Dusty’s Story of Courage
I remember from childhood until I was diagnosed at 24 the horrible pain with no explanation. Doctors E.R. visits, no one believed me! When I got older and even now the D.Rs and med. staff accuse you of being a drug seeker. I am NOT!. I was raised on fried food here in the south, and rich desserts, I ate them and suffered! I can’t even eat syrup without it doubling me over with pain! and don’t get me started on red meat. now I take enzymes with every meal, since 1984 and still have problems. I can’t even drink at my kids wedding; or it will be a hospital visit. I am afraid of needles and have small rolling veins, and detest NG tubes. I seem to know more about my pancreas than most D.R.s but they won’t listen. Thanks Dr. Reeve, he said no one would believe me @ my age (then) so he gave me a note on his prescription pad that states I have chronic idiopathic pancreatitis with steatorrhea I copied it and laminated it and still carry it in my purse since1984 and some Dr.s still question it; but it has been a life saver. Get your D.r. to write you one and keep it with you at all times! keep a food diary also & your emotional state at the time. I miss fried fish and T-Bone steaks- now sugar makes me sleepy, guess we are starting a new chapter of my pancreas and me. Don’t let anyone make you feel like a drug addict, your D.r., your family, no one, they don’t know how frustrating it is when no one listens or believes you, how bad the pain & sick feeling you are,& the bloated belly, sometimes I wish they could feel it just for an hour, then maybe they would understand. I am 50, I guess cancer is next, it does run in the family; but hey, I will have a perfect body one day. Be Blessed..D.B.
I have suffered with CP for 6 years in April I had a Total Pancrectomy. I still have problems, I only have 2 ounces of my stomach left. Have u thought about having a tp?
I understand completely what you went thru. My daughter was 14 years old whe she had her first attack. To be frank it scared the hell out of me. She is now 31 and her pancreas is scarred from all the attacks. It took years to convince the doctors that birth control pills were the problem. She was put on them when she was 14 due to severe cramps. 6 months after starting them she had her 1st attack. She went thru so many procedures and also had her gall bladder out when she was 18 and of course the doctors still wouldn’t agree with me. She will never be able to use birth control pills due to the estrogen in them. She had a high risk pregnacy due to the panceratitis, a few attacks and put on bed rest 2 months before she gave birth. She has to also stay on enzymes and watch carefully what she eats.
Hi Dusty,
Your story is very familiar, I had two kids with chronic genetic pancreatitis. They were diagnosed at a young age but still when we go to the ER they think my son is seeking drugs and they ask my daughter is she is having her period.
Thank you for posting your story
wow you can only imagine how familiar your story is. ive had this for almost 2 yrs and i barely can play with my children, im only 29, and have some piercings- which i have to take out before medical staff see me, because of the stereotyped drug seekers. it really is a pathetic thing that someone who is so sick has to go through so many life threatening operations, icu stays, and dr’s who drop you, to get the help we need to stay alive. i have had a few dr’s who do care- or learn better of me. one was at an e.r.- he saw me- and told me, w/o examination, w/o blood work or looking at my chart “i hope you know im not giving you pain meds.” i told him that he should be ashamed of himself for calling himself a dr- after he stated he would not treat me, i walked out. the next time he saw my mother- he apologized, and even gave her a hug- for she had been there that night with me. when he saw me next- he immediately ordered tests, which turned out positive for the pancreatitis i suffer from, and he admitted me, with warm treatment, and well wishes. hes been good with me ever since. sorry for babbling dusty- but thank you still for your story- no longer do i feel alone in knowing these hardships we all face. well wishes and a hopeful recovery for you.
~Kira
ive have hereditary pancreatitis all my life, and only got diagnosed at eighteen. when i used to get a sore stomac as a child they thought it was just reflux and would just send me home with antiacid pills..
i am now twenty three and im still having on average four attacks a year.. it’s quite scary to go threw alone knowing thats its all up hill from here 
but i guess i have to stay positive and keep living while im still breathing 
hopefull they find a cure so no one has to go through what we have to in the future -luke m