Pancreatitis Externally-Led PFDD Meeting - Acute & Chronic Pancreatitis (Adult Panel)
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- čas přidán 21. 08. 2024
- The National Pancreas Foundation, the only foundation dedicated to patients who are suffering from all forms of pancreas disease, is holding the first-ever, EL-PFDD meeting on pancreatitis for our pancreatitis community and the U.S. Food and Drug Administration (FDA). Through the EL-PFDD meeting, it will advance the NPF’s mission of providing hope for those suffering from pancreatitis and pancreatic cancer through funding cutting edge research, advocating for new and better therapies, and providing support and education for patients, caregivers, and health care professionals.
Panel 1: Acute and Chronic Pancreatitis - Patient Perspective on the Burdens of the Disease and Current and Future Approaches to Treatments
9:05 - 10:25 AM
Symptoms and Daily Impact | Current and Future Approaches to Treatments
• Presentations by 4 Affected Individuals and Caregivers (20 minutes)
• Moderated Audience Discussion Panel #1 (60 minutes)
One thing that Everyone needs to know Pancreatitis is Exactly Painful!! If you haven’t ever experienced it, please don’t doubt everyone else.
This is so true. It is quite painful and we understand this at the NPF and try to provide helpful insights towards pain management.
Currently diagnosed with EPI, Thank you for doing these panels, you are helping many that are suffering with little support.💙
Makes me cry 😢God bless all of these people who are out here fighting/suffering in the real world and we need more compassionate empathetic staff in hospitals and clinics!
They are shitty to me every time I go to e.r
@@timnave891 I’d like them all to
feel this pain when it hits.
Even for an hour…
See if they still are skeptical then.
You’re not alone. ✊🏻
Thank you. So many think we are making it up. Especially when you fight it at home.
N 9
🤞🏽😖
Thank you. The pain never completely goes away. It's so comforting to know I'm not alone.
Lord help all of these people!!
For the first time in years, I feel a part of a group and not lost. So thankful.
I came across this video by accident and I couldn’t believe I wasn’t alone.
I’ve struggled with pancreatitis for 30 years. My story is very similar to the people who have shared.
The information was very helpful.
When one person said they wish someone could feel this pain for a second so they could understand. I know have cysts in my pancreas. I have been diagnosed with IPMN when I was 31.
I shared this video with all my family members. With hopes they could better understand this condition. I feel that hearing other people’s stories they could better understanding what I go through and not “ here we go again “
I thank all of you for sharing your stories and how you all have found ways to cope with a devastating condition.
Hallo can you talk to me it's important please
Hearing of their testimonies makes me afraid of this disease because I have a problem with Pancreas. God help us all!
I was just diagnosed with acute pancreatitis please pray for me. Had my first hospital stay And was scary but had great nurses
Me too
They miss diagnosed me I don’t have acute pancreatitis I have stage four anal and cervical cancer I ended back in the hospital for another nine days and had to push them to get a colonoscopy they said I have six months to a year to live June 1 and I’ve already passed the six months I’m fighting holistically
@@canyouhandlethetruthwithlj4835how are you now?
Just got diagnosed with this and this video has been so helpful emotionally for me. Now I'm over the shock I want to educate myself on dealing with this disease. The pain is unimaginable. To say the truth of my thinking was how did I get here, where do I go from here and then to ask how one can be alive with living with do much pain. I can say I've taken my ability to eat, drink and go about my day for granted. Simple things like even having a cheat day in maintaining my weight. Now all i see food as is a cause of excruciating pain and not as fuel for my best health. My prayers to all those that have, do and will suffer from this and I pray for full understanding and ability to heal those like myself.
Same here! I totally agree with you!!
I totally sympathise I am scared to even take two small meals a day
I’m so grateful to hear from others who share the same experience as my self, it really motivates me to keep fighting. Because I have been through a lot over the past 8 years. This is only time I am hearing from people with chronic pancreatitis.
All Drs should hear these people!! Especially with the lack of knowledge and the refusal of effective Pain relief and I too have wished the Drs and Nurses should experience some pain for a few hours!!!
I have chronic pancreatitis. I be been to the hospital 5 x in last two weeks. I was in Oct Nov dec. I think I should give up I can't even get up and walk I'm so weak. Ty
I was just diagnosed, and I can relate to everything about the pain. Thank you for sharing your story.
You have no idea how helpful this video is, cannot thank you enough
Antibiotics & anti allergy tablets causing Pancreatitis.
Trust me trust me please .
@@user-ct1zr7ko2n I trust you
Wow have had trouble since I took ozempic for weight loss since then have pain in pancreatic area this so insightful thank you for sharing
I'm a 26 year old alcoholic, I've been to rehab twice now, trying to save my life. December 15th, I woke up with the worst pain of my entire life. Knew I had to go to the hospital right away, after hours of pain medication and crying in a ball on the floor, they diagnosed me with necrotic pancreatitis. I had never, ever, heard of pancreatitis. I spent a month in the hospital, feeding tube, IV diliadid every 2-3 hours.
It came back two weeks ago, worse pain than the first time. I was only in the hospital for 7 days this time, and no feeding tube. I'm so scared it's going to come back, but I went right back to drinking the hour I got out of the hospital. I need to tell my family how bad my drinking is, put my entire life on hold, leave my job, and my house empty. I know it's my fault, my pancreas worked fine, until I started drinking. I just don't know if I'll ever be able to beat either of these diseases
I want to live a normal, happy life, but I can't stop drinking for more than 42 days. I pray to God I'll man up, and go back to rehab, before I end up going back to the hospital in an ambulance, toying with the thought of killing myself rather than dealing with the pain.
Dear Brother, look for alternatives treatments to alcoholism, they are there. Look at long term fasting once you are sober (under supervision) to help heal your pancreas. Don't give up. My sister was an alcoholic and went to rehab many times, she has been sober 9 years now. You are a worthwhile person, your life matters. Please fight for you and do whatever you can to be sober.
How are you doing now Tanner?
@@catcall569He likely didn't make it with the serious health issues and inability to stop poisoning his body. I hope I am wrong.
Thank you for your honesty about this terrible painful condition. My friend had severe pancititis for several years. She was admitted for IV hydration & tried many medications that rarely helped. My friend went to a nutritionist in Souderton, Pa. She was put on a elimination diet and continues to eat plain foods baked chicken and fish and mainly cooked vegetables. Also took the supplements that her nutritionist .advised. She took a powder drink mix once a day. Thank God she follows everything her nutritionalist advises. I am not good at following diet advice but I’m glad she does.
How is she doing now?
Elizabeth is doing very well. Some things pop up like anyone but her pancreatitis is fine now. She's very faithful and following the exact nutritional diet. Baked fish baked chicken
I absolutely hate, I mean hate the Emergency Dept. of Hospitals! I have yet to recceive any help from an emergency dept.s. It is appalling!!!
The prejudgments that Doctors have made of me are also appalling. So I can relate to everyone of these people and some of them have gone through hell and some still are going through hell. God Bless everyone of them and thank you for sharing your stories.
My son had been diagnosed with CP when he was 3 yrs old. This year 2022, he turns to 7 yrs old. He has been in and out from hospital frequently...also appointment with hospital every 3 months. He has gone through many times of MRI and also ultra sound. In yr 2020, my son experinced very high pain and doctors decided to put morfin to him. Only dripping until the doctors decided to do endoscopy and putting stent in his narrowing pancreas duct. Its works. After 3 months, they pulled out the stent and until now he is in good health. At the beginning, i cried a lot. But now, I decided to accept the fate and will make anything that could cure my son condition. Luckily my son being treated well by professional doctors and specialists. So, my son feel very comfortable whenever he get a treatment. So..I encourage my son to become a doctor so he able to treat people who have the same pain with him. Now, he is in preschool and making many friends. I am trying to make him lead a normal life with others eventhough I know its quite hard with his condition. My son had to bear this CP for the whole life. Never mind , he is my world, my strength, my love....whatever his condition is...I am proud of him forever. Luv from mom
Please send Dr.address
Why don't u try Homeopathy
@@vinayaksgujjar6149 HI my brother has same issue . Can you suggest best homeopathy treatment in India
I just got diagnosed with pancreatitis and I can not imagine going through the similar situations like these people.. I’m in pain everyday , some days harder then others but wow just because of some gallstones I now have this disease probably forever 💔😓
did u have your gallbladder taken out?
Antibiotics & anti allergy tablets causing Pancreatitis.
Trust me trust me please .
Speaking for myself, everyone on this panel has had access to procedures/medicines that cost large amounts of money...I'm doubtful any of them had been in poverty. I've been dealing with this disease since 2003 and after the first 5 years (but not excluding) my pain from this disease has been non-stop. I've had minimal procedures (ERCPs) only to "confirm" that I have a disease that I can provide clear history for. Its wild being dismissed many times over on account of socio-economic status, age, race and preconceived notions of alcoholism.
Our system is woefully broken, you are spot on. We are just left behind, to suffer and to die. :( my heart goes out to you.
It's disgraceful money overrides people's health disgusting !!!
I had the worst nausea and pressure at my pancreas. I did not have the intense pain but could not function from the nausea. I had also been recently diagnosed with high blood sugar and low thyroid. I was sick all summer and my doctor kept saying I had the stomach flu which I did not. I fasted on water for three days and then started eating foods for healthy pancreas and started taking digestive enzymes with my meals and that fixed me. I take the enzymes with my food and if higher fat or protein I will take an extra one in the middle of eating. I don't drink alcohol or smoke but was under extreme stress and think that triggered it.
Which digestive enzymes?
@@Hew.Jarsol Zenwise was the brand.
Thank you each and every one of you for sharing your stories. This disease is so under looked and I'm happy we are getting somewhere each and everyday! We have to keep fighting and pushing through! We are WARRIORS!!
Antibiotics & anti allergy tablets causing Pancreatitis.
Trust me trust me please .
Many came in my room and asked me if I drink. I kept saying no. I finally said look at my skin. I have perfect skin. I do not drink and I am not an alcoholic. I cried so much.
Antibiotics & anti allergy tablets causing Pancreatitis.
Trust me trust me please .
I'm so sorry that happened to you, I send you love and healing energy, you don't need that on top of it all... I had that happen by saying it's "just" my Bipolar, which is now well treated with the correct combo for me
As a veteran with long term chronic pancreatitis, I became weary of trying to get new interns (my VA is attached to a teaching hospital so vets see a new intern as PCP every 3 yrs) up to speed on a thick medical file just in time for them to graduate and have to start over again with a new intern. In February, I radically accepted that the VA was unwilling/unable to provide true multi-modal pain care, stopped taking my pain medication and added VSED (voluntary stop eating drinking) to my advanced care directive.
Have you been able to find a good dr somewhere? I hope you are feeling better!❤
Absolutely cannot eat fats. Lab test: Exocrine Pancreas Insufficiency suppose to be between 200-1000. I am at 50. I feel like I have been through a lot. These people have been through so much more. Made me cry.
Are you on pancreatic enzymes? What happens when you eat a fatty meal?
Thank you for giving me hope!😅
We are so happy to hear this! HOPE gets those healing vibes in high gear! #thriveon
I got it, and this sux I miss eating n drinking normally
These people are lucky to have medical access compared to someone living in a third world country. To manage this disease I have to think twice going to the hospital. Food on table for my family or hospital bills that's the constant decision I have to make every day I suffer.
Wise words brother
Yes, we are blessed to have been born into Countries who can help patients even a little. But I myself can't even think about them when I'm so sick and think it's best for me to be selfish just to get through. But atleast we can help some of our fellow - sufferers online a bit, we have to support each other when we're able. I'm grateful to those who shared here💕💕💕...
Thank u for sharing this video
I have a rt frontal lobe inoperable/untreatable grade V 'paper thin' AVM and pancreatitis..
I'm exhausted of the NEVER ending pain and given up HOPE of finding helpful doctors.
Thc HELPS but isn't enough to allow for actually being able to moderately function. At least it reduces the actual vomiting.
Vomiting of bile for YEARS upon waking (even a nap), and because its SO violent, my body would avoid sleep hence the 'nap'..
YEARS of this resulted in the weakening & literal crumbling and cracking of my teeth..
I want to THANK the "PATIENT LABELING ER DOCTORS", you made my life a LIVING HELL..
I'm not an addict nor EVER an alcoholic or even ever a binge drinker. I don't like the taste, never did.
I have a most unfortunate condition.
I am not suicidal or depressed.
I am angry about the "swiftness of labeling" not to mention that unwillingness to provide adequate or ANY pain management..
I wish it would hurry up and progress into cancer because I can not see any hope of improvement, let alone resolution.
Funny I never been diagnosed and I never go to hospital, but I just made an appointment bc I think I have it. It runs in my family. Plus my mom just had her gallbladder removed, but she said the pain is gone.
my mother and her mother had gallstones and had their gallbladder removed, now I have gallstones, found out after having my eldest daughter. Ive been really sick to the point of spewing everything down to the bile in my tummy and that didnt stop me from continuing to want to spew, I had nothing my tummy would be so sore to the point that blood would come up from the excess stress. I have pain (gallbladder attacks) that starts just under the ribs in the centre and then goes onto my chest and my back. Ive been having a real bad tummy pain that starts at the higher part of the tummy and my belly is so sensitive to touch, if I sit forward like in a fetus position it starts to settle, when I sit up straight or get up to do something its really painful in the front and on my back the pain radiates like theres a blade and someone is twisting it straight through.... I believe I'm suffering from pancreatitis for the last 2 weeks...
Thank you so much for sharing such a terribly difficult lifestyle. I will be brave for the future. So much new information about the pancreas.....I am sure your stories will drive research forward.
Antibiotics & anti allergy tablets causing Pancreatitis.
Trust me trust me please .
I had acute pancreatitis about 6 yrs ago
This is so much help for me I have chronic pancreatitis and nafld that has gotten worse my pancrease is gotten worse now they want to.do pain pump I don't eat no appetite but even when I take creon before I try to eat my stomach still bloats up like im 9 months pregnant what I hate the most is every damn doctor just assumes its from alcohol and I dont drink im terrified of the pain pump but this is the last resort sitting here on heating pad and hurting bad pain meds are not working like they used to its so depressing you can't ever plan anything I don't know day from day how its going to be does anyone have constipation issues ? Thank u for this tutorial about chronic pancreatitis. I now know im not alone and my symptoms are not in my head and I do not drink alcohol at all
I feel so alone no one understands this pain,thank I for comment
medbed is on its way
@mom Woodard
How long have you suffering from chronic pancreatitis?? What a your symptoms??
@@willjay258
How u doing??
same here
Please see beating pancreatitis website and Facebook groups for help. I find grape seed extract, curcumin and vitamin C helpful to reduce pain.
Very interesting information!! Thank you so... much!! Yes, way too many docx are very ill informed!! And, not at all helpful!!!
I'm going through this right now!
Twooo year and they just now found it
Curious about the out of pocket costs that these patients have suffered on top of the torture.
It’s another very significant affliction isn’t it.
I have had chronic pancreatitis since age 7. When I need help during a flare they looked at me like a junky till the bothered to check my labs, pancreas scarring, and med history. At a hospital I frequently go to I continue to be treated like drug addict, despite being asked to be in their studies, being treated like this is so dehumanizing.
Same here
My dad passed away at the age of 62, he suffered from chronic pancreatitis.
He experienced dehumanizing behavior from doctors and nurses, were treated not only like an alcoholic, who didn't deserve help, because "it was self-caused"
but also treated as a junkie out to score morphine.
I quickly learned that I his son, would have to be present at the hospital to fight by his side, if we wanted any hope of him being treated like a patient.
He had a blockage in his duodenum caused by pseudocysts and whatnot, in the last 5 years of his life he could not eat or drink, feeding tubes were first tried directly to his intestine, completly bypassing the stomach, this didn't work he was extremely malnourished, BMI of 12.
Then attempts were made by feeding tubes directly to a vein in his arm, putting nutrients directly into the bloodstream, this was his only intake of food during the last stages of his life.
Due to the obstruction in his stomach, the entire stomach sack would always overflow, and he would vomit blood, this was regular routine daily for years.
A tube was inserted into his nose, leading into the stomach, which allowed him to drain his stomach, this was necessary every 3rd hour, otherwise the stomach would be put under too much strain and he would vomit blood.
The contents of his stomach was always black fluids, an open wound in the walls of the stomach were leaking blood, this could never be treated or go away. They claim it was caused by the stomach working too hard trying to deplete itself, in an attempt to overcome the obstruction.
My dad who I've personally seen crush his toes, in the most horrible way, and he didn't even lift an eyebrow, but from the pain caused by his pancreas broken down and reduced to tears.
2 weeks ago, he was found dead on the floor in his apartment.
He's finally pain-free, though he's missed. I've never seen anything remotely similar to this level of suffering. He fought valiantly the entire way, what kept his spirit up, I will never be able to comprehend.
He would always talk about all the stuff he wanted to do, once he got better..
@@Lasse3 Sorry about your dad. The way I see it is your dad won, the hellcare system and big pharma lost. They can no longer rape your dad from his money or health. Alcohol, drugs, food, chemicals, etc that cause harm are allowed by the FDA which are a part of the same system.
@@Lasse3 Oh My Gosh!!😢
I am SO Sorry for both you & your father. What a sad, hard journey.
I have CP too. 55 here, presently traveling down your dads road…
I’ve tried to shield my 24 year old daughter from this as it’s already caused her trauma & ptsd. A lot of it was from those hospital stays.
Aren’t they just so special there?
Deep sigh…😔
I understand your words more than you know.
My mom was 56.🕯
Please take care of yourself & know you’re thought of.
You did a fine job!!✊🏻
I’d like to think he’s fishing now, or doing something he enjoys, checking in on you often..
You are a beautiful son!! 👏🏻🤗
@@suzyhomeacre thank you for your kind words, I would like to say something to you aswell, but there are just no words that can do anything, it can't take away from the nightmare you have been given.
But my dad's death is the most depressing thing ever, because it was so horrible to witness him slowly being boiled by acids from the inside.
He died most likely by a large pseudocyst that popped and he died from the enzymes eating his gut.
I wish now, that I had helped him economically travel to Holland where euthanasia is legal. He could have had a pain-free death surrounded by me and my sister, just sleeping in.
Instead he must have died the most horrible death imaginable, all alone on the floor with blodied vomit everywhere.
I have been crying ever since, I'm 30 years old, my mom died when I was 18.
I just know in hindsight that I should have been much much more compassionate towards my father, helped him out, showing him that he is loved and that he has support during the horrible nightmare that would go on for 15 years.
You should really concider some form of euthunasia, when you get to the later stages of your disease, depending on what kind of complications you experience.
Keto restored my health from chronic pancreatitis
And gallstones....although I had to take fish oils to help
Hi Sims Life, Can you elaborate please? My husband has just been diagnosed and we're trying to find more info about this. I don't believe he is going to become as healthy as can be eating the low fat diet the hospital have recommended. I haven't found any resources taking about keto and pancreatitis yet. Did you read a book or anything? Thanks
@@danjibutton go to Dr berg on CZcams and specifically look up videos for it. I had to do the things he suggested first then started keto. Lost 60pounds and no pancreatitis since
Im new to this , stabbing pain , nausea, heavy headache, tired, feeling like my body is truly shooting down on me, depression, gallbladder problems, a lot of weight lost, low blood pressure and pulse, I just want to get back to my normal old life but I don't know if there is way back to a normal life 🥺💔 for the moment the whole situation feels hopeless.
Hey same here
What are you doing now?
What treatment
Imagine your doctor removing a organ from your body and you still have the pain
1 pancreatitis attack, my teenage son had to carry me down the stairs as I was begging him to knock me out to make the pain go away. I’m heading to UC Irvine for surgery soon to rule out cancer, and this has been ongoing for 6 yrs. I hope so badly for my road to end, but I know it is long.
Sending you peace, healing, and praying that UC Irving could help you 💕🤗🙏🏻
The ER dismissed me when I said I use Marijuana. No fluids were given, and I went home with the same pain.
thankyou for sharing your experience, I did treat this pancreatitis infection but still, I did not get the best treatment in my country. anyway, I am treating it by reading about the disease and praying and drinking holly water that is all I can do, praying heals me then sit and is sick. still, it is a very complex hormone impact deficiency almost 3 years fighting.
I am desperately looking for ANY treatment for my mother who is in tremendous pain. Last week she called & I couldn’t understand anything she said except screaming. I met the ambulance the in 5 min. She was white & at deaths door. It shook me since I had never seen her I’ll like that. In my mind she was not long before dead. I can’t find any Dr able to help her. I hate our medical system of profit before life. If. Your retired with Medicare, you’re as good as dead. She only weighs 117 now. It’s slow death by pain, vomiting & starvation.
I am having pancreas flat ups more
Thank for site
I understand!!!
Omg I cant believe I found this. Im on hydromorphone and enzymes. Its under control but its been 5 years now. I thought I was going crazy. Never heard of this but I sure do now. Pain and nausea is my life. Praying I dont run out of pain meds. The worst feeling is going to the hospital and explain the feeling get iv fluids a dose of hydromorphone and anti nausea then
I don’t think it’s humane to leave patients who are suffering with this to go through it without pain management.
Effective pain management is the key to dealing with chronic pancreatitis episodes You are absolutely correct! Thank you for viewing and for your comments!
I dont get the pain as bad as most of you here, but i do get Nausea after eating for a while. Feel sick after food. Strange WTF?
I am just learning about this terrible ailment. I currently most likely have pancreatitis as my lipase is 4 time's high the normal of my lab. Bout #2 since 2017. CT scheduled so hope for answers. No gall bladder, no alcohol use. I did have gastric bypass in 2004.my B12 is also dropping.
Hieee...there how u feeling at the moment...i was diagnosed with acute gastritis a year ago but 2 months ago my doctor recommended me for blood test to test for pancreatitis since my pain wasn't going away. Blood result came back indicating a slight increase in amylase. Ive loss weight for almost 2 years now....ct scan is not working in my divisional hospital. How about you?
@@Ben-cp6nb better thing sphincter of oddi dysfunction. Need to see another specialist.
Im suffering from this right now. Nothing was done by my pcp. They called an ambulance from my doc office. The hospital sent me home after a cat scan. They dont know whats wrong. The ER thinks i have ulcerative colitis. But iv been vomiting for weeks now with excruciating pain in my abdomen and back. I start sweating about 3 years ago. Iv been dealing with this for years. Im ready to just die at this point. I cant go on like this anymore
Don't be...you a not alone dear, m also suffering from this illness together with gastritis for almost 2 years now. Being searching for ways on how to get rid of this sickness. I do understand how you feel right now cz i sometimes have those feelings as well but please lets not give up now and lets stay hope and continue to search and pray for recovery.
I feel your pain just wish doctors would
My husband is in the hospital for this now has been there for 16 days this time. In our area, in Portland, Oregon there are two pancreatic gastroenterology specialists That I've been told buy a trauma surgeon that practice at OHSU (Oregon Health sciences University) and Emmanuel Hospital in Portland, Oregon. That handle this type of illness. Possibly try and locate this type of specialist in your area? We are part of the Kaiser Permanente healthcare system and there is a pancreatic GI specialist that my husband is seen now.
Antibiotics & anti allergy tablets causing Pancreatitis.
Trust me trust me please .
I have had what I believe was pancreas problems I believe we're triggered by alcohols and canned corned beef it was after this that I believe triggered what I believe was symptoms of this only any of the treatments would make a worsening , I didn't feel better for months , sometimes medical treatment worsens the problem I learned pills or drugs worsen , so I back off of meds eat healthier non taxing meals , smaller portions . It helped mine .
I feel for you the pain is horrific many times I've basically crawled to hospital only to be told my bloods are fine you can go home I found out that my mum had terminal cancer I went off the rails and started drinking cvodka I never used to drink then I was told of a private Dr that gives you prescriptios for£30 every two weeks and I a drunk got hooked on opates and am in recovery and on methadone and when I first had pancreatitis I was vometing blood and was given oral morphine 21/2 miils ever 4 hrs and and vitamin D and fluids many times as soon as the Dr knows I'm Alex drinker and ex ivdrug user my go closed down I can't find a gp anyware I'm in different degrees of pain 24/7 I vomiet most days have explosive diarrhea and mess myself sometimes at night I've deppesion anxiety apthy fluctuations in weight but have lost about two stones in weight the methadone clinic gives me my methadone weekly due to having clean urine tests for drugs and they don't deal with GPS general practitioners I don't take care of myself or home I honestly wish I would die when I sleep that is maybe 5-6 hrs out on a good few days the drs who look down on me as junkie alcoholic if there's a hell I'm in it I can't bear this no more after my mum died my brother took his life we had a evil stepfather he sold the house for cash and did more spiteful things then my two aunt's died just over a year apart then pancreatitis and then chronic pancreatitis and the private Dr was struck off and I got a methadone maintenance prescription I shut my self off from the few friends I had their is so much discrimination against ex alcohol drinker's and exdrug users I am not living in just existing Ind a world of pain to put it in perspective I would rather have both legs cut off without any pain relief rather in a bad flair up if some best drs one minute of that pain would help me reall. I fear going to hospital praying I get a good r Dr who knows the pain of chronic pancreatitis and will help you not saying your bloods are fine and discharge you I honestly from the bottom of my heart wish those with chronic pancreatitis pain and other conditions I wish you all the best and may your condition and may you have no pain Godbless from Marcus Hampstead village NW London UK
Sorry for your suffering. Keep pushing. It took me 9 years to get a diagnosis
So sorry you have had to endure so so much suffering in your life my Dear, I honestly don't know how you've survived!! You clearly want to live and you NEED to be given more respect, help with pain and support ❤fight like hell, you deserve some happiness and relief and understanding.. You matter ❤love and pray ers🙏🏻💓
My symptoms or pain starts on the lower back and radiates to abdomen. Is it not common ?
Our experts suggest that symptoms related to pancreatitis can vary from patient to patient. However, if you experience a new or worsening symptom that is unique compared to your norm, please consult your doctor as soon as you can.
You can make a tea from the flower of marijuana also add cinnamon honey turmeric and ginger root you can add fresh berrys for taste
It’s mind blowing that 56k watched this video and I hade to still occasionally inform Drs. what is wrong with me. 😞
Please keep spreading the word!!
Thank you. 🫶🏻
Hi Suzy - so sorry to hear that doctor visits haven't necessarily been successful for you thus far! Have you been seen at one of our NPF Centers of Excellence? Providers at these locations are experts in the pancreas and may be able to offer some assistance - more information and locations can be seen here: pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
@@NationalPancreasFdn Dr. Timothy Gardner was my Dr.
@Mayo. I’m on pert, lifestyle & correct diet choices & pain meds.
At this point, there’s nothing to left to do for me. No islets left..😔
He’s an awesome, brilliant & kind man & Dr! So grateful!!
Thank you all for caring.
Btw,
My daughter, just started Creon 2 weeks ago. At age 26, just as I did..
Idiopathic in nature. Same as mine.
I have no idea what happened to us.
Please keep studying this disabling, painful & thief of a disease. It’s a terrible thing to endure.
I thank you, & remember,
We Need You!! ☮️🫶🏻
I am about to go into surgery for necrotizing pancreatitis and my gallbladder has to come out. I am terrified my life will be shorter and the quality will be reduced. I hope I am lucky. I want to survive and live. I do not smoke, eat fatty foods, nor drink. I want an answer so I can make changes.
Prayers. How did the surgery go?
I had a very painful gallbladder attack, I believe a stone had passed through the duct, I have been having pancreatitis pain for a couple weeks now but the attack I had this morning was very very painful non of the other attacks were ever this painful. Now I have the pain back for the pancreas in the front of my tummy and through to my back.
What about those like myself w/out enough islets left to reroute to my liver? It’s no longer possible.
I had the scope to check for them.
I’m at a place now at 55 years old, my first attack at 15, now idiopathic cp for decades. It hurts bad!!
I’m on pert therapy of course, & have a Qol that’s rapidly decreasing…what do I do?!
Is there anything left for me to do about this at all?
I’m losing all hope here...
Turn to the Lord. Pray. Pray deep, get personal. I pray that Jesus heals you, in Jesus name, amen! I'm 48 with multiple organ inflammation, pancreas, kidneys, lungs, heart, brain and arteries. Rapid weight loss, night sweats, severe pains and my doctors can't seem to find the main cause. I've became to know Jesus as a result.
@@venomx4093 No offense, but how do you know that I haven’t done that already? That I haven’t traveled down that road intimately & extensively?
Are you going to tell me now that both our present & prayed for
non-healing are due to some hidden sin or perhaps a generational curse?
I think not.
I think some of us just got some seriously rough hands w/the cards that we were dealt.
I just hope we can both have compassionate health care while on this difficult journey.
A swift healing to you, I also pray.☮️
@@suzyhomeacre I don't know if you have or haven't, but can only hope that you have :)
@@suzyhomeacre Best of luck with the compassionate healthcare. I have been doctor hopping for 9 months trying to find one that will actually listen to me. I've had multiple opinions based on labs, but all just say my symptoms are strange and don't match what science says. My diagnosis has been cancers, gallstones, kidney stones, inflammation, metal toxicity and so on, but each treatment seems to make matters worse. I was about to have a whipple procedure done until a 2nd dr told my dr that he didn't think the diagnosis was correct. I've had biopsies that says this or that, but the labs didn't fit it. I've been taking massive amounts of natural supplements in an attempt to slow or stop whatever is going on. I asked if the supplements could be impacting my labs and was told they didn't think so. Elevated absolute neutrophils, wbc, loss of lower leg hair, foot numbness, bone pains, moving full body pains, rapid loss of vision, urinating microscopic blood, out of control blood pressure from extremely high to very low, severe light headedness, non stop gurgling in my abdomen, can't eat without getting severely bloated, and a host of other issues. I told my wife that when I die, demand an autopsy so that at least she will have the final answer.
@@venomx4093Try a carnivore diet and let us know how it goes for you.
Please share best treatment for this problem (suffering also age 10
Why is no one talking about the cost of care for this disease ?
My,14 year old nephew is suffering with Pancreatitis.
Hi Patricia - we're so sorry to hear that your nephew is currently struggling! A local Center of Excellence may be a great resource for your family: pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
I am diabetic and I tend to believe diabetes came just due to pancreatitis that was diagnosed in my early 30ies. I sometimes had pancreatitis flare-ups especially after having drunk alcohol. Do you think I stand a chance of reversing both diabetes and pancreatitis? I have decided to abstain from alcohol
You can reverse Diabetes with your diet. No cure for pancreatitis
I don’t have any islets left. 😣
Dr what can lead of loss of pancreas normal lobulations , and what makes tail looks bulky in a CT SCAN, though there is no tumour
Hi Harpreet - thank you for your comment. Unfortunately, we at the National Pancreas Foundation are not medical professionals, but if you'd like to speak with a physician at one of our Centers of Excellence, you can search for one near you here: pancreasfoundation.org/patient-resources/npf-centers-of-excellence/
🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
Its 2024 any update about treatment
I had my gallbladder taken out about 2 years ago due to gallstones. About 2 months ago I woke up in pain. It felt like the same pain I had with the gallstones. But worse. The worst pain I’ve ever experienced in my life. They gave me morphine every 2 hours. But tried to wean me off with other drugs. Nothing worked except morphine. I stayed 6 days in the hospital.
I used to drink a lot when I was young. But I slowed down when my son was born. That was 25 years ago. When I asked if I could still drink the docs said yes. They didn’t recommend a change in diet either.
But now I have a spasm or cramp every day. And I googled it. Might be Sphincter of Oddi? And everything on CZcams is so concerning. The docs said most likely I will not have another attack again. But in the comments and a lot of other videos so many people have lifelong problems. And to be quite honest the fear of going thru this kind of pain again has made me quit drinking altogether. The risk of having an acute attack simply isn’t worth it for a beer or two.
Where can I get this surgery
I don't know how I will fight with this disease...cp...I am 31..need someone help.. I don't wana die
Hi - please reach out to us at info@pancreasfoundation.org and we'd be happy to try and provide some helpful resources.
If you have pancreatitis don't go to St Luke's hospital
True.
Why does pancreatitis make us so tired? Is it the maladsorption?
Yes the malabsorption and the pain, as both zap our bodies of energy and nutrients
Antibiotics & anti allergy tablets causing Pancreatitis.
Trust me trust me please .
0:52 0:53
What's tap id
Most doctors are super ignorant regarding pancreatitis. They have no clue how many things can cause it, nor do they know how to treat it. Yet ... most think they are omnipotent when in fact they are fools. No patient could possibly know anything about disease manifestation, progression and treatment without having an M.D./O.D even though that patient's IQ may be much higher than theirs. And when you ask them questions they do not know the answer to they either lie or get pissed, especially if the questions show that the patient may be way more informed than they are about their condition. Doctors need to learn they need to listen to their patients especially the one that show they may know more than they do because unless it has changed they get a one hour lecture about AP and an hour lecture about CP. That certainly doesn't make them an expert much less omnipotent. If you can't tell I don't have a high regard for the medical "practice" because they practice on me, my family etc. Gallstones are the number one cause of acute pancreatitis. Alcohol is number two but the patient doesn't need to be an alcoholic to have alcoholic pancreatitis. They may have a genetic variant that predisposes them to alcoholic pancreatitis and in that case it can take very little alcohol to trigger an attack of AP. Drugs are another top cause. Believe it or not narcotics just keep the inflammation hot, drugs for diabetes are deadly, ace inhibitors such as captopril and lisinopril which contain snake venom peptides cause AP as do many other drugs.
My life is hell.
Well, good thing for you that you have the almighty $$$$$$ to enjoy what’s left of your life!
Hi
My name is Kimberly im from Pakistan and worried about my sister Anum who is 33 year ols is diagnosed on 22/09/21 with acute pregnancy during her 36 weeks of pregnancy. Doctors provided supportive therapy and with pre term labour and gave birth baby boy who only survived for 3days.
In January she got another attack of pancreatitis and managed with conservative treatment.
We are very helpless here doctors and treatment are very limited.
Please help us with your expertise
I shall be very thankful to you.
God bless you all.
Your sincerely
Kimberly Waris
Where from pak?
So why you reading if is your own story.dont look at down and reading.