Keri’s Story of Courage
My name is Keri. I am a 37 yo wife and mom of 4 kids. I am not a drug seeker, a faker, or a loon. In 2005, I was struck with severe belly pain and nausea. I called my doctor but it was late…so they sent me to the ER. They confirmed my first attack of acute pancreatitis. I spent 3 days in the hospital. In the months following, I had a battery of tests. They found no cause for my acute attack. Then in August of ’06 we were camping and I was hit with another fit of severe pain. I tried to stick it out and finish our camping trip…But we bailed after a day and I went home to go to the doctor. Once again they confirmed the diagnosis “acute pancreatitis”. This episode was a tough recovery because I was not admitted to the hospital. I continued to struggle with moderate pancreatic symptoms but all enzyme levels were normal until Nov 2007. This acute attack caused a 6 day stay in the hospital, followed by months of continuous symptoms.
After 3 confirmed attacks, I went to the University of Cincinnati Pancreatic Clinic in Cincinnati, Ohio. They performed an EUS that only showed 1 marker for chronic pancreatitis, so my official diagnosis was “Idiopathic Acute Relapsing Pancreatitis”. In 2008 they removed my “healthy” gall bladder to see if that would help, but the symptoms and pain were ongoing.
On Oct. 29 2009 the severe pain hit AGAIN. I was admitted on 11/2 and by 11/6 the doc started TPN because even after not eating for 9 days my enzyme levels were still elevated. I was in the hospital almost 2 weeks.
I went home on TPN for 6 weeks. I scheduled a follow up with UC. They did an ERCP w/manometry. The ERCP confirmed high pressures, called Sphincter of Oddi Dysfunction(SOD) so they did sphincterotomy and stents. The ERCP did cause a very painful acute attack as expected so I was admitted for 5 days.
Currently, I am scheduled for a surgery to rule out abdominal adhesions at the end of July 2010. I have been doing research and have found how little the pancreas is actually studied. There are only a handful of places in the US doing research.I have chosen to go to the University of Minnesota~Fairveiw. I am in the process of consulting with Dr. David Sutherland at the University of Minnesota . I am just hoping insurance and travel all works out! My goal is to make the purple ribbon (pancreatitis/pancreatic cancer) awareness as well known and funded as the pink ribbon!! I choose to use my story and suffering to help others know more about this powerful organ. We really need to get the information to the masses and this is what I can do in my little corner of the world.
I am 51 female and a non drinker etc…I just was released Aug 5th 2010 with my 3rd attack since Jan /10. They have diagnosed me with idiopathic pancreatitis . I had my gallbladder removed in June 2010 and my attacks have returned. They have found no abnormalities and decided against the ERCP to make an incision to drain the pancreas ducts as there were no good reasons to do it. I have recovered each time after 4 day stays in hospital and my amylase and bilirubin have all returned to normal quickly. It is very worrisome . I have been put on URSO to keep my bile thinned out. I live in Kingston Ontario Canada.
I am so glad you are getting your story out! There are other out there wondering WHAT THE HECK IS WRONG with their abdomen!
God has allowed this, now we just have to figure out what to do with it! Love Ya, Jodi
I had the exact symptoms for almost a year. 8 stays in the hospital. Finally I had a scope done at Hershey Med Ctr. and the surgeon removed two benighn cysts, and all inflamation he could see from my stomach and induadium. (sp?). I have been totally pain free since May. (This is August).
Hi Keri,
I hope your appointment with Dr.David Sutherland goes well and hopefully he will be able to do something for your pain and problem so that you don’t have to suffer. He is a wonderful doctor. One of my good friends had surgery (Islet Cell Therapy) at the same hospital and Dr. Sutherland did it.
He became so active, his sugar levels were coming to normal, he went back to work after staying home doing nothing totally dependent on his wife because of this stupid pain. He was enjoying his life, he went and did some construction work to his parent’s house I mean he was having great time of his life and he was so grateful to Dr. Sutherland for giving him his normal life back .
We were good friends and I used to receive phone calls telling me how great he is feeling and how many things he was able to do and sometimes emails etc. I used to warn him about his surgery and he needs to take it little bit easy and he was pushing himself to work hard and making money, spending for his family made him so happy nobody and nothing could stop him. This guy who defeated pain which controlled his life for yrs. with the help of Dr. Sutherland and doing so well unfortunately lost his life to Swine Flu.
It was so saaaaaaaaaaad! It was a big shock for me. He was my only friend from Care Place who listened to me, share with each other about our struggles with pain and understood, encouraged so that we go on, move on with our lives.
I’m sure Dr. Sutherland will help you definitely. Please pay attention to the part how happy he was getting back to his normal life. That was the second person I saw after having Pancreatitis and going through different procedures totally getting better. The other person had the surgery with my surgeon HUP, Hospital of PENN, in Philly, and she suggested his name. So, I’m sure you will definitely get better. I’ll keep you in my prayers and hope everything is going to be alright, you will get better and you’ll get back to your normal life.
Yes, we need to create awareness about this problem and I write articles to a web magazine and published few relating to Chronic Pancreatitis. If everyone of us try to do in our own way to educate people then definitely we can get the purple ribbon the awareness as well known and funded as the pink ribbon! You go Girl!
Lots of love and hugs,
Durga.
dear keri, i have been suffering from pancreatitis for nearly 18 years, it started with five really acute attacks,have had ercps , internal altrasound,now i have what they call chronic recurrent pancreatitis. i have had that many cat scans it’s a wonder i don’t glow in the dark,my stomach swells nearly three times it’s normal size, and it is so hard. it has been swollen like this for nearly a year and a half.i would give anything to feel normal again.drs here in australia say there is nothing more they can do for me, that i have to learn to live with it. they should learn to live with it. its not nice feeling nausas all the time,when you eat you feel worse,suffer from heartburn even when you don’t eat. they have me on endone for the pain(it’s about 6 on the scale 1to 10 with 10 being the worst pain you have felt ). ialso had presideo cyst on th head and tail about the size of golf balls, but they did’nt worry about them, i hope you have beter luck than i did judy from aussie .
I NEED HELP I HAVE BEEN THROUGH COUNTLESS BLOOD TEST,MRI,MRCP WITH GAD AND EUS. I HAD THE EUS 4 WEEKS AGO AND WAS DIAGNOSIS WITH CHRONIC PANCREATITIS WITH A THICKENING OF GALL BLADDER WALL WITH SLUDGE. I HAVE NOT FELT WELL SINCE THE EUS AT ALL,I WENT TO THE ER WHERE THE PROCEDURE WAS DONE AND THEY GAVE ME A PREGNANCY TEST? AND GAVE ME ANTI NAUSEA MED FOR PEOPLE ON KEMO? I WENT TO A PAIN MANAGEMENT DOC WHO KNOWS ME FROM A BROKEN LEG IN THE WINTER AND HE PUT ME ON ROXYCODONE HE COULD SEE THE PAIN IM IN. I WENT TO A GI AND HE TOLD ME MY STOMACH IS SWOLLEN BECAUSE I HAD A CAST ON IN THE WINTER, I HAVE ALWAYS BEEN THIN ,I LOOK AS IF I AN PREGNANT BUT I AM 47 AND MY HONEY HAS A VASECTOMY. I LIVE IN SUFFOLK COUNTY ,NY DOES ANY ONE KNOW OF A GOOD DOCTOR ON THE ISLAND OR MANHATTAN HELP I WISH YOU ALL LUCK MY QUALITY OF LIFE HAS DETEREATED IN 4 WKS HELP US ALL DEENA
i ALSO HAVE 2 DILATION ON THE DISTAL PORTION OF MY BILE DUCT IT IS NOT CANCEROUS AS OF YET BUT IT IS MORE LIKE NODULES,I CANT MAKE A BOWEL MOVEMENT WITHOUT THE AID OF LAXATIVES AND STOOL SOFTENERS. I HAVE MY PERIOD ALSO PLEASE SOME ONE TELL ME THERE’S A BRIGHTER SIDE TO THIS HORROR I WAS FELLING SLUGGISH UNTIL THE EUS. I HAVE WORKED OUT MY WHOLE LIFE AND HAD ABS OF STEEL PLEASE TELL ME THEY CAN FIX ME, FIX ALL OF US I AM SAD FOR ALL OF US I AM SO SWOLLEN AND IN PAIN WHY DO BAD THINGS HAPPEN TO GOOD PEOPLE I AM ALL HEART, I DON’T WANT TO SUFFER I’M SURE NONE OF YOU DO, READING THIS IS SCARING ME, I WISH US ALL WELL PEACE DEENA
Thank you all for your comments!
Durga…I remember you from Careplace…that board just fell apart after they changed it to Firefly! I hope you are doing ok. I have found out that seeing Dr Sutherland In Minnesota will be difficult, if at all, due to insurance. I am currently working with my docs at the University of Cincinnati to get relief. It makes me sad when pancreatitis patients say thier docs tell them to “live with it”…It makes me want to scream!! There are treatments in this world that do help pancreatitis patients…we need RESEARCH, RESEARCH, RESEARCH!!! But that takes money, money, money!! I am supporting pancreatitis awareness as much as I can by sharing my story and also researching how I may be able to help raise money for research. I am excited to see my story has reached all over the world! If you have any questions, please feel free to email me at keke_1973@yahoo.com I would be happy to share. Also if you are on facebook…look up “My Powerful Pancreas~ Pancreatitis Awareness Project”. It is a support group I belong to started by a friend of mine. I am on there daily. There is a wealth of knowlege there. If you can…please support NPF and their research efforts. Again, thanks for the comments.
Blessings,
Keri Roberts
Hey Kerri!
My name is Ashley ,im 23 and ive been suffering with severe pancreas problems for about 8 years now.Ive had a million ERCP’s,cat scans,xrays,ultra sounds,colonoscopies, endoscopies, gall bladders gone(which was healthy too) you name ive had it. It is so weird that you said that your going to see Dr, Sutherland because my specialist just got me into him to in Minnesota.They want me to have a total Pancreactomy with auto islet transplantation. Its still in the trial basis so they want me really bad cause i don’t drink,smoke,I’m young,thin. Its a very frusterating disease, and it can get very lonely out there, because there is definitely not a lot learned about the pancreas. I mean until this new procedure you couldnt live without your pancreas,and you still cant unless you have the islet transplant too.Its a vital organ for sure, a lot of people dont even no what it does.As of right now im in and out of the hospital about every 2-3 months with severe attacks.So if i don’t have this surgery they told me that with age its going to get even worse and eventually the pacreas will shrivel up and just stop working. But there’s huge risks with this newer surgery so im still not sure what im going to do,plus its very very expensive and insurance will only cover part of it so ill have to do major fundraising if i decide to do it. But i would love to email or facebook with you if your interested. Your story sounds so close to mine id love to talk with you. Its hard to find someone to talk to about this, i mean people can try to understand but they really dont unless your going through it to. But if you dont want to chat i understand.I am on facebook. Good luck with Dr sutherland,and hopefully he’ll help me out too,its been a long road!And i have had no life what so ever so we’ll see if i get to get my life back!!Everyone keep your fingers crossed for me!
Ashley from Maine
Dear Keri, my name is Dusty and I have been living with a bum pancreas since birth. I feel your pain and frustration, we study and try things to get some relief and I KNOW we know OUR OWN BODIES better than the Doctors do, but you can’t get one to admit it. I have found I had alot more attacks when i was your age raising my 2 children as a single mom. I kept a diary of what I ate and what was going on in my life, then when I felt an attack coming on…You learn the subtle signs, look in your diary for the cause. I know for a fact you are hungry, but it hurts to eat, and you are nauseated, and some days it comes out both ends and you want to scream, don’t emotional upset makes it worse. I was 16 weeks in the hospital 10 hours away from my 3month old baby boy, whom my in-laws or ex hubby brought to see me. I wasn’t even allowed to brush my teeth with a dry brush I had ti use a dry rag. I wanted to turn my face to the wall and die; but the thought of seeing my daughter and my new son kept me going.eat jello, bland crackers, 5 times a day no caffiene or carbonation, and above all.. DON’T use anything with artificial sweeteners! The af swtner registers to your pancreas as 60times sweeter than sugar; it goes crazy! learnyoga,meditate,pray,whatever you have to do to keep your stress down. it’s your body listen to it. Also no nsaids they stir it up, raw sugar is better than white & honey is king! P.s I am 50 and they still haven’t figured it out; but I have learned to manage it pretty good, good luck and after 16wks apart my baby recognized me; but wouldn’t let his dad near him! BeBlessed….dusty
I was diagnosed with my first episode of pancreatitis on Christmas eve 2006, with many flare-ups, etc, until I was diagnosed with chronic recurrent pancreatitis a couple of years later. Sound familiar? In reading Keri’s story and the others to follow, I was amazed at how similar we all are in our symptoms and the treatment. I also have had every test known to man, my gallbladder removed (a perfectly good one!) and am now taking pancreatic enzymes. I have learned to LISTEN TO MY BODY as my best source of information, watch my diet and drink lots of water to move things around. Going vegan for 6 months, then progressing to vegetarian, avoiding most dairy and REALLY limiting fats has worked best for me. I also meditate and have acupuncture every two weeks. I found that massage exacerbates my condition, so have stopped that.
I was recently released from my job of 12 years (by the nation’s largest medical insurer!!) because of my condition and having to be on disability. Guess nobody there has pancreatitis! Pity they think only with their purse strings.
I don’t know if anybody else has had this problem, but Viokase has been taken off the market by the FDA. I was prescribed Pancrease . . . that kind of worked, but then, they took that off the market as well! Now I have been prescribed PancreaZe. That doesn’t work at all! Now my doctor is in the process of trying something else~! Goodness.
I will check out “My powerful pancreas / Pancreatitis Awareness Project” on facebook. Thanks for the tip.
Blessings to all of you that share this challenge with me! Dee J.
Kerri, thanks for your story. My 17 year old son has been admitted into the hospital for chronic pancreatitis. When he was 10 years old he was complaining of pain in the abdomen. I would give him milk because I thought he was hungry and he usually complained of the pain during the night hours. After many months of complaining of that pain, I decided it was to much, so I took him to the nearest hospital. While in the ER the doctor decided to give him medication for infection in the stomach. We were leaving the hospital when all of a sudden my son started vomitting all over the ER hall. The nurse came running and she had to admit him into the hospital once again. Finally, they told me my son had acute pancreatitis which couldn’t be treated in that hospital. He was sent to a nearby hospital and was admitted there. The doctors kept on asking me if my son had a drinking problem, my son was only 10 years old and these questions were really bothering me. I begged my son to tell me the truth whether he was drinking and he kept on saying he had never drank in his life time. Well to make a long story short, my son is 17 going on 18 in some months and his new diagnose is chronic pancreatitis and type I diabetes. It has been like a roller coaster ride for the whole family. Right now my son got admitted into the hospital probably for his 27th time. He have faith in God and hope everything goes well. God bless you always.
My grandaughter who is 10 is diagnosed with hereditary pancreatitis. Have any of the above people been tested for it? Having an accurate diagnosis is important in its management.You cannot accept a diagnosis of idiopathic pancreatitis without this genetic test first. You should have this test even if no other family members have it as in my grandaughter’s case. The genetic mutation can skip generations or can be spontaneous. Linda
Wow, Thanks again for all the replies! I am so thankful for finding others who understand yet it makes me sad for those who have to endure all this garbage!! Ashley…of course..I would like to chat!! I would be happy to. Again I want to invite you all to visit the “My Powerful Pancreas~Pancreatitis AWareness(PAW)” on Facebook. You will have to request to join. It is a really good group!
Like I said in my last post above, my plan to get to Mn and see Dr Sutherland is proving to be very difficult! I am still working with my docs at University of Cincinnati Pancreatic Disease Center. They are very competent and I am in good hands…it is just that they are very conservative and there are times I want to move forward with treatments and they need more convincing…so we just keep plugging along. Again, please…if you have any questions for me you can email me at keke73@cinci.rr.com or look for me on the FB board I mentioned. Blessings to you all.
Keri in Ohio
Keri -
I have an appointment with Dr. Ahmad at UC Pancreas Clinic next week. I have never been there before. What do you think of the clinic? I’ve had chronic abdominal pain for years and found out in October 09 that I have chronic pancreatitis. I had my gall bladder removed, all the MRI’s, MRCP’s, EUS, ERCP’s etc (I’m sure I’m missing some tests in there somewhere). I’m hoping they can give me a TREATMENT there that will help with this problem, even if it is a total pancreatectomy. I’m ready to get on with my life.
Thanks,
Chris