Hi Barbie,

Welcome to the group. Which state do you live in? Depending on where you live, you may or may not have access to some really great doctors.

I live on the Space Coast in Florida and we do not have good pancreatitis docs here. They had to send me to Orlando just to get an EUS done :(

If you tell me where you live I can do a search to see if there is a hospital that specializes in pancreatitis near you. If you live in Minnesota, I know there are great docs there and if you live anywhere near a Mayo Cllinic, they too have great pancreas programs.

Welcome Barbie. Many things set mine off, so not sure the actual cause, but steroids will set off an attack for me. But it is not the actual cause of mine, as other things sets it off too. Diet, codeine, morphine, and so on. I wish you the best of luck as you try to figure this disease out. Not an easy one to understand.

Thanks. I live in Ft. Lauderdale. At the time of my attack, I was 10 days short my health ins. to begin, (except for the state/county help), the GI dr. at the 'cliinc' wasn't very good at all. In fact when I was hospitalized with the lipase at 1000, I was only there 4 days, and he never put me NPO, I was on a 'reg" diet (an obvious oversight) had a fever, and no antibiotics given. I was released as soon as my lipase went down, but the fever was still high when I got home. 3 days later I had to call an ambulance at 3 am for severe pain - I ate a small piece of beef, which I didn't know was taboo, and doubled over with pain, vomiting and severe diarrehea. I was taken to a different hospital, (closer) admitted for 2 more days, b/c my blood pressure was dangerously low. Anyway..the new dr. told me to eat anything i want, (just low fat)and doesn't seem to know alot about it.. Sorry for rambling, I'm just glad to talk to people who understand. Thanks again for the replies.

Hi Barbie,
I have had a hard time figuring out what triggers my attacks. I found another website and it was suggested to me to keep a food journal on my smart phone. I don't know if you have one but if you do you can download an app.
I have also been forced into a baby food diet. Now I can't even eat real food of any kind without causing my horrible spasms, but if that is all I eat all day I seem to do better.
I am also trying to find a dr to help me learn why I have these spasms. The pain is bad enough to live with I don't understand the spasms at all.
Anyway, I hope that we can all help you figure some things out.

Hi Barbie,

Do you have good insurance now? If so have you looked into new G.I. doctors in your area?

You need to get a second opinion.

Lipase is the enzyme that helps in protein digestion, eating beef was a really wrong thing to do. Yes, you should have been NPO at first, then clear fluids and then progress to a low fat diet.

How was your Amylase? Your triglycerides?

I would not risk anything that is "risky" and I certainly would not drink with your medical problems.

I think many of us just go to clear liquids as soon as any pancreas related symptoms show up. At least I know giving my system a rest for a day or two helps.

You do need to eat protein but you need to have protein that you can easily digest, beef would not be good.

For me when I am not doing well, I get a roasted chicken and make soup out of it. Cooking it a long time in the soup helps break it down. And sometimes I puree my food to break it down further.
Eating very small amounts through out the day helps by now over taxing your digestive system. Sometimes I will stick to a fat free plain yogurt or a greek yogurt which has protein in it.

Different things work for different people. It's kind of like trial and error. But you do need to get a different doctor. The doctor you wrote about seemed to have given you very bad advice.

Hi all...yes, I do have insurance now, i have an appt. with another GI, thankfully. I don't drink at all, but I agree that the dr. who advised to have a glass of wine a week, was giving poor advise. Sorry your not doing well, Tropical S...I've pretty much living on chicken soup, some fruit, oatmeal, fish, and baby food veggies, for the last 2 months. My triglicerides are way too high, and the good cholesterol is very low. When I asked how to lower these things, my Internist said to eat less carbs, and exercise. I was told I have prediabetes by the GI b/c my sugar was 108. Those tests were done over a month ago, but I don't know what my amylase was. How often should one be getting bloodwork done?
As for keeping a food journal, that's a good idea. I don't have a smart phone yet, asI'm not very technically inclined, but that sounds good to do, if you can.
Thanks again for the replies...it's so great to talk to others who can relate... although I'm sorry to have to meet this way. :)

Barbie, I too have very high triglycerides and my doctors always told me to lower my carb intake as well. I am also on Crestor, Trilipix and Lovaza, you hadnt mentioned what meds you are on for your high triglycerides. It wasnt until I went to the University of Penn to see a specialist and he told me that its the FATS as well that needs to be lowered. I am only allowed 15g of fat per 1000 calories. If you read your labels you will see how you have to juggle your fat intake. Low Carb intake is also for the triglycerides and also for the pre diabetes. But following this diet my triglycerides went from 4000 down to 600 in May, and my blood sugar went down from 120's to 90. I get my blood work done every 3 months as long as I am ok and sooner when I am having issues. Finding a good dr that is well versed in our disease helps alot!!

Barbie,

It sounds like you are on the right track with your diet.

It sounds like you are not eating breads, and simple carbos which will raise your triglycerides) as well as alcohol and any form of sugar. Some peoples bodies just produce high cholesterol and triglycerides. The only thing that will help is losing weight and exercise, I believe I've read that statins used for high cholesterol have a possible link to potential causes of pancreatitis but I'm not sure.

Please discuss all of this with your new doctor.

I'm glad that you are researching your options beyond what your doctor told you.

Hi Diane, I haven't been given any meds to lower my triglicerides, so far. I'll be seeing another GI soon, and hopefully he'll have more advice, and as you mentioned, be well versed on pancreatitis. It sounds like you have things under control, and at least are on meds for it. Thanks for all the good info...I'll try my best to lose weight, and steer clear of foods with a high carb content. :)