Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

hereditary pancreatitis

lcfranklin Message
29 Nov 2008, 03:31 PM

My precious grandaughter has hereditary pancreatitis. She is 8 years old and it was a long journey to diagnosis since the first probable attack at age 3. The feeling is bleak and we have so many unanswered questions. Feel a need to talk to others who have been dealing with it. Please write back. Thanks Linda
Proshop Message
11 Dec 2008, 12:49 AM

I found out i have it to, Im 30 and it has been a looooong battle just to diagnose my condition. If i Can answer any questions please feel free to ask. ps. make sure she drinks alot of juice and water..
lcfranklin Message
9 Oct 2009, 03:38 AM

I have been having a hard time with the computer which is why it's been so long. How have you been?
Proshop Message
9 Oct 2009, 01:09 PM

Supprizing well. My super low fat/grease diet and lots of small healthy meals along with my enzyme regimens has done well for me. i get scoped once a year now and they said the the scarring is still the same 20% as last time. I haven had an attack in a almost a year! The hardest part of this ordeal was the diagnosing. Im super glad you have it properly diagnosed, doctors told me the nausea was all mental because all my test came back good. 5 GI docs i have been through the ringers with and they wanted send me in for mental evaluation. Well they were kind of right, my panchreaus wasn't functioning well so i was not absorbing the proper nutrients for good mental health. I was suffering from horrible anxiety which would trigger my Fight/flight response leading to my body ordering a mad rush of adrenaline which sends the pancreas into overdrive. It was a horrible snow ball effect. How is your daughter doing? If there is any insight I might be able to help with please feel free to contact me. My E mail is ProshopPaintball@sbcGlobal. net I wish your family the best, I would not be here today if it was not for my persistent wife.
lcfranklin Message
9 Oct 2009, 11:59 PM

Great to hear you are doing so well...a year is fabulous. I think we are missing something because she had an attack in July and one a year ago in Sept. Are you taking enzyme supplements, if so what is your perscription. Pills or powder? When and how much? How about sports etc.? Thanks for your communication.
Proshop Message
10 Oct 2009, 03:44 AM

I take VIOKASE pills . Two before I put food in my mouth and one before snacks. I also take two Protonix 1 thirty minutes before i eat breakfast and 1 thirty minutes before my final meal of the day. I eat all day everyday, lots and lots of small meals/snacks. I am still very sensitive to fat and grease. I also drink a ton of water and Propel/gatorade. I have found it to be in my best interest to stay very hydrated, it makes me feel better all around. I pee about 10 to 14 times a day which is a hassle. I have noticed that a sure sign of me not feeling good is loose stool. It sucks to talk about it but it truly is a good sign you are not digesting enough. I can give you a ton more details if you think it might help. Things like my menus of cooked foods and snacks etc. don't feel uncomfy asking me anything.
lcfranklin Message
14 Oct 2009, 01:56 PM

Hello again, Thank you so much for being so helpful. Everything you said is helpful. I had not heard about the adrenalin acting on the pancreas before. Another thought I can share is I read of an advanced case where the man began to puree his food because so much was not being digested and it helped him. To me that means that at anytime soups and mashed foods would be helpful . Also I just learned amylase ans lipase is in saliva so thourghly chewing meats and and other hard to digest foods would get a head start in the mouth making it easier all the way down on the pancreas. I would love more info on menus and helpful snacks. The same stuff gets a little boring. I was also wondering if you have had any surgical procedures and have you had any issues with diabetes. Sounds like you have a great wife for helping figure out what was wrong!! How long did you struggle with symptoms before diagnosis?
lcfranklin Message
25 Oct 2009, 06:40 AM

Has anyone heard of stem cell research geared towards replacing islet cells?
Jmy239 Message
13 Jul 2011, 12:51 AM

Hi, I'm 21 years old and was diagnosed four years ago. I've recently noticed that my heart races and my chest becomes tight during an attack. Has anyone else had this problem? I was attack free for six months and now this just started
Tina1968 Message
3 Mar 2012, 01:42 AM

I have suffered from tummy problems for along time im 43. Diagnosed me with HP this week. My sister and nephew has it.I have been given the the info on ICT. Will follow up when i know more.