I take Viokase 16 (the number is part of the name) 1 or 2 tablets with snacks, 3-4 with meals. They look like large vitamins…sometimes, I will split up the meal dose, and take some at the beginning, and two around the middle of the meal. LOL…when I am actually EATING, they are miracle workers!
To the jealous pizza person…sometimes, if it is not a greasy pan crust, try peeling off the cheese layer and just eat the crust and the sauce…it’s better than you might think!
EVERYONE with CP should ask their docs about Sandostatin…it has changed my life. It shuts your pancreas down, so to speak, so you must take enzymes, but it allows a break in that cycle of inflammation, scarring, blockage, etc. Flare ups still happen, but much less frequently, and weight stabilizes. The only downside is that it doesn’t work forever…but, if you take a break for a year or so, you can try again. I issue that disclaimer because I am on the downside of its effectiveness, but it has been a much better 2 years than I’ve had in a long time.
Sorry I haven’t been on, I had a bad flare up…was in hospital for 8 days. The good news, though, is that the plan I worked out with my PCP and my new specialist worked perfectly. Except for the triage nurse who told me…and I swear I am not making this up…“Your pain is the WRONG PLACE for pancreatitis!” (You all know, the spear on the right side of your spine, the punch under your left rib…Then this ahem…educated individual informed ME that my pancreas was on the RIGHT side of my abdomen…I just rolled my eyes, unfortunately used to such idiocy. My mother, however, called her out and put her right in her place by telling her “Really? The specialist at IU found her pancreas on the LEFT side…maybe you should give them a call and explain your diagnosis.” If I hadn’t been dying of pain, I would’ve died from laughter…GO MOM!
I also think finding the best way for you to deal with stress is very important, too…Pray, sing, watch a movie, call a friend, swear into a pillow, watch a sunset…take a walk. Take a day off from thinking about whatever is stressing you. Call an old friend or write a letter. Just do something sweet for someone else…even if it something small. Say thank you to the friends who have helped you, hug the spouse who has held you or cleaned up after you. But somehow, every day, take a few minutes to focus on something good and positive. This disease is a tough one, it really really is, and only a very few of us know the pain. It is so interesting to me that very little actual complaining goes on here; but so much love and encouragement and support. Frustration I hear sometimes, but very little whining. I think CP weeds out the whiners pretty quickly.
Anyse, was it you who said they don’t believe your description of pain levels because you are still cheerful and calm? I am the same way…my BP actually goes down…way down the more pain I am in, because I have learned to let go…anxiety, complaining, fear,rudeness…ALL amount to nothing. They don’t encourage people to help me…thrashing about, screaming or whatever…doesn’t decrease my pain at all…it increases it, and LESSENS my ability to inform my caregivers about the problem, and to focus my energy on getting better. Sure, sometimes a nurse or a doctor is stupid or unkind and needs a slap…but being calm, in the long run, serves me better…LOL I’ll get them later, when I’m stronger and more creative in my revenge. (just kidding)
Heh heh heh.
Susan in Indiana
