I am 37 y/o female. I got Pancreatitis after a failed ERCP to correct bile duct blockage from a gall stone left over from having my gall bladder removed. I developed Pancreatitis immediately and it was pretty severe. Ever since, I feel like it has awakened the “sleeping dragon”. I have just had a horrible attack and oddly enough this time it did coincide with my cycle. I couldn’t eat or even keep water down, so I got so dehydrated I passed out, smacking my head on the floor getting a nasty concussion to go along with my attack. Spent 4 days in the hospital, NPO, IV fluids and Pain killers. My veins kept blowing, and they had trouble even finding a place to put in another IV. I’m out of the hospital, still not eating going on 2 wks now. This has been a real beast. I sometimes feel like I’m going to die, and that no doctor is really interested enough to help me or to even TRY to save me…does anyone else ever feel like this??? I have the attitude that God helps those who help themselves, so I have taken it upon myself to get help, sooo…going to Vanderbilt in about a week, if I can stay out of the hospital long enough to get there. I’ll keep you posted. I love this board. Makes me feel not so all alone in all of this 
Kelly in Winchester TN
Hi Kelly,
I too developed Acute pancreatitis after my first ERCP post lap chole back in 1997. I was 37 at that time. I now have Chronic Pancreatitis, and had my last ERCP in Oct (#12) and am dealing with a Pancreatic Psuedocyst, due to a perforated panc duct stent. So this on top of my usual CP is way over my head. It’s the most painful, frustrating, lonely thing I have gone through. My family and friends are great support, but, you can’t help wondering if “they are tired of hearing about it”. I know I am. All I can tell you is to stay positive, pray, eat low fat, and if you need pain meds take them. I was just scolded by my Internist for not using my pain meds as much as I should… I just get so tired of it and fed up.
email if you need to talk liznavarro@adelphia.net
take care,
Liz
Hi Chris -
I was diagnosed with Chronic Pancreatitis in 2004 but wasn’t told how serious this disease is. I’ve just recently started my own research since the doctors don’t seem too well informed. I was recommended to a dietician and all she did was tell me what not to eat, which I already knew. She was used to talking to people about how to lose weight which I don’t need to do. She wasn’t even prepared for my situation. Like you, I’m planning on doing a paper on the subject and will share with anyone that wants or “needs” to read it, such as doctors and dieticians. Maybe we could combine info and come up with something awsome. I’m new to all this and haven’t had time to do my story but will soon. I hope these answers help you.
- I am a post menopausal woman in my mid 40’s. Don’t know if the pancreatitis caused the menopause because I was still drinking at the time. 2. I’m still in the experimental stage with the food but definately eat low fat and look for high calories. The main thing that triggers my pain is overeating and stress. I’m trying to gain weight so I push further than I should. For my sweet tooth I have found that Haagen Dazs Lowfat Frozen Vanilla Yogurt is wonderful - the Lowfat Frozen Chocolate Sorbet is good for a chocolate fix. 3. I had been pain free for quite a time till Nov 2006 when I was awakened in pain at 4am. Got into the Dr that day. I take Lorazapam for anxiety so I take 10mg at bedtime. I still don’t sleep a normal 6-8 hrs like I need but don’t wake up in pain. I do pray. 4. I don’t exercise because I’m trying to gain weight. I have always been around 118 but am down to 93 as of April 8, 2007. Not good! I do plan on trying some light weight lifting to build more muscle. I look anorexic but am not - would love to eat anything like I used to. I miss going out to eat. 5. I wish I could gain some weight. I take enzymes also but haven’t noticed a bigger belly, just loose skin. 6. My Gastro gave me some samples of Aciphex (20mg) that I take before breakfast, Creon 10 before every meal, and Hydrocodone only when needed. 7. Mine is caused from alcohol which I will never touch again! My last drink was the first week of March 2007. The closest I’ve come is Haagen Dazs Bailey’s Irish Cream Ice Cream but won’t even eat that any more. Can you tell I love Haagen Dazs?
I’ll share more when I find time to write my story but I hope this helps. Keep on sharing, as will I. Between all of us we should be able to get through this much easier. Hope you have a wonderful pain-free day or 2 or 3…
Hi,
I have had chronic pancreatitis for over twenty years. Feel free to email me with questions. I would be happy to help you in anyway I can.
Karen
I have been put on 2 new med’s Tramadol 50mg. and Metoclopram 10mg. Any
input.
Also just want to thank everybody for this site… it is so amazing.
Lisa
I have been put on 2 new med’s Tramadol 50mg. and Metoclopram 10mg. Any
input.
Also just want to thank everybody for this site… it is so amazing.
Lisa
My daughter is sixteen and has had this disease for at least five years, though we didn’t know until this year. We were told her problem was psychiatric. She is on a continuous birth controlk patch, Ultrase MT20, prevacid, methadose, fentynl patch, and diladud. Every time she goes into the hospital, the opiate gorilla groes. She can’t go to school, as her pain has been constant, so she is home hospital-schooled, basically left out of regular teenage life. No food or diet seems to help, every time she eats she is naseaus and in more pain. There are many nights she doesn’t sleep, all those pills don’t ease her pain. I have a hard time just getting her out of bed, let alone excersize, she is underweight, has been for years, in fact, her growth has probably been stunted,as far as what caused it, I don’t know. The doctors tell me that she needs to be detoxed, but no one will take her due to her health and my lack of psych benifits (sincew the insurance was convinced this was "all in her head, not only were many claims unpaid, but her lifetimew psych benifits are used up). I can’t detox her on my own. The foctors also0 state that if we don’t know where the diesease came from, we can’t help it.
Dear Pippy440,
I am so sorry how can they say it is in her head pain is pain it isn’t in her psychy . It doctors that do that yes i get depressed because I have had this pain but they shouldn’t judge people and say it is in their heads that gets me really angry. I would try to find another doctor that has compassion and can help.
I hope things get better
Kathie
. How many of us are men/women? I am female
For the women, does chronic pain occur more frequently during a menstrual cycle or a peak in estrogen? No
2. Are there any foods that help? Other than lowfat items, I have found that potatoes help my digestion. Ditto on the potatoes
3. If you are sleeping, do you get attacks? YES I DO
4. Does exercise help anyone? Just keeps my mind off the pain
5. I too am on a low fat diet but have some belly fat which I did not have before my diagnosis. I believe it is the enzymes for digestion which have caused this. Anyone else? I have some belly fat since Creon but I figured it was because I was approaching 40
6. I am on Creon and Zantac. Creon-20, Aciphex, Famotidine, Darvocet for pain
7. I have chronic pancreatitis but it is not through heredity or through alcohol. Nothing in my past would have triggered this and we’re not sure how I got it. Is anyone else the rare, “idiopathetic” type of case? You betcha - my GI says about 10% of CP patients are “just because” but mine may have been due to high triglycerides as a teen
How many of us are men/women? I am female
For the women, does chronic pain occur more frequently during a
menstrual cycle or a peak in estrogen? No
2. Are there any foods that help? Other than lowfat items, I have
found that potatoes help my digestion. I like toast with tea.
3. If you are sleeping, do you get attacks? Yes, I have.
4. Does exercise help anyone? I can not exercise or walk much
anymore-bedridden.
5. I too am on a low fat diet but have some belly fat which I did not
have before my diagnosis. I believe it is the enzymes for digestion
which have caused this. Anyone else? No, based upon any weight loss
and no exercise to chew up the fat you had before your pancreatitis,
the skin just hangs down differently, looking like flabby fat.
6. I am on Creon and Zantac. Cymbalta, Fentenyl, Liquid Morphine,
Valium, Zofran, stool softener.
7. I have chronic pancreatitis but it is not through heredity or
through alcohol. Mine was declared ideopathic, meaning no idio could
find the reason LOL!
Ok. Here goes.
-
How many of us are men/women? For the women, does chronic pain occur more frequently during a menstrual cycle or a peak in estrogen?
**I am a 35 yr old woman diagnosed 3 yrs ago. no correlation I have found to menstrual cycle -
Are there any foods that help?
**I keep my diet ultra low fat (no more than about 5 grams in a meal or 12 in a day) Cream of wheat, soup, grapes are often what I do when sick -
If you are sleeping, do you get attacks?
** yes I will often suddenly wake up in raging pain and nausea. Many of our bodily functions don’t stop when we sleep including digestion. Plus I figure if I’m asleep I’m not taking my pain meds so then it’s been more hrs since last dose -
Does exercise help anyone?
**not particularly. I sometimes like to ride my bike. I keep saying i’m gonna do my yoga again and my qigong -
I am very thin. I hover around 100 lbs.
-
enzymes with food. Tramadol. colace, dilaudid, phenergan -prn
-
Is anyone else the rare, “idiopathetic” type of case?
**I suspect that idiopathic is not as rare as they would like to claim. They always assume alcohol is the cause. I like how they ask "do you drink?"
Well, if you have ever had as much as a sip you would qualify, but this does not an alcoholic make.
I suspect mine is due to the valproic acid I was on for some time.
Hey Chris,
Just replying to your discussion-- I pray every day for a cure
I am a 21 year old female, I have chronic hereditary pancreatitis.
Yes my pain seems to be the worst a few days before my period.
I am overweight so my doctors say that my pancreas must be doing well do be able to allow me to maintain an overweight. I am having an ercp on monday oct 15th, he thinks there must be some sort of blockage that is causing the constant pain. I had never had a problem with acid reflux untill about a month before my worst pancreas attack ever, I am wondering if there is any relationship between bicarbonate production from the pancreas and pancreatitis. Possibly something to look into for research.
Foods that help me are pasta, potatoes, rice and breads, any carbs really can help me go with minimal pain… however the problem is- my blood sugars are high i have been told to start sticking to veggies and fruits to try to loose some weight and get my blood sugar down, however green leafy vegetables cause me to have a higher level of constant pain-- i am dealing with it somehow and eating what the doctors said but I just had a weekend without many fruits and veggies and it was the best i have felt in months.
I dont find that i get attacks while i am sleeping, however there are times when i have to take pain killers before i can fall asleep at night b/c the pain is so bad.
The doctors gave me cotazyme for a pancreatic enzyme to try to help with the pain but i do not need help digesting because i am overweight and havent been loosing weight… but i do have loose oily stools no matter what i eat so it is strange that i have never lost weight due to my CP
Steph
Hello Steph,
I don’t mean to interject into your conversation, but I felt the need to share. I too am overweight but the doctors are okay with that because it means that I am stable. I keep loosing and gaining the same 10 to 15 lbs. I have constant diarrhea and nausea or vomiting and still do not loose weight. My doctors tell me that my body thinks
that it is starving so it hangs onto anything it is able to process. As far as they are concerned my weight right now is a safety net. Mainly what I eat are fruits and veggies. I just wanted to let you know that you are not alone in your symptoms. Take care of yourself.
Leanne
The oily stools have never stopped with me, either. My doc thinks I have Crohn’s on top of the pancreatitis, which may be causing the oily stools. I am having a boatload of tests and will keep you posted. High carbs are the way to go with pancreatitis according to the nutritionist I saw, low protein as well.
Pain free prayers to you
I am 57 years old and female (post menop.). I have ideopathic acute panc. I used to have approx. 1 drink/week - now I never drink. Gallstones appeared to cause my first bouts but my gall bladder was removed in the first year. I have had panc. for approx. 7 years. I recently had a Whipple resection and it has been 6 months since I was hospitalized. I do get attacks at night. I read somewhere that there is some biological cycle that peaks at around 2am. Wish I could remember the details. When I am having an attack I lie in a fetal position, or bent over from the waist …when I am in the e.r. I cannot lie flat because of the pain. If I am in pain I will try ginger esp. if there is nausea. Crackers and tea otherwise. Or nothing. Good luck with your research. Betsy
I am so sorry for all you are going through. I have just recently been “introduced” to my C.P.- I, too, have problems with foods… trying to find what will work. Cooked veggies even give me hard time. My body seems to enjoy “garbage” foods…like Cheetos. I know that sounds bizarre but true. I have only been a wine drinker and do not have an alcohol problem either.
What concerns me is it sounds to me as if you have the WTONG doctors. The right doctor would not be accusing you of alcoholism, would listen, understand,be able to give you some answers! I guess I have been lucky, my doctors have been helpful (as much as they can be) and sympathetic…and up on all the research. Hook in to the U of Cincinnati and Johns Hopkins. The U of Cinn has a support group complete with RNs that can help. OR if you can-go to Johns Hopkins. They have an entire center dedicated to our illnesses.
Don’t sit and stew- It will make you feel 10 times worse. Don’t misunderstand. When the doctor first told me everything, I was taken aback, cried, etc… Then, I got on the internet and read…read whatever I could,
found this terrific website and others like I mentioned. The best part-if there is one- is the support out there for you. This website has helped me so much and everyone has been so supportive. It made me know that I was not alone. You aren’t alone either. Please don’t feel that you are. I so understand your anger…but that can work in your favor. If you’re angry, you don’t feel helpless and it will give you the strength to fight back.
I had to do this from another illness many years ago so I know about fighting back. I sure hope I helped you today. My prayers are with you and just know so many of us are praying for you!
Hoping for a pain free day for you,
Jackie
- How many of us are men/women? I AM A WOMAN For the women, does chronic pain occur more frequently during a menstrual cycle or a peak in estrogen? I AM PAST MENOPAUSE 2. Are there any foods that help? Other than lowfat items, I have found that potatoes help my digestion. Does anyone else have any food triggers or foods that help? LIQUIDS, CHICKEN SOUPS AND ICE POPS HELPS. VEGETABLES KILL ME …EVEN COOKED. CHEESE IS ANOTHER TOUGH ONE FOR ME. 3. If you are sleeping, do you get attacks? YES I do, and I’m wondering why since my pancreas should be “asleep”. Odd. I DOUBT OUR ORGANS ARE EVER ASLEEP SO TO SPEAK. I AM AWAKEN BY PAIN AT TIMES. 4. Does exercise help anyone? Yoga, pilates, etc.5. I too am on a low fat diet but have some belly fat which I did not have before my diagnosis. I believe it is the enzymes for digestion which have caused this. Anyone else? I’VE ALWAYS HAD BELLY FAT. WHEN I’M IN PAIN, MY STOMACH GETS MUCH LARGER… HARD TO PUT CLOTHES ON . 6. I am on Creon and Zantac. What is everyone else on?7. I have chronic pancreatitis but it is not through heredity or through alcohol. Nothing in my past would have triggered this and we’re not sure how I got it. Is anyone else the rare, “idiopathetic” type of case? YES…THOUGH RECENTLY THE DOCTORS TELL ME MY PANCREAS IS IRREGULAR AND I WAS BORN WITH IT. THE SPECIALIST THINKS IT’S STRANGE THAT IS SHOULD “COME AT ME” NOW. SO I GUESS I FIT IN TO THIS RARE CATEGORY.
These are some of the questions I can think of, if anyone has others, please share. I love this support group but I want to find a way to stop our suffering and this only occurs through research and knowledge.
DOES ANYONE FIND THAT MORNINGS ARE THE MOST PAINFUL? I DO. MORNINGS SEEM DIFFICULT FOR ME.
KEEP THE QUESTIONS AND ANSWERS COMING… IT HELPS TO KEEP US OUT OF THE DARK AND TO FEEL THE MUTUAL SUPPORT!
WISHNG EVERYONE A PAIN FREE NIGHT AND A HAPPY 4TH
JACKIE (CAPTIALIZED TO SHOW I WAS ANSWERING -NOT YELLING)
Has anyone experienced any problems with Splenda (sugar substitute)?
hello chris
i hope there is a correlation , i am female post menapause. i aquired mine by blockage from stones in my bile ducts. i do get pain at nite also that wakes me from a sound sleep. we all find what works best for us only to find it makes no sense next week or next month. its a crazy unpredictable ride to say the least. i also have extreme swelling causing 10lbs in weight gain in 3 days looking pregnant which i kno and thank god i am not . my pain is mostly in my back as chronic when the belly starts to hurt i kno i am on the verge of a flare and thats my clue to start liguid only diet allowing the pancreas to recover. my biggest problem which seems the worst thing i can do is drink any form of alcolhol. i never drank only at gatherings (a drink or two) but ,now if i dare to drink 2 drinks i am done for the pain comes on strong and nausea is unbareable. hope this helps you . thank you again for asking have a painfree day.
nancy
It seems that we CP patients have alot in common… I once had a doctor who thought “idiopatic” was rediculous and questioned my disease and the pain I am in on a daily basis… I am tired of being called a drunk, loon, and “pain all in my head”. I have become quite cynical of all of the medical profession, seems like"if it isn’t in the book" it doesn’t exist. Don’t even go to doctor anymore, not worth it, just take my meds and pray it goes away.