Well, got back from the EUS, and while they didn’t find anything seriously wrong (no cysts, pancreatic divisum, etc), they said that my entire pancreas has been damaged. I’m going to start looking for books on CP to try and manage this by myself. Anyone know any books or other literature where I can start?
Thanks,
Rob
Thanks Vonnie. I hear what you are saying! 
Jackie
Go to the National Pancreas Foundation website for information. There are good resources there. Please still keep in touch with your physician as they can monitor you . CP is an ugly disease. I went several years with moderate pain and malabsorption but then, about a year ago, things really went downhill and I thank God that Doc K was around to help out, from pain meds to antinausea meds to just a hug when I needed it. If you are going to manage things on your own, be sure you keep a diary of events, even if they seem minor. This way, when you do return to your doc, everything is documented.
Good luck and prayers for pain free days and nights.
Teresa
Hi Teresa,
Thanks for the info. I’m trying to do some research to find out what types of food I should be eating (and I guess, more importantly what types I should not be eating!). I already don’t drink (haven’t for a few years now), so that will not be an issue.
This is the first time in 20 years, since I had my first acute attack when I was 19, that a doctor has said without a doubt that I have chronic pancreatitis. At least I now know what I’m dealing with.
Thanks again,
Rob
Teresa,
You seem so knowledgeable. This may like a silly question but I am asking as I am relatively new to CP- Do you find that stress makes the symptoms/pain much worse? I seem to be experiencing this. I am wondering
about this. I love the idea of a diary. I will definitely use this. I am very grateful for all the support.
Thanks so much,
Jackie
Rob,
I had a similar situation. I had an acute attack out of the blue several years ago. Then I had an attack in April and I went from acute to chronic in short order. I am in the trial and error stage myself. What works for most people doesn’t seem to work for me. Vegetables-even cooked- kill me. I am not dropping weight but seem to stay swollen all on the time. I will tell you that this support group is the best and so helpful! I am sorry you are experiencing Pancreatitis. It’s not easy.
Wishing you and everyone a pain free day!
Jackie
Jackie
Stress can do a lot of very bad things. In my case, stress does not seem to make things any worse than they already are but, once again, stress releases a ton of hormones that can exacerbate any situation. Once again, a diary is always a good idea.
Rob
WRT foods, remember what the pancreas does. If foods require it to work real hard, such as proteins, you may be more uncomfortable. Fats are a danger as are fruits and veges that are difficult to digest. Stick to foods that are easy to digest. What does that leave, you ask? Carbs. Most dieticians will recommend low fat, lower protein (you need some protein), and high carbs for pancreatic patients. Don’t forget to stay hydrated, 45cc/kg/day. Hydration is very key in my situation. Often times, I have to go into the hospital or doc’s office for hydration because I just can’t seem to keep up. After a litre or two of fluids, I feel like a million dollars.
Good luck to you and prayers for pain free days and nights.
Teresa
Hi everyone,
I know that stress is a big factor in my cp. My worst attacks, which required hospitalization for 3 weeks in 2001 and a solid year of stents in the duct in 2007, were a result of some very stressful times in my life.
I too find that eating high carbs, low fat, very little protein is the best diet.
If you are swelling up, you may need more digestive enzymes. When I get bloated I know I haven’t been taking my enzymes properly. I find it is really important to take them EVERY time I eat. Snacks and meals. And I agree with lots of water. I spent 5 days in the hospital a few months ago because I was dehydrated and needed another stent.
At best it is a fine line we walk. But with proper attention (which at times feels like a 24/7 thing) you can lead a reasonable life.
God Bless you all,
Vonnie
Teresa,
Thanks so very much for your reply. Thanks also for reminding us to stay hydrated. I am not a water drinker by nature but will make much more of an effort to drink fluids.
What carbs seem to sit well with your system? Any in particular?
I guess you’re correct about the release of hormones during stressful times-it seems to knuckle me under. I will have to find better releases during my stressful times as I hate taking pain meds…don’t like the feeling (but I do resort to them when I have to).
Thanks again. I appreciate your input and info.
Hoping for pain free days for all of us!
Jackie
Vonnie,
Thanks so much for your response. As I told Teresa, stress seems to really “knuckle me under”. I am going to start hydrating more. What 'high carbs" do you especially do well with?
Thanks so much,
Jackie
Pasta, especially angel hair pasta, seems to work best for me. I also have esophageal dysmotility and gastroparesis so bread is a bit difficult but prior to this, bread was great. Rice is also good (being Japanese, I guess it is a no-brainer for me:)), and I also make rice pudding, once again, because of the esophageal dysmotility. It’s a trial and error thing. WRT pain meds, please do not feel they are a crutch. They are there to give you a quality of life that nothing else can. I have done acupuncture, reiki, and meditation, all of which helped a bit but nothing beats a celiac plexus block, fentanyl patch, and a bit of Vicodin ES every now and again.
Good luck. I am off to Cub Scout Camp for a week so I will try to check in from there (we have one computer at our disposal) but if not, see you all next Saturday!
Prayers for pain free days and nights.
Teresa
Teresa,
You are such a blessing to me. Thank you so much for your input and advice. Have I told you that? I guess so but it is from the heart. I will try pasta. Saltine crackers and bread seem to be okay for me. Yes, Vicodin does
help but “coming down” from it makes me so nauseous…and gives me a headache sometimes. I like acupuncture and am thinking of trying it again. I used it for my back years ago and it was fantastic! I am familiar with Reiki but have not tried that yet. I am not the best at meditation. I know it takes practice. I need to learn to quiet my mind more often!
I LOVE rice pudding and rice so I will try that.
Have a great time at camp. Have lots of laughs and enjoy yourself. Praying for you to have a wonderful time and a pain free trip!
Hugs to you,
Jackie
I would agree with the carbs mentioned. Rice, bread, pasta, I also love soy sausage or any soy product basically. Eggs are pretty easy for me to digest and I do pretty well with apples, pears, bananas, blueberries, strawberries, peaches. I can’t do raspberries and blackberries. The seeds are too much. Potatoes are alway tasty. But mostly it is trial and error. Some days I can eat one thing and the next day I can’t. I can eat fish if it is white and not greasy. Tilapia, orange roughy come to mind. I love salmon, but it has a lot of oil and that can be a problem sometimes. So I don’t eat that very often.
Keep the faith and God Bless!!!
Vonnie
Vonnie,
I am thinking of going to the Mayo Clinic. I believe that where you go? Who is the doctor you use? I know our group has mentioned a doctor there. I really want to go to the best and a flight from Fort Lauderdale isn’t too
expensive. Thank you so much for all your input. I have had a pretty weekend- pain and digestive wise (who hasn’t,right?) and would just like to be in the best hands possible.
I am finding tea and crackers pretty good, low fat chicken soup, rice and Edy’s sugar free ice pops sit well with me. Potatoes are always good…even mashed. Trying to keep hydrated as well.
Thank you so much again!
I am keeping the faith 'cause I have a wonderful support system in all of you!
My prayers are with you and many blessings to you
Jackie
Thank you to everyone who has written responses. I always mean to write more, but I usually feel like I’m asking more questions instead of helping others. Perhaps because I’m so early into this situation (and the pain is not that bad usually)…I guess I need to open up more.
Maybe over the next few days I’ll write my story, that will help to keep me connected!
Thanks again,
Rob
Rob,
Take each day as it comes. Your comments and questions keep you connected. This is what I have found. What a blessing everyone is! Had a painful weekend…Hoping for a pain free tomorrow.
Hoping you are pain free!
Jackie
Jackie,
I don’t go the Mayo. I live in Colorado and have a doctor in Colorado Springs and have been to University hospital in Denver. I am confident in my doctor’s and don’t feel I need to go anywhere else at this time.
I wish you the best however in getting into Mayo.
Also I know tea can be a tummy soother, but I was cautioned to not do caffeine. I do caffeine free teas. I assume you already know that, but you never know.
God Bless,
Vonnie
Thanks so much! I will try ginger.
Jackie
The only information I have been able to find is either online or through my doctors. I laways check the health section of Barnes & Nobles, but… lol
As for the pastas and rice- definitely work well- potatoes as well. For a couple of months I would almost always vomit after eating. My gi put me on metoclopramide which is for gastroparesis. That has kept me from getting sick too often, but I still have to deal with steatorrhea fairly often. I take 20 mgs of metoclopramide and 5 pills of pangestyme before each “meal”.
Hi teresa,
I am way behind on emails and keeping up, cp keeps getting me down, I read your reply and want to commend you on a week at scout camp! But girl, how in the world do you survive it, I cannot take heat and
lots of activity just kills my stomach, I had half of my pancreas removed so along with a bad surgery and cp all the time I just admire people like you, it seems to me the longer one has this the harder it is on a person, I am coming up on 10 years, I know I was much more active in the beginning, the pain and nausea just do me in and I am swollen in my tummy day after day,just wondering how you are doing !
julie