Detecting Hereditary Pancreatitis: Rhiannon's Story

[@jmtrs79]

My daughter was inpatient and they determined acute pancreatitis. My prideful MIL kept from us the fact that her mother died from pancreatic cancer. It’s truly sad when family cares more about pride than their own grandchild.

[@jasm3713]

Hi I just went to the hospital. They left me no answers. But I pray it is not this. My mom and sister have the same issues but I got a BAD flare up first one. I send so much love to anyone who suffers this ❤️

[@thelastcreambender]

thank you for making this. my dad suffers with this chronically and is constantly in and out of the hospital to no avail. has never touched a drop of alcohol beyond what’s considered recreational. my great grandmother had the same thing and he’s always been open about it but has downplayed the possibility of me inheriting it. lots of digestive problems and some repetitive acute abdominal pain for me and I’m only 18. I’m really hoping it’s not pancreatitis because I’ve seen how bad it gets, and I just know I would refuse anything opioid related. the pain is scary just seeing it in another person, and I admire your bravery throughout the whole emotional and physical journey this has clearly been for you.

[@MissionCure]

JJ, Thank you so much for this comment and I'm sorry for the delay in responding. Given your family history, it makes sense for your dad to get genetic testing. There are materials and a webinar on our website about that. If you email us at [e-mail], we can recommend a doctor who understands this disease depending on where you are located. Take care! Megan (co-founder)

[@debbieclark404]

Hi I just want to say my son of 31 has just been through the worst time of his life.He was going about his day when he had the most terrible pain you could imagine his wife phoned for an ambulance and he was rushed into A&E he was being sick every couple of minutes and he was having morphine for the pain but that never touched him.He got to hospital where after doing checks they gave him a scan by now they knew it was pancreatitis the family were all told to go to the hospital where they told us Tom my son was not going to make it all his organs were shutting down and that his pancreas was just mush he was put in a coma and we just had to hope he would fight as he was young and very strong.Now what I want to say is my husband Tom's father died of the same thing 20 years ago and that the doctors now think it is probably hereditary.To cut a long story short Tom was in a coma for 4 weeks and iam so grateful to say the least he came through it.After 6 weeks in ice he has come home he has no pancreas now so he is diabetic and he has to live on I think it's called creon tablets for the rest of his life but at least he is still alive.I have missed out a lot of things if there is anything you want to ask then please do. Wishing you good health.X

[@jackieg444]

Omg I literally have the same diagnosis I was so afraid 😱 I pray for you !!!!! I’m having a hard time finding out why I get flare ups so that’s how I found your video 😭😣

[@7thCruisader]

Same here! How does one manage this pain and prevent going back to the hospital? Even with following the low fat diet- healthy life style? I’ve been sober for 6 months and it keeps coming!

[@7thCruisader]

Same here! How does one manage this pain and prevent going back to the hospital? Even with following the low fat diet- healthy life style? I’ve been sober for 6 months and it keeps coming!

[@7thCruisader]

Also forgot to mention I’m 22 so I’m even younger. What the heck

[@MissionCure]

@@7thCruisader Thank you for your comment. I'm so sorry you have to deal with this unbearable pain. We have a page dedicated to pain management that might be helpful to you. You can find it here: mission-cure.org/about-pancreatitis/pain-management/

[@petermartin9335]

Hi ! Thanks for your video ! I'm in a very similar situation to yourself. I was diagnosed with acute pancreatitis in 2016. They said it was due to alcohol, which I doubted . My mother had pancreatitis and never drank nor smoked. Anyway, I believe familial pancreatitis can be greatly improved by steroid drugs, which you didn't mention. You might like to check this out yourself, if you haven't done so already. Some doctors dismiss this condition all too easily as due to alcohol resulting in poorer treatment. Good luck and good health !

[@Rheeps1]

Hi Peter, thank you so much for your comment! I hadn’t heard of the steroid treatment? Are you able to talk a little more about this? Its been a while of dismissing my symptoms but the actual definite diagnosis is very fresh for me so I’m just trying to come to terms with it all and I’m still waiting to hear about a treatment plan going forward ! I hope you’re well, and thank you so much again for commenting xx

[@petermartin9335]

@@Rheeps1 Hello again ! I hope you're well. Pancreatitis is a pain. I never used steroids, but that's what I read during fairly recent internet searching, having been frustrated by doctors almost dismissing me as an alcoholic, when I haven't had anything alcoholic since 2016 when I first was diagnosed. I'm sorry but I can't give you a link but that was my understanding that steroid treatment is very useful with familial pancreatitis. Of course, we need to avoid alcohol , but I believe fructose syrup is just as bad as alcohol and it's in many everyday products. I found that digestive enzymes called Enzyme Digest, an over the counter equivalent to Creon, makes a difference. Also, a herbal remedy called Grape Seed extract has anti inflammatory properties and I've found it useful in pain elimination. Another is the use of Turmeric. You can use it in cooking and you can make a tea from it also. I've reached a stage whereby I always get copies of my medical records and study them. Frankly, most doctors I've come across are just plain careless, and seem never to be familiar with my medical history. I think it pays to keep them well advised ! I wish you good health, and if I can be any help feel free to contact me.