Coping with discouragement?

Pancreatitis
#1

Hi folks,


It’s supportive to find other people who are going through what I have. I just had my second bout of acute pancreatitis (hospitalized for seven days) – the first one, six years ago, was related to a gallstone and my gall bladder was removed.

This one comes with no explanation.

I do not drink at all, ever, my weight is fine, my triglycerides are absolutely normal and my diet is high on the healthy scale. So I’m left with idiopathic pancreatitis, a terrifically discouraging diagnosis.

Is anyone else in the same situation and how have you been able to change your attitude to a positive outlook? Just returned from the supermaket and realized that I will apparently now also be limited to a few foods.

#2

I have had ideopathic pacreatitis now for over 10 years. Mine has progressed to chronic pancreatitis. I am wondering if you have been tested for being a carrier for the Cystic Fibrosis gene? If you are a carrier of the gene it can be a cause for your pancreatitis. FYI.

I live with multiple health problems and chronic pain. I remind myself when I am in severe pain or having a pancreatitis flare that it means that I am alive. The pain and sickness mean that I am not dead, and I should be… my lipase went above 10,000 3 times. So I try to be grateful that I am alive. That what I have is not terminal (like many forms of cancer or AIDS) that I simply get sick for a while but then I do recover.

I know that it sounds like a lot of platitudes but these are the things I tell myself. This is how I stay positive. I know that an acute flare sucks, but it has been 6 years since your last flare. Be graeteful, I have been in the ER 12 times in the last 12 weeks for this. I am not trying to compete with you just trying to point out it could be worse.

Some suggestions - get your bile ducts checked for blockages or shrinkage - this can lead to pancreatitis. Also, cut back on fried/fatty foods. The recommendation is 60 grams of fat or less per day. (Personally I had to cut back to 30g or less per day).

I hope that you are done with pancreatitis and never suffer another bout. I hope that you boune back quickly. Be gentle with yourself.

#3

I have dealt with recurring ideopathic acute pancreatitis for over 10 years. One of the great things about this website is that you will get to “know” others with the same basic diagnosis. I have learned the following from this experience: Drs. do not always understand pancreatitis and most do not understand nutrition. You may learn more about diet on this site. Basically low fat/no alcohol/keep hydrated. Have a strategy to deal with pain. I have a Belleruth Naperstack cd on pain management that I plug into my walkman each time I experience pain. I also rely on pain meds. I find this combination helps me deal with pain. If the pain is real bad/unbearable I head for the e.r. and bring my file cards with each pancreatitis episode and each procedure noted on it so there is no question re. my legitimate need for pain meds. I am lucky to live in a fairly small community with electronic medical files so they know I have pancreatitis. I remind myself that I am not my pancreatitis…I have learned to enjoy the good days. And I have many good days. This site will acquaint you with many who suffer each and every day…Find a good dr. who understands pancreatitis and is willing to get to know your situation. Look on line (pancreas foundation) and learn about pancreatitis. There is lots of good info in many places (mayoclinic.com) You will find good support here. I wish you pain free days.

#4

I also have idiopathic pancreatitis which resulted in chronic pancreatitis. I keep my fat grames under 20 a day. I also cannot tolerate dairy, soy or meat but I have found many low fat recipes to help me enjoy eating again. When my friends have hamburgers, I've found a veggie burger that I enjoy, that way I don't feel deprived. I did invest in a Vitamix blender so I can do smoothies when I hae a flare up. It also has lots of recipes that are low fat that I can make to eat.

As for staying positive, find someone else and help them. I am blessed to have a good doctor and family. My husband is supportive and does not make demands when I am not feeling well. I am able to manage my pain with phenegran so I do not take any painkillers. WHen I begin to have symptoms, I go on a liquid diet only. This is a liquid diet made by Nestle. Them I progress to semi solids and finally back to solid foods.