and surely they said you know what you seem to be missing a lot of work we're gonna move on without you and from that day on she has not been able to be gainfully employed continued to get sicker and sicker over the next few months lost about 70 pounds my older daughter went with her to a doctor's appointment and came back and called me and said mom you have to do something about Amy she is dying before our very eyes and from that point I dropped everything I was doing and we went from hospital to hospital doctor to doctor searching for somebody with answers eventually someone said it's pancreatitis never had heard of pancreatitis like a lot of people didn't exactly know what the pancreas did but we soon learned it was pancreatitis and one of the first visits after hearing the word pancreatitis she was asked have you ever had any alcohol she said well I'm 40 years old so yes I have had some alcohol I've never been a big drinker I don't drink a lot in fact for the last couple of years I haven't had a drink because when I drink it makes me really sick and so nonetheless her medical chart to this day does say alcoholic pancreatitis and so continue to search and search and search in the meantime she was getting sicker and sicker and on top of everything else because of in part because of the extreme and constant inflammation she had numerous cancer biomarkers that were elevated so there was also a search and a lot of fear over does she have liver cancer does she have colon cancer does she have pancreatic cancer she had tested positive for chronic myeloid leukemia so had to go through bone marrow biopsy to rule out that she didn't actually have leukemia eventually and her GI at a very well-known institution said don't worry you're eating a low-fat diet you're doing everything you can do there's nothing else we can do for you don't worry your pancreas is actually healing it if you just don't realize it and so by that point she had done off research we had done enough research to learn that chronic pancreatitis does not heal itself it is impossible to heal itself but little by little she was saying mom I'm not really vomiting very much anymore I'm not vomiting food because I really can't eat food I'm only vomiting bile she because I'm just vomiting stomach Violette's that's no big deal like Amy that is not normal so continued our search and we were very frustrated about finding anyone who knew anything about this disease let alone what to do about it quickly learn there was very little no medications no therapies and about a year later we learned about T P IOT and at that point even though numerous doctors including the one that says she was somehow quietly healing herself said it would be malpractice for anyone to do TP IAT she had only had three stents by that point and had not had chronic pancreatitis long enough to be qualified for TBI t she said thank you very much see you later referred herself to the University of Minnesota where she was evaluated within six weeks had a TP IAT surgery not before one more scare with possible pancreatic cancer with a mess and her pancreas that thankfully turned out to be benign and she went through with the TPI T however not knowing that she had chronic pancreatitis for all those years and what we thought was just these Amy being Amy attacks were actually acute pancreatitis attacks her pancreas was pretty well destroyed by the time she got to TBI T and their work many healthy islets to transplant into the liver although they did the very best they could so he is fully insulin-dependent diabetic similar to the woman who spoke a few minutes ago she would say if she was here that's no big deal being a diabetic is a fully manageable disease and chronic pancreatitis is not sure so that's that's my daughter's story thank you for listening thank you for sharing so dr. asif had talked about first line treatment being enzymes and you know we've heard about some of the more invasive kind of later surgical and other procedures I wanted to get your experience with that enzyme treatment and you could describe how that might have helped or your views on the role that that played in your pancreatitis progression so any views or experiences with enzymes my name is Michele Conroy I'm from Indiana I had my first incident probably in first grade and my daughter hope I hope in first grade we didn't know what it was wasn't diagnosed actually until I was 30 after I'd had her with Creon is for the lipase that I take for three years I was told we're not even going to try to prescribe it because it's too expensive not even given a chance when I was prescribed the insurance I had it was $0 so physicians I think have a worry a concern and they just kind of write it off automatically due to the expense however if I'd had that opportunity my chronic pancreatitis might not have gone to the progression that it has they do help me eat but I have to balance it out with a dehydration effect so it's either be severely die dehydrated and be able to eat or not be able to eat and then be very weak and mounted nourished thank you Eric did you have something to add on that yes I'm not enzyme insufficient so I don't need enzymes for that purpose but I have taken crayon for a number of years and I just wanted a comment that I have not seen any discernible effect on the level of pain I know there was a comment in a talk earlier that it can but it certainly does not help everybody in that respect I started taking the enzymes after the Whipple because I did not have pancreatitis prior to the pancreatic cancer prior to the Whipple I didn't know that it was supposed to help with pancreatitis once I did start getting the acute pancreatitis it didn't change anything thank you so oh we'll take another comment from Holly but also before you say that broaden it to other treatment approaches that maybe we haven't heard a lot about so far again I know a number of come up repeatedly in some of the comments so far but we'll go to Holly and them we'll take this comment over here sure I don't personally take the enzymes my mom just recently started and she was very against this will not have the TPA T she was a smoker for all these years has the gene and all of that but she then was told she wasn't really a candidate because she has COPD and a lot of other issues going on but she was dead set against taking the enzymes dead set it's not gonna do anything for me it's do something I've been doing it she started taking it and has seen major progressions really she has more energy she can digest food she can eat it doesn't run right through her she's seen a gain she's gained five pounds in a week almost I mean it's been really been life-changing for her I personally don't take them amount there yet but and I don't know if you can take them pregnant that's probably something I should look into but yeah it's really helped her a lot Thank You Morgan : caregiver for an 18 year old I think it's Eric talked about good good work with the cannabis and my son has a more of a problem more recently with stones and he actually went through pain for nine months Creon and everything else under the Sun that they could think of to work and for the most part all it did was make him nauseous so we went along and we got him a med mal card and mam made whatever card and the cannabis has worked very well of course that's brought along other potential issues as not a lot of parents in here probably say you want to go get some pot with you son but that's the situation we're in thanks thank you so while we're exploring now treatment approaches and asked you guys to plot your phones again we're gonna do some questions to get an idea of the experience that we have in the room with different treatments all right so I know this is a long list but this is uh because we know you guys have to juggle a lot of different treatment approaches so here please select all of the different things that you're currently doing to help manage the symptoms of pancreatitis note that the next question will be asking you about what you've done in the past but here we're asking you about what you are currently doing these are good thank you for the the clarifying question again so anytime we have a opportunity to have you provide more than one response we're seeing the percentage of responses not the percentage of individuals that have that experience so I'm not going to read the whole list here but we have quite a few options of different things that you have done to help manage your symptoms of pancreatitis many that we started to hear about but some others that we haven't heard about quite yet so it looks like the leading current approaches to treatment include non opioid pain meds as well as diet and dietary changes we've heard a little bit about those so far we just talked about digestive enzymes haven't heard much about nausea medication and whether that is at all helpful in managing day-to-day nausea symptoms after that we hear about opioids and narcotics another common treatment approach that we've heard about but there's quite a bit of experience in other areas different lifestyle changes would be very interested if you have one of those to share for you to think about raising your hand as well as hydration and heating or cooling I think maybe those are some good ones for us to talk about here in just a minute but again a lot of experience with almost every single one here as well as some others so I wanted to put this up to get you thinking about sharing some of the maybe less common treatment approaches or maybe ones that just aren't as top of mind did we have a comment on hydration or heating a coin let's just go down the line real quick we'll start with Tina Oh real look so I wanted to make sure one thing that I did many years ago which was part of a research project and it was a mine buddy mind-body program that was run by dr. Benson up at a PID Canas Hospital and it was a six week program and we learned all sorts of things we learned meditation which is very helpful helpful journaling and I remember very clearly going through the whole program we had to respond after each meeting whether it helped her not and saying no it didn't help me I'm just same as I always it but the reality is it helped me tremendously because I realized for soon afterwards which was after the time I was reporting that it really made a difference when I had a real flare if I could you know bring myself back to that really peaceful place or if I'm having an MRI or if I'm having a procedure it helps me tremendously and I see other people doing journaling which is very effective it doesn't cure the problem but it helps me deal with it better and I thought was very helpful I just wanted to talk to a couple of different therapies around the nausea medications I take compazine three times a day and then I take a nausea medication that's for cancer patients called amend or app repentant it's designed to be taken twice a month I take it every day so 30 times a month so they don't really know the long-term effects of that I don't know how great that is but it works very well for me and so if you struggle with nausea and the regular kind of zofran Fenig Rennes don't work for you I would recommend talking about that around heating and cooling how was that regimen of nausea meds working it works great so I live on that that regimen of nausea medication and we've tried to cut back the compazine to twice a day have to have it three times a day we tried to go after the TP AIT we tried to take me off of the amend and that did not work so um and when you say great its that are you still experience knowledge at all no I don't experience any nausea okay no and very rarely do I vomit anymore now without those medications I would be back on a feeding tube sure so with those medications I'm able to eat on my own without them I live on a feeding tube so they enable me to function and eat sure for heating and cooling I travel with my heating pad I mean it is my lifeblood because otherwise I'm just too cold to function and around anxiety I do a lot of meditation also even that picture of like being in the MRI machine I do a lot of meditation just to kind of get through things and get through pain and I have a weighted blanket so it's a gravity blanket that really helps me stay calm when I'm having a flare or when I'm having pain or anything like that I've noticed the weighted blanket is actually something that's come in really handy Wow Hilary did you have something to add the bathtub is incredible for me when I start to get a flare of pancreatitis if I there's things that I start have I have started to do ritually when I start to feel that and I have a product called Chell adonia majus it's a homeopathic medication used for indigestion but somehow if if I start to feel the pressure right in my sternum I take that first there's over-the-counter nausea medicine called nausea you can get at any drugstore rather than taking the prescription I take that first I take to those with the cella dénia majus I get in the bathtub sometimes I can stave off a full episode if I do that I can cut it I want to say first for me the most important thing is how I choose to deal with all this mentally if you decide that you're gonna get through this that you need to have a positive attitude to help heal yourself to get through every day to be with those around you and not have this become your life you have to have a framework in your mind of how to deal with it and that's been the most significant part of all of this for me including the cancer so thank you Eric one more point and then we're gonna go to we'll take actually a comment here then we'll go to the next polling question I just want to make one more quick comment about cannabis I live in California where it's fully legal not federally but but state level and and doctors and patients both accept it as a completely legitimate option but I encounter people all the time around the country who kind of just get a little freaked out by it and I want to say it isn't for me it does not reduce the pain but it can easily take me from being in bed feeling like absolute trash to being up and walking around then you just as Hillary was saying it kind of takes away the emotional response to your physical situation from the physical situation so you may actually say to yourself wow I'm really in a just a notable amount of pain but it's not taking you down on a daily basis so I'm happy to talk to anybody who wants to but I think it's something especially compared to opioids considering it's infinitely safer and has fewer side-effects I think it's something that deserves very serious consideration and in addition to that just because of my liver now I can't take any pain medicine nor can I take Advil or any of that so for me I started using cannabis last year and that has helped as well my name is John mahal Czech and just briefly from my history and my first episode of acute pancreatitis in 2006 I was a freshman in college a week before finals when I had my first attack in 2009 it switched over to chronic and then in 2013 I had the total pancreatectomy with autopilot and then just recently in the first week of December growing the adhesions I had a revision surgery to take care of adhesions and some other things and I saw some improvement with that but I was excited to hear about the focus on mental health from the folks in the panel and that's kind of just what I wanted to echo as well throughout all of that I definitely looking back had underlying depression and didn't realize it and that's something I was able to start working with a therapist about two years ago and that has made like I say it doesn't help with the pain it doesn't help with this with the nausea and those kind of things but it definitely helps with management and I'm just excited to hear more focus on the mental health aspects because I feel like there's a stigma associated with that sometimes and patients are reluctant to to talk about it but I definitely think that that needs to be a priority for folks with any chronic illness but definitely with this as well sure and so for you that kind of that type of talk therapy has been able to help a lot with yeah that and it takes us low-dose antidepressant as well but it definitely looking back you know my therapist her favorite line is someone going through all this stuff if you don't have some underlying depression there's probably something else wrong with you that's her line she goes thank you so thank you sharing all right if we can go to the next polling question so here we want to understand a little bit about how your treatment regimen has changed over time so you just told us about what you currently use but we'd like to get a sense of what you've used in the past but no longer use and again please select anything that you've used before but no longer so while results are trickling in it looks like the top medication or treatment that you use in the past but no longer are non opioid pain medicines following that it looks like endoscopic procedures and digestive enzymes followed by opioids or narcotics surgeries and nausea medication although pretty much every other well every other category has been used in the past but not currently like to hear from anyone that has had an experience where you stopped using one of these medications or treatments because it just wasn't working for you and that's why you stopped using that it could be anything on this list it may not be or maybe it was because you weren't sure it was working for you even if it wasn't certain yes come here can we get a microphone just for the webcast sure so my son was on the gabapentin for seem like somewhere between four and seven months and all it was getting him was nauseous and it wasn't relieving the pain so that's how we came upon the medical marijuana suggestion and we switched that out and it obviously worked much better so you you're saying that in that case it was a side effect it was nausea from the medicine from the gaba combined with the it wasn't working to relieve the pain either so there was no upside to it for him sure thank you any other experiences where I see a hand in the back hi I'm Tara I have acute pancreatitis and I used to live in Portland Oregon so I was smoking a lot of cannabis and then my doctor told me that smoking might affect the pancreas as well so I'm just kind of wondering how you guys use treatment if it's in the form of edible or smoking because I was nervous and I removed it from my diet kind of sure and of you are you now taking anything what are you taking for her pain management now I'm a yoga teacher I was doing yoga before I had pancreatitis and I kind of fully grasped on to yoga and more natural ways of healing after I got my first spout of acute pancreatitis that's happened twice now and it was been about four years since my first hospitalization so it's kind of a treatment process but it's mostly digestive enzymes meditation diet restrictions I haven't had a drink in four years and and how frequent are your acute attacks I've only been hospitalized twice but I do have pain outside of going to the hospital the times I was hospitalized was like full-blown I was in there for a week or two on just fluids severe case yeah sure thank you so much for hope did you have something yes I don't know if anyone had an answer to the edible flashes in class really cricket Eric and Hillary can say what forms out I I was using the oils and a vape pen I've since slowed down on that because there's no regulation and I don't want to cause secondary problems until we know more about that I use a pax it's a device that it's it's a technologically it's more advanced than most of the devices and uses flower and edibles is a problem for me because of my digestive system okay so I also I thought that babes was the healthy way to do it but it turns out it's not true there there are tinctures and the only thing you have to be careful of is some of them are alcohol-based which I think folks like us want to avoid even any risk of and but there are ones that are that are suspended in oil with medium chain triglycerides which are supposed to not be as bad for you just to provide a point of information for everybody because I know this is a frequently discussed and poorly understood topic a lot of folks with pancreatic disease and chronic pancreatitis in particular are wondering whether and how and when to use cannabis as a therapeutic aid or to add to the to the treatment that they're receiving niddk our Institute is also interested in this we happen to be sponsoring a workshop this July in Pittsburgh which is entitled pancreatic pain one of our faculty speakers at that workshop is a neurophysiologist from the University of California at Irvine who in fact has studied the the mechanisms of cannabis and how they affect pain responses and pain transmission the difficulty as you realize is just as Eric mentioned the use of cannabis is legal in some states and not legal in other states and that has complicated the scientists ability to gather data about the use of cannabis and the effectiveness of cannabis and we hope that by virtue of holding workshops like the one that's planned in July and other activities that we can actually expand the research into this drug currently only the National Institute of drug abuse NIDA is able to sponsor clinical trials or studies that involve cannabis use but others of us particularly those of us in the digestive disease Division of NIDDK are obviously very interested in this topic because we realize this may be very important for patients that we're concerned about so we're we're pushing the ball down the field so to speak from our end and we're trying to learn more about this through programs such as the workshop that we're gonna put on this summer thank you dr. Anderson so I want to put it out there we have just one more minute for our first session here today of course we'll have time to pick up the discussion and really you know the pediatric experience I think is in some ways a spectrum you know so we'll be able to continue to have this discussion when we come back from break but any other final experiences with treatments that you've had whether you should stop them or are using them currently yes final comment my name is Melinda mahalik fry and I've had chronic pancreatitis for at least five years with a few flare-ups my stories like everybody else is here so some of the things that my doctors have put me on our am trip d'Alene and pant Oprah's all what else is it zofran highest I coming and those sorts of things and so they put me on digestive enzymes as well none of those have been effective for me so when I have like an acute but about I mean you're on the floor you can't get up so the other thing that I'm kind of curious of is there's no medication that seems to keep our pancreas intact like you have calcifications and atrophy that occurs over time and so I don't know if there's ever a possibility of anything like that being developed but but that would be a priority for me though it would be yes it's a great comment thank you

Channel: National Pancreas Foundation

Views: 58,357

Keywords: PFDD, Pancreas, Pancreatitis, the pancreas foundation, national pancreas foundation, NPF, Patient Focused Drug Development, Therapy, Symptoms, Pancreatic Cancer

Id: So6CiCCL-uM

Length: 77min 34sec (4654 seconds)

Published: Fri Mar 06 2020