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Old 12-01-2002, 12:23 AM
bowlergrl2000's Avatar
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Pancreatic Disease

Anyone out there have Pancreatic Disease?
I have had it for 14 months now, and not fun! No one in my circle of friends or family have it, have had it, or even knew what it was until I was the "Lucky" person to get it! I would love to hear any feedback and procedures that you have had done and how you are handling it on a day by day basis.
I'm to the point of a 10 percent transplant very soon here, and would just like to hear about any stories you might have.
Any information would be great, and just to talk about it to some one that understands how it is.
Thanks!
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Old 01-04-2003, 10:14 PM
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Pancreatic Disease

Bowlergrl,

Was surprised to see your post. I am sure there are many people who have "Pancreatic Disease" but, like you, we have not found a support group on the internet. The closest I came was using the Type 2 Diabetic Support group. Most diabetics have trouble with their pancreas.

My husband has lost over 60% of his pancreas. This was due to a gall bladder blockage that caused the acid from his stomach to back up into his pancreas and thereby literally eat it up. This also caused him to become a Type 2 diabetic. He is not insulin dependent at the moment, but possibly will become so in the future.

It is extremely hard to figure out his diet. No one seems to know with any certainty just which foods he can tolerate. Occassionally he has to go on a liquid diet for a day or so because he starts having stomach pains and nausea and vomiting.

He is 57 years old and always been in great shape. This past year has been quite devastating for both of us. It is especially hard on him because he has always been in such good health. Evidently he has had gall bladder trouble that was overlooked for several years. (He suffered from a severe pain in his shoulder that doctors did not recognize as early gall bladder problems).
He has never been more than a social drinker so alcohol was not a problem. (Alcohol seems to be the blame for most pancreatic problems).

I would love to know what kind of diet you are following and the problems you are having.

Thank you and God Bless,

Foxy
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Old 01-04-2003, 11:20 PM
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pancreas

HI Foxy lady! Thank you! One thing I didnt mention in mine is that I am 46, and when I was 21 I had my gall bladder removed due to probs with that then.
Whay my doc said was, patients with diabetes have bad pancreas, but patients with bad pancreas dont always have diabetes. Im one of them that do dont have diabetes, but I will be on insulin when I have my transplant.
What they are going to do now is remove 90 percent of pancreas and transplant the other 10 percent. I end up in hosp at least once a month from severe pain that I can not get controlled at home. I am on Oxycontin, 60 mg's a day, and vicadin for inbetweeners. By inbtweeners, thats up to me cuz I have control of my pain to a point to know how much I need to help it, otherwise I just go to hosp and get on morphine for 2 or 3 days until it calms down.
As far as diet, there is nothing known to me that works or does not work. Its just how I feel like eating from day to day. Like spicy foods are not a prob one day, but then the next day they might be.
I have lost 50 pounds in 9 months, so it does take its toll. Just to let you have an idea, I weigh 90 pounds on a good day!!!! I am always hungry, but 2 or 3 bites into the meal I am full, so not alot I can do about that. I do take Viocase8? I really cant explain what it is, but its suposse to help me digest food better, and after 12 months, I really dont see any help in it at all.
As far as nausea and vomiting! Thats my middle name so to say!!! Its just a given factor if I do eat to much. My doc has told my hubby and I that my stomach is smaller that my fist, so thats why it cant take in too much at one time. So I try to eat a little bit all day long, as far as snack, and I tell ya! My friends are sooooo jealous cuz my snacks are fudge, brownies, puddings, do nuts, ice crea, etc!!!!! I can eat what ever I want and not gain weight!!Im just trying to follow your letter and comment so if I rattle on here, thats why! Pain in shoulder yes!!!! For gall bladder! Like I said, I was 21 years old then and that was 24 years ago, they were not as "up" on that as they are now, and also pain in upper back, plus the pain in the "stomach" area and as far as alot of vomiting to relieve the pressure. I had my gall bladder removed 2 hours after I had given birth to my first daughter so I went through labor with a stomach pump hooked up! That was fun! Than goodness she was a quick delivery! Yes, no one ever really associates shoulder pain with gall bladder, but that is a symptom! Tuna fish was my downfall , as that made my upper back hurt and always thought that was strange! But I had a very good obsrtician and for some reason he figured it out! Since I have had it removed, no probs there.
The pancreas prob is a result of a doctor error. I was having a very simple, non cancerous tumor removed from my uterus and the anesthesiologist gave me enough morphine for a 250 pound male!!!! Even at that time, I weighed about 135+ pounds, so it was still obvious that I wasnt a male nor 250 pounds! I would like to say that he is no longer in practice! My pancreas shut down during the surgery so they had to stop and deal with that at the time. So needless to say, the AMA is covering all my medical expenses, but of dear, Im the one that still "pays" for it, as far as pain and I have procedures done once a month to put in and take out stents in my pancreas for it to drain.

This is a very long mail here, if you would like to hear some more of what I have learned about this very "touchy" organ, please feel free to email me @ [email protected].....I would love to help in any way I can and hear some of your input too! Thank you for writing me! Would love to talk more!.......Nancy
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Old 01-05-2003, 12:13 AM
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Pancreatic Disease

Thank you Nancy! Have written to you at your other address.

Foxy
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