is there anyone living without a pancreas?

I had my pancreas removed August of 2011. AND I wasnt told much on how to live without the problems i have. Most doctors are clueless and seem to do things that only aggravate it or dont know what to say at all. I had a doctor in the emergency room look at me as though I was crazy and said I wouldnt be alive talking to him if I didnt have a pancreas. I was so scared because I just moved to this town that only has a small walmart and you have to travel one hour one way to even go to the doctors. I recently had a colonoscopy and they found pills stuck inside me 50 or more they said. I am going to have a scope soon because I am feeling that stuck feeling when I eat again. Here we go!!!!!! I so frustrated with this issue because I thought I was gonna finally have a life again without the pancreas divisium and pancreatitis. I take the creon and have a pump so I am doing evereything. One question I have is anyone else having issues with tooting alot and the smell. I have days that I wont go anywhere and I wont even date because of it...

haha. I totally quit eating fruit except bananas, which for some reason don't give me all that gas. I steam or blanch all vegetables. I think fiber does us in. Yes, doctors are clueless. Thinking about it, I quit eating fruit way before my transplanted pancreas rejected so maybe it's a diabetic thing. I think I quit eating any melons in my mid 20's, have had diabetes since I was 14. Wendy, you seem young, are you a candidate for a pancreas transplant? A lot of the centers are doing pancreas only transplants. Mine only lasted 3 years but they were the best 3 years of my life! But then my body went on a rejecting rampage and even rejected my birthday pancreas exocrine system. They said they had never seen that before. Whatever . . . story of our lives.

the gas could be from not digesting fatty foods - not sure though - I DONT TAKE THE CREON PILLS , the creon pills made me constipated . I have less then 10% of my pancreas. I'm on a insulin pump and doing good with that . If your food is not digesting that's why you have the pills stuck . Maybe you should try a very mild diet for a few weeks and see if you can give your stomach a rest. Sounds like you need a doctor that has gone thru this before , there's not many of us out there living without a pancreas. ( be your own advocate , research ) Mayo clinic good reference site

Mayo is doing pancreas only transplants! They don't want me though. I've had 2 kidney and 1 pancreas transplant so too much scar tissue and vascular clips. So girls, am I the only one who has trouble keeping on weight?

I take 2 24,000 creon tablets with every meal. When I dont take them I know because I get so sick. I was doing much better however I feel like I have another blockage which you can have where the half of your stomach is attached to your intestines. Didnt know that until recently so going to have that checked on the 19th of next month. I have found that everyone seems to deal differently with this issue however. I have good days and bad days. since I have had my whipple surgery and complete pancreas removal. The pain is still there constant and I thought it would go away with the surgery.

I have not found a doctor here that I would be willing to let my life in their hands with transplanting. I am 50 and that means I am probably too old. LOL I didnt know they can transplant after your organ is gone. The doctors here look at me as though I have some strange disease and give me no sense of hope but feed me with more pills. I am so tired of the pills that I have put my foot down recently and might be loosing a couple doctors because of it. thanks for your reply. I have lived on fruit and am a vegitarian for years dont know if I can give them all up.

WOW YOU HAVE HAD YOUR SHARE OF PROBLEMS ! I read these stories and feel very glad to be where my health is. I have no problems with keeping on the weight which my doctor is surprised. I need to loose about 15 pounds. I have lots of trouble with blood sugar lows so I eat a lot , I do exercise and have no problem with that. When I exercise I have to turn off my pump or I go really low very sensitive . I wish you both the best in your life with this . I started researching all for my self. If my doctor gives me no answer and just find one. I will get rid of my doctor if he doesn't help me find the answers but I'm really lucky I have a good and caring one. When I first lost my pancreas I was in the hospital for almost three months and then home with a hospital bed and a feeding tube for about 4 months and my doctor came to the house to see me. (LUCKY ME) see how he cares. Its always good to have a great support

FOR SOME REASON IT POSTED UNDER GUEST !! MY REPLY UNDER GUEST

My pancreas was removed in August of 2011, Seems like yesterday due to the fact I start to feel better and then I am down again. So tired of the roller coaster. I am on this site to see if I can find help or suggestions myself I was bprn with with pancreas divisium and in my early 40's I started having pancreatitis. The first time they went in to look I had 7 blockages and was hospitalized for 3 weeks. I wouldnt wan to wish this on anyone. Such a painful desease.. Today I decided to change my life and find others like me and just try to get encouragement from one another. I cant believe you still work. I still have to take naps LOL

I have had my pancreas removed in August of 2011 and I too have had trouble finding a good doctor who can help me with issues I am having. I am searching for someone like me. Maybe we can encourage one another. I had a doctor in the emergency room tell me that I wouldnt be alive talking to him if I had no pancreas. I was so scared.....

when you say you take pancealipase and that you take 5 per meal what miligrams are these. I take 2 24,000 creons per meal. But I am having alot of problems.

ok this is my 3rd and final try to answer this. This blind girl is having a tough time here. It keeps not going through. I guess you've noticed that most people on here have some pancreas function. It's amazing what just 10% of a pancreas can do. So we don't have an exocrine or an endocrine system. I really don't feel like I'm living most of the time, just existing. Had to go on disability. BUT, these things are helping. Superior Source and a few others make sublingual vitamins. I'm betting you are deficient in at least a few. My doctor put me on 1000 mcg of sublingual B-12 and I found a D with K, remember without a pancreas we don't assimilate vit A,E,D and K. My small intestine was partially transplanted and rejected so I don't assimilate B-12. I found a women's over 50 multi-vitamin under-the-tongue but it gave me the runs, it has 5000 mcg of B-12 which may just be too much for me. Also Superior Source. If your poops are beige and the consistency of soft serve ice cream or creamy peanut butter and endless and airy - you need more Creon. If I grossed anyone out, well . . . you have more of a pancreas than me and the rest of you know what I'm talking about. Are you taking Creon with snacks? I have to take one even if I have coffee with cream. Like Gale Ann recommended I think it wouldn't hurt to try a milder diet until you get the blockages thing eased up. I cried when I read about you being in pain, jeez, as if the rest of this nonsense isn't enough. Thinking of you, keep fighting soldier! chris

Lucky you is right! You must not be in the US, house calls?!!!!!! My doctors look at me like, well, I give her a year before she croaks. I've always been like Tommy Lee or Mary Tyler Moore thin but since this exocrine rejection I am too thin, even by Los Angles standards but I have held steady at 110 for a week or so now and transplanted kidney is fine so I'm grateful for the health I have and jealous of all these people with love, health AND money! What's up with them?

Hi my name is ivonne and my husband had the whipple procedure wich is the removal of the pancreas and sence them our life has been real difficult he is a diabetic and he take a lot of medicine for the liver ,the stomach enzynes and his uncontrolable diabetis so if you find a place please let me now ,we live in virginia thanks

Ivonne, becoming a type 1 diabetic is difficult for everyone. A + B does not equal C, it may one day and the next it won't. There are good diabetes educators or diabetologists or endocronologists in every even half way big city. If he's not using an insulin pump he would need a sliding scale for his blood sugars and when and how much insulin to take. It's important to get his blood sugars in order to heal and feel better. Do I ever go under 70? Yes. Do I ever go over 200? No. I check my sugars a lot and treat accordingly. Buy some glucose tablets if he gets low and is not at home. It takes a while, but to me, that is the easiest part of not having a pancreas. It's been a year and I can't get this enzyme thing in order. I'm realizing I need way more enzymes than the doctor suggested.