is there anyone living without a pancreas?

Yes, my wife was born without a pancreas. She had her gallbladder removed around age 50, shortly thereafter she developed diabetes and had constant diarrhea for about a year. After years of testing, it was learned that she did not have a pancreas, the islet cells normally found in the pancreas were found on the slides of the removed gallbladder. The pancreatic specialist at Tulane Hospital in New Orleans said they were aware of about 10 to 15 living people in the world that were born without a pancreas. She also has a hard time controlling her blood sugar.

Hi, my name is Neil. I live in glenfield, on the North shore of Auckland, New Zealand. In April 2006 my Pancreas burst due to Gallstones. I was rushed into hospital and was operated on within half an hour of arriving.In the 25 months I spent in hospital I had 15 operations on my stomach. I also lost my spleen and became a Diabetic. I have to check my bloods 4 times a day and inject myself with insulin twice a day. I am also on 29 pills a day which keep me alive. I have also had 7 heart attacks and died 5 times. There is an article about me on the net www.man who dies 5 times praises hospital. I have hernias across my stomach which can not be removed because of my heart and the fact that there is no stomach tissue to work around. I spent 40 days in ICU where I went from 110kg to 50kg. I had to learn to walk again and to talk as I had a trachea in, which I found a horrible experience as I could not communicate. For the first 6 months I had a suction dressing on which drains all of the fluids out of your stomach and draws the skin back together to close the wound as there was not enough skin to suture it closed. In the past 5 years I have spent more time in hospital than out. The surgeon who did all of my operations, the nurses and my wife and family were all a great support throughout.


not enough skin to suture.

Hello , I recently on 10/18/2011 had a total Pancreatomy because of multiple large calcification stones, Spleen,Gallbladder, Deudonum,Small Intestine (partial), small stomach area also removed. I had inherited pancreatitis (Genetic) and complained about abdominal pain as a child (5 yrs.) and didn't know I had problems until I was 17 when Doctors (6 different Dr's) all concluded nothing was wrong with me until I had a colapse right lung and the left lung was about 1/4 filled with pancreatic fluid. I was told I needed to have a pancreatic duct surgery. I refused because I was not only scared of surgery but I felt better after becoming vegeterian and taking natural supplements. It wasn't until I was 35 that I began with pain all over again. I had a mrcp done and felt worst. I went to different Dr's, urologists for removing the stones but were to large to break down and remove. I went to Gastroenterologists and they rx Zenpep Enzymes (which has helped me with digestion otherwise I have constant diarrhea and I've increased the dose after 2 yrs.) , pain killers and it helped somewhat. I then was referred to various surgeons some that had no experience! I had to find a qualified Surgeon whom could work with me do to my religious belief I refused any blood. I finally found a qualified Surgeon willing to work with me. My surgery took about 9-10 hrs. but felt very weak afterwards. My heart was beating very fast the same day of surgery and I was told I was at risk of having a heart attack. I stayed in the hospital for two weeks. I should of stayed longer though. I ended up not being able to hold down any food because I was constantly nauseous. I didnt know right away but a month later that I had a liver infection caused by surgery. I was then hospitalized two more weeks in 12/2011. I felt much better as soon as they placed a drain in my liver, I was also given TPN through a picc line because I had lost so much weight (103 lbs) and was very weak, . I was sent home from the hospital after two weeks and rx's antibiotics through the picc line and the liver drain for about a month. It has been hard to overcome everything I went through but if I had not went forward with the surgery I dont think I would be here with my beautiful children and loving husband. I am now a Type 1 Diabetic and currently take Enzymes. I gained 10 lbs (113 lbs) I feel much better although I'm still adjusting to counting my carbs but I was told by my Dr. that I'm learning pretty quickly how to calculate my insulin intake. I do get high numbers but usually because of an infection caused by uti's. I take antibiotic's and the sugar's regulate. I do get low's once in a while in the middle of the night but what helps is having an alarm to remind me if I feel it's going to go low right before going to sleep. I have learned to adjust to being diabetic but it sure beats everything I had to go with the pain pills. I'm pain free and no longer take pain pills. I don't know why but now I'm loosing a lot of my hair. I asked the surgeon why and he said it usually happens after surgery and that taking multivitamins should help. I just started taking vitamins and have noticed less hair loss. I cannot say to anyone to go forward with a surgery because everyone is different. Everyone has different situations. My own brother has chronic pancreatitis but I havent suggested surgery because I know how difficult it has been for me. I'm so Blessed I had my parents, family and friends support along with their loving prayers! I cannot Thank them enough for being their for my family and I. My surgery was at a Kaiser Hospital in Clackamas, OR. Dr. Leger whom I also Thank. Most and for all I Thank Jehovah for holding my hand during everything I have been through. Many Blessings, CG

CAN ANYONE GIVE ME SOME INFO REGARDING MY WIFE'S SITUATION. HAVING BEEN UNWELL FOR A FEW MONTHS, FOLLOWING AN

XRAY FOLLOWED BY A CT SCAN IT WAS CONFIRMED THAT HER PANCREAS HAD DISAPPEARED. THERE WAS NOTHING LEFT OTHER THAN A SMALL STUB OF APPROX ONE EIGHTH OF AN INCH. SHE HAS NOT HAD ANY OPERATIONS TO ASSIST HEER WITH THIS PROBLEM.

SHE IS NOW TAKING 30 HIGH POWER DRUGS EACH DAY AND HAS NOW STARTED TO GET EXTREME PAIN IN HER BACK WHICH IS MOST

DISABLING. AT A RECENT MEETING WITH HER CONSULTANT HE TOLD HER THAT THERE WAS NOTHING ELSE THEY COULD DO FOR HER. MY SITUATION IS, AT PRESENT I AM NOT LIVING WITH HER AND SO AM ON THE OUTSIDE LOOKING IN AND GETTING VERY LITTLE INFO FROM MY DAUGHTER. I WOULD APPRECIATE ANY INPUT FROM SUFFERER'S OUT THERE ABOUT THIS AND WHAT I AM I GOING TO HAVE TO FACE UP TO IN THE FUTURE.

THANKS.

Duncan burge.

Living without a pancreas- yes it is possible.  I had mine removed 23 years ago after living in a hospital for 4 years with pancreatitis and 4 pancreas surgeries.  I had not been allowed to eat anything for 6 months - was dependent on hyperalimentation.  they told me I would be that way for the rest of my life (although it was expected to be short).  I decided to take my chances and have it removed and went for the experimental islet transplant.  Unfortunately, the transplant did not work because my pancreas was already so damaged and only had 1/4 remaining, but I lived.  For the next 12 years, I had constant hospitalizations for obstructions, blood clots and losts of pneumonia.  I kept saying it was the enzymes that were causing my obstructions, but they said I could not live without them.  Well, 14 years ago, I quit taking ALL enzymes and I have done wonderful!!!  I stay away for eating any type of fat because I obviously have no ability to digest fat and must eat a lot of carbohydrates to keep my weight up (and i am quite small at 115 pounds,), but I now have a wonderful life.  Yes, my diabetes is very difficult to control.  I have an insulin pump and check my sugar every 2-3 hours.  I get no warning of highs or lows and my sugar can be 600 and I do not have clue, or it can be 30 and I have no clue- that is why I check it so often.

I lost my pancreas in 1994 because of gall-stones..I took the enyzmes for two years hated them. Doctors told me I have to take the pills but, I have no insurance and they costs over 300.00 a month. I stoped taking them15 yrs later and I am still here.

i had my pancreas removed 13 months ago with cancer, I also had my spleen and bile duct removed at the same time. I also have trouble controlling my blood sugar levals but I am very sensitive to insulum which doesn't help. i also had trouble with diarrhea untill my consultant put me on creon tablets i take 3 every time I eat and it does control the problem.

Hi I do not know how long ago you have left this, but my husband is living without a lot more than just his pancreas. He too has had many health problems and had gallbladder, spleen, lots of his intestine and his pancreas removed in several surgeries. I too am looking for a support group for him and me as well. I hope this finds you with a healthy husband.

Dede

I have been without a pancreas for 21 days. Take insulin 4x daily and Creon pills ( usually 3 with every meal) . Hit probably 100 golf balls over the weekend and today helped my wife spread 5 yds. of mulch. Learning very quickly the lifestyle of a diabetic.

Larry from Indianapolis

I'm not sure if this convo is still ongoing but I am going to try.  On June 5th the doctors will remove my pancreas, gallbladder, duodenum and reroute my organs.  It's called the Wipple and I am scared to death.  My doctors tell me that they have done a quality of life study for patients who have had complete pancreadectomy and their life is no different than any other diabetic.  Would you agree or disagree?  Anyone want to share their experiences with me.

your pancreas is obviously working because it is making insulin. Without a working pancreas a person is on about 22-24 units of insulin a day.

Rich, your pancreas is making insulin. Good for you! A person without a pancreas needs about 20-24 units of insulin a day to survive.

Thanks to all you guys, I realize I am not taking near enough Creon.  RX says 1-2 Creon 24 with each meal and 1 with a snack.  I'm doubling that starting NOW.   I'm 55, got juvenile diabetes at 14, 2 kidney transplants in 2002 and 2007.  Pancreas transplant in 2009, which began failing or rejecting (they didn't do biopsy so who knows which) last August.  Turns out birthday pancreas died when I got the transplant and now transplanted one is totally dead too.  Who even knew that could happen?  Docs told me transplanted one would make insulin and original pancreas would still make enzymes and pancreatic juices.  This whole bathroom thing has me really depressed.  I'm late every morning to wherever I have to be.  I know we all know what that's like.  I'm so used to the 6 shots a day and like 10 blood sugar checks.  After 41 years it's like brushing my teeth.  I have to tell you the 2 years and nine months the transplanted pancreas worked were the best years of my life.   Kudos to all of you, I feel like I'm not alone.  

Sheila, how are you doing?

hi my parner is in icu at the mo after suffering a pancritas attack, they say he has lost his head and body at the mo he still has his tail left and is haveing it cleaned and drained daily please could u give me some more information about this if u can many thx