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Is there anyone living without there pancreas? My husband had his completely removed alittle over a year ago. We have had nothing but problems. He has constant diarea, constant pain after he eats.He's a diabetic. It's been as low as 8,and as high as 400. Doctors tell us hes the only patient they know, who has no pancreas? That alive any way. Were looking for a support group of some kind , to help us. Is any one out there who could help us learn more about this, or share there story. thanks

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Hi, I can't help you, but I have read one other story on this website about someone living without a pancreas. She had pancreatitis for 11 years I think and she said that having her pancreas removed was the best thing that happened to her. I don't remember what her name was, but I know an easier way to find her. Type pancreatitis into your topic search. You will get 80 letters. I think her letter is in the first batch of 10. Hope I could help.
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The woman's name is Lisa Atwell. She is a nurse. She has a blog on yahoo.groups that I will check out after. Hope this helps.
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although my pancreas was not surgically removed i had an acute necrotizing pancreas attack that destroyed my pancreas. In CT scans it is a mass of scar tissue and cysts the duct was completely destroyed and it is not producing insulin. My first year was a complete nightmare at adjusting. I have learned to control the diabetes with exercise. With the right enzyme count and foods i have very little pain now when eating. if i can answer any questions i would be happy to. Rich
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my son has no pancreas, he had a partial pancretectomy at 11 days old then they removed the rest of it when he was 21 days old. He is now 20 on the 01/01/09, he takes 5 x Creon Forte' with each meal, 1 x Creon Forte' with a snack, and is on 4 shots of insulin per day. When he was a baby he was on pancrease then went onto Creon, then Creon Forte' for his digestion. He has small stature but otherwise very healthy. He does get diarrahea occassionally if he misses his Creon.
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I don't have a pancreas. I got sick in October of 2006.
I had a psuedo cyst on my pancreas that blew up my pancreas. I had several surgeries and was in the hspital for one year. I survived.
would like to know if this has happened to anyone else.
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I have been very sick for 20 years, and last year I had a cyst removed on my pancreas, complications ensued and I fought for my life for six months in the hospital. The doctors threatened to remove my pancreas if the infections did not stop. I did not drink nor smoke. The cyst was non cancerous and was in the head of the pancreas. I also have Porta Vein Thrombosis and many other problems. Talking with others that have similar health issues helps me. It helps me understand what the issues arew and how to deal with them. I am a 53 year old male. I have been on disability for 15 years, and was too sick to work way before I got disability.

I know this thread is old, but it looks ok to keep it going. Pancreas info forums are less plentiful than most other health problems.

I am in California
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hi i had my pancreas and splean removed in feb 2008 i constantly have pains and bowel problems too, i was also told i was the only person with this case but i was only 19 years old my pancreas had grew to the size of a watermelon.

if you want to talk
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You say you have pain and bowel problems? Do you take pancreatic enzymes? I have had my pancreas removed and I feel great! No pain at all, and I get around just fine. Of course I had to recover from the surgery, but the enzymes help me to digest my food and get the proper nutrition.
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I was 21 when I had my pancreas completely removed. I am in clinical studies because I also had an auto-islet transplant, which they took my cells that produce insulin from my pancreas and injected them into my liver. I was diabetic for about 4 months, but now my liver is producing insulin on its own. They don't know how long it lasts though. I take 5-7 pancrelipase pills every meal. On top of my pancreas being gone, I also had my spleen, appendix and gallbladder removed. My surgery was almost 3 years ago now, but ever since the surgery I have had multiple problems. I have experienced severe chronic pain in my upper left quadrant of my stomach, my stools are diarrhea and fatty, I get so sick when I'm having a bowl movement that I feel I may pass out sometimes. I always feel nauseaus dizzy. I am in pain management and they have yet to come up with anything that works for me, mainly because nobody where I live has ever heard of my condition. I still have nurses at my hospital that argue with me and tell me I can't live without my pancreas. I am only 24 years old and unemployed (which is horrible because I just got through nursing school), I am trying to get on disability. My doctors have pretty much given up and I don't have the funds to get an out of state second opinion. Is there anyone out there that is in this situation or something similar? And if so, does anyone know of anything that helps get you to live your life?
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I am now 30 years old and mother of two children, after first pregnancy when my daughter was 9months and i was 25 i had a itchy rash which gave me jaundice because i had a tumour growing in the head of my pancreas which had cut off my bile duct i had most of my pancreas removed my gallbladder and small intestine at St Thomas in London April 2005 i was in intensive care for days operation was very painful and recovery was hard with a toddler at home, i am not diabetic yet and tumour cyst was non cancerous but bigger than cricket ball, i was told to live my life as normal but have very fatty stalls tummy pain tiredness but grateful to be alive! then was told if wanted another child to go ahead got pregnant 2 years after op, pregnancy was hard developed thyroid trouble which looks like with the size of tumour been apparent foe long time never picked up on, child was healthy and normal but ended up having cancer of thyroid also had thyroid completly removed and had radioactive treatment now all clear after 2 years of struggling with medications etc, but still having trouble with all medications creon now makes me sick so always tired, tummy pains bloating when eat fatty stalls and lack in all vitamins as can not asorbe any food proberly. Life is hard as full time mother with health issues, i was wondering if any one else has had both problems or think maybe hormones are a cause like to hear other stories so i know not only one trying to live life long term medical problems which no one seems to know about! Also worried how the rest of my body will cope with internal problems as only 30. :-(
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hanks wrote:

Is there anyone living without there pancreas? My husband had his completely removed alittle over a year ago. We have had nothing but problems. He has constant diarea, constant pain after he eats.He's a diabetic. It's been as low as 8,and as high as 400. Doctors tell us hes the only patient they know, who has no pancreas? That alive any way. Were looking for a support group of some kind , to help us. Is any one out there who could help us learn more about this, or share there story. thanks





I had auto islet transplant as well almost 2 yrs ago plus I had 3/4 of colon removed. I also had spleen,gallbladder,appendix,and part of small intestine removed as well. I take Creon-24 enzymes with meals usually 4-6 pills and I inject 1 shot of lantus long lasting insulin in the morning 20 units. Although I am 20 times better than I was. I was diagined whith chronic pancreatitis 4 yrs ago and it totally ruined my LIFE. I had no quality of living couldn't eat,sleep,work,walk or anythign and lost over 40 lbs. I used to be 200 lbs but by the time I was in hosp in Minn after my 1st surgery I was 137lbs. My life now is still challeging as I still have my GOOD and BAD days. when I do have my BAD days they are really BAD extreme stabbing adominal pain that won't go away throwing up,nautious all time no energy and basically not mobile. My Dr told me if I didn't get surgery done I would have cancer within 3 yrs so to me even though my life is very complex and am still OOW (dissabilty) I would have done it again in a second. I have 2 boys at home and 2 on the way so to me that is a blessing from GOD!!.....Try speaking to your Gastro to see if he can put you on something for diarea and something for pain that will help relax stomach. I also take calphate syrup before meals and liberax helps coat the stomach after eating plus protonix. GOOD LUCK remember you are not the only one so feel free to ask any questions?
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My sister has no pancreas. She had an IPMN tumour and had her pancreas, gall bladder, duodenum and some intestine out. She now has brittle diabetes which is hard to control and she has to take Creon to digest normal food. She is very frail and thin but she battles on despite the NHS not having any experience of her condition. The surgery was carried out at Queens Nottingham but once recovered they cut you loose with not much support. The diabetic clinics do their best but really this group of people with no pancreas really do need a support group to share experiences.
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There is a very good forum for pancreatitis sufferers that I am on and some of the poor ppl there have no pancreas due either to surgery or the simple fact that the illness itseld has completely digested the pancreas. Type in pancreatitis forum uk and u will find it. You don't have to be in the UK. I am in Australia and there are also Americans, Japanese and many different nationalities. It is a wonderful forum with caring ppl that understand. Cheers.
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My mother has been living without a pancreas for 9 years. She is now 85 years old and it was removed because she had pancreatic cancer. She takes pancrease pills and of course her insulin and is doing fine. She has lost a lot of weight and is weak but she is happy and living. Don`t loose faith it can be done.
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