Chronic Pancreatitis-Statistical Information

Pancreatitis
#1

Hello all,

I have already introduced myself as a chronic pancreatitis patient. I live in an area which does some research on pancreatic diseases and I would love to share some statistical information. I would love to find out the answers to some of these questions. If you all could let me know, I would love to compile it and send it back. There may be no correlations with our illness, but you never know.

1. 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? 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?3. If you are sleeping, do you get attacks? I do, and I'm wondering why since my pancreas should be "asleep". Odd.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? 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?

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.

Chris

#2

I also have ideopathic pancreatitis and have found that I get more attacks around my period.  I am not sure if there is any reason for this though.

#3

  Hi, Chris, I am a 40 year old male.  My gi believes that mine is due to alcohol although he also seems to think that I still drink regularly.  I have had some attacks while sleeping.  I find that starches seem to work best- breads, rice, pasta, etc... as well as some salty stuff- chips and olives mainly.  I haven't had the energy lately to exercise like I should.  I have noticed that during an attack doing anything involving my stomach muscles seems to make the pain worse.  I lost weight at first, but have gained some back.  I currently weigh 174#.

   Warren 

#4

Hello Chris... quick answers to your questions... :-)

1. I am male

2. 40 years old

3.  Pineapple helps

4. I exercise a bit ( a stationary bike) (to tired now.. but much more before the CP)

5.  Have gained much weight since my CP started

6. They can’t find the reason for my CP… the first thing they said was alcohol, but I was a light drinker.. i think that was the only thing they can point to! Don’t know my family history very well.

7. Other things would be, what foods set it off.. are their constants between all of us???

8. Depression is a biggy

9. Stress.. ( I own my own company and have much of it! trying to learn how to manage it better. It seems to be a major factor in my flare-ups...)

I think that’s it for me, Thanks Chris
#5

Hello Chris,
In answer to your questions.

  1. I am a 49 year old woman, post mp(surgical at 32)
  2. I crave fresh fruit and tomatoes and sweets ( I am talking really craving the sweets!) Anything fried or fatty makes me vomit and gives me severe pain and diarrhea.
  3. I often wake up in the middle of the night with pain and diarrhea.
  4. I am so tired right now from battling the pain that just doing a short walk or general housekeeping leaves me spent. I am going to try to walk everyday.
  5. I take Panokase ( pancreatic enzymes up to 16 tablets a day), prevasaid and zofran. I also have vicodine for the pain.
  6. I have chronic pancreatitis, not from alcohol or drugs, the doctors can not explain the cause. I was diagnosed 2years ago and have been in and out of the hospital ever since. ( including this weekend)
    I think that stress plays a large part in attacks, today I am quitting my job which is very hard to do as I have been working since I was
  1. This cp really sucks, but life goes on. Here’s to a day free from pain!

Leanne

#6

Hi,Chris,

To answer a few of your questions: I am a 38 yr old woman and YES, flare ups are worse right before/during my cycle.Dr. says "That doesn't make sense", but what does he know he is a man.LOL

This is weird, but Tomato juice always helps settle my stomach.And when slowly starting to eat again after an attack, I crave salt. Anyone else do this?

Yes, I have pain at night. It wakes me 2-3 times a week.

Exercise: I went outside today to do some yard work, weed pulling, planting bulbs,etc and had to quit before I was done.To much bendind over,lifting,twisting will cause my belly to hurt.

Yes on the belly fat,also. My weight has been up and down since dx with CP.I take Creon-20, along with,Neurontin,Reglan,Phenegran,Hydrocodone,Zoloft,Klonipin and Nexium. I think the Neurontin is making me gain weight:(

 I myself was wondering something.. I have noticed pain is worse when I lay on my back, but better when I lay on my stomach. This doesn't make sense to me, considering your pancreas is in your stomach, it seems like it would hurt worse. Any thoughts?

Hope everyone has a pain free day

Cindy in Ky

 

#7

hello cindy,

       just wanted to let you know ur not alone i too crave salt alot esp during a flare . and the back pain is par for the course i also can not lay on my back the reason is that the pancreas lies deep in the stomach which is closer to the back this is why you are feeling pain when u lay on ur back. i ask any1 that will do it to give me a bear hug pushing on my back eases my pain as if its pushing it off my nerves in my back another crazy detail.alot of ppl including myself during flares are unable to lay on their side. during those times i sleep in my recliner basicly sitting up. hope this helps u have a pain free day. nancy

#8

HI To Everyone! 

Chris, In response to your quesions, I would like to relate the answers as they apply to me:  1.  I am a woman.  The pain I suffer with daily does NOT occur more frequently or peak related to estrogen.  2.  Other than low fat foods or no fat foods; I have found nothing except being NPO that helps.  Conversely, foods that are high in fat - which I do not eat - dairy products and foods that I have specifically avoided through the years, prior to being properly diagnosed, can and do cause severe pain and nausea.  And, yes - I do have attacks when I am sleeping - I do not know about anyone else, but sleep is a problem and I rarely sleep more than a couple of hours at a time.  I agree that it may seem odd,but if the nerves are damaged because of the pancreatitis, they could be inflamed even if the pancreas is supposedly "asleep"/I have wondered about this also since my physician has told me there is nothing ese that can be done to help me except pancreatic surgery or a feeding tube in the jejunum - nothing to eat or drink for  year at least....  4.  Excercise does seem to help me if I am having a fairly good day.  Since diagnosis and insulin-dependent diabetes because of the damage; I have the same problem. 6.  I am on a lot of medications, but Prilosec, Anzemet specifically related to the GI problems.  7.  I have Pancreas Divisum and it took over 12 years for me to be correctly diagnsed - even after 5 ERCPs in one year.  Is a delayed diagnosis common??  By the time I was treated, so much damage had been done to the ducts, the pancreas, liver, spleen and any other physically close body organs, that stenting and various surgeries did not help. But,  have learned to live each day and still have hope that maybe I can help someone else or new medications pehaps shall be developed that can help all of us.

Hope this helps - Please anyone - feel free to contact me for any questions, by sharing and learning, we can only grow stronger.  ;-)

Jamie 

 

 

 

#9

Hi Again,

In reading through some of the messges - I have a sugggestion to help with pain as it relates to lying flat.  If you can lie on your side and pull your knees up close, sometimes that helps - if not, try sitting up and lean the main part of your abdomen over a large pillow or over bed table.  Hope this helps,

Jamie

 

#10

1.  I am a 27 yr old female.  I'm still trying to figure out if there is a correlation to my cycle.  My dr's don't believe that there is a correlation, but most of my hospitalizations have been 1-2 days before my period starts.  My cycle has goten much worse and more painful since the onset of the pancreatitis. 

2.  A major find for me was Accelorade (a sports drink that I used when I did triathalons) It has electrolites and some protein It is one of the first thing that I can tollerate after NPO (even better than water for me).  Other recommendations are V8, and slimfast (the original low fat kind).  Ther worst thing I tried was Ensure (a nutritionist's recommendation) it has a high fat content and had me doubled over so fast.   

3.  I can sleap when I don't have a flare up, when I do I have pain and wet sweats all night.

4.  Yoga made it worse and trigered terrable diarreah, I try to stay active but it's hard.

5. I am on a low fat diet, I do have some belly fat, but I have very little abdominal strength from huge surgical incision (42 staples and all major abdominal muscles)

6.  I am on Creon, Protonix, Questran (for the diarrhea), and Lexapro. 

7. My diagnosis is "idiopathetic" (but I did have a whipple for pancreatic cancer) I never drank much alcohol and don't drink at all now.  No family history.

8. I do suffer from major depression that seems to fluctuate with correlation to pancreatitis and enzyme levels.  Could just be feeling crappy increases my depression.

 

#11

I to believe my cycle is totally related to my cycle… yesterday i spent 6
hrs. in emer. and they determined that it was an ovarian cyst ruppered. I
experienced all the same symptons of the pancreatitis (blood levels were
normal) Most of the time i think i am going crazy. I am also on Lexapro
protonix and the nause med’s. I am 37yrs old & had a tough year. No
energy!!!

#12

Hi all

1. 54 year old woman. hormones not a known factor for me

2.  carbs are less painful or troublesome and have had less pain since I have been taking the pancrease and dicyclomine.  I had attacks from restraurant food within moments of eating (fast food or truck stop) always thought it was food poisoning until my diagnostic test  this year.

3. my worst attacks happen when I try to sleep....pain with vomiting and feverish chills, always tired feel almost worn out from the constant ache in my gut. always have the ache increases with the other attack crud

4. I have a BIG dog that gets me walking several times a day.  this may help & gets me out of myself for sure.  my gut gets in the way of yoga, I do weights, walking & resistance band, just not regularly. 

5. I had been on Atkins diet losing pretty good but in much pain before the diagnosis.  I have gained since the enzymes what a trade off. 

6.  Chronic pancreatitis...did a lot of drinking in my twenties none at all in the last 20+ years.. I don't think it was caused by alchol but drs do..... I laugh when they do the stern warning not to drink, I miss real ice cream more... 

I think we can learn more from each other than doctors are offering us

Suz 

#13

Hello I am sorry to hear about your bad fortune, I to went through the who overian cyst thing, I then found out that i was going through the change at 28! and that was very hard I had just remarried and wanted another child with my new husband but that was out of the ?, I then went through my historectomy and knew it was all over, I then had my gallblader taken and that was a bad deal ended up having a complete blood transfusin, and all and all, I think it was the pancreas the whole time, i have quit arugeing with doctors, and just take my pain meds and stay down, life is so hard but with people like you it seems to ease the depression. Thank You so much and i look forward to hearing from you soon…

Barb

#14

I understand what you mean…giving up on doctors…

#15

Hi again,

In reference to the physicians, is it better to have a doctor that does not meet our needs - - - -  better than no doctor at all?  I live in a rural communiy and it is very political.  There was a time that if a doctor told a patient to stand on their head for 6 hours, take 3 cleansing enemas, pull their toenails out and other ridiculous things - people would do it...if they did not, they were without a physician.  Interesting???  And, does anyone else have the problem of having to travel over 100 miles to obtain the proper care and if so, how do you deal with emergency situations?

Thanks to everyone for giving me hope and making me stronger!! ;-)

Jamie

#16

hi drmkachr

      I get frustrated I have a doctor that wasn't honest when I was in the hospital to say he didn't know what was wrong . Now he gives mixed messeges saying that he was to a conference on chronic pancreatis and that i fit into that but in the next breathre that i could have nerve ending pain which isn't the case the neurologist I saw even said that this sounded like pancreatis. We tried wearing a TENS Unit but it didn't help . I get attacks when I have had to much fat in my diet or even ate , drank water.  THe other doctor he does want to do anything unless his back is against a wall . He did my first ercp and i had the blockage of the bile duct , plus pancreatic divizum. Then went into pancreatis , so I get frustrated and depressed which doesn't help.

                                                          hugs   Kathie

#17

Chris,  Thanks for doing this survey.  It's been interesting to read all the replies.  Mine follows:

1.  57 yr. old female.  Partial Hyster. @ 30, post meno

2.  One day I can eat one thing the next day it makes me sick

3.  I get attacks when I sleep on my right side or stomach and sometimes on my left side.  Back sleeping works best for me.  Night sweats also.

4.  I can't twist, bend or bounce.  Walking seems to be the best for me.

5.  No.

6.  Creon daily, Darvoset when needed.

7.  We are still tying to figure this one out.  Not a big drinker - no heredity.  Doc thinks I might have IPMN which is a disease of the panc. duct.  Right now I have a stent in the head of the panc.  Until I get opened up they will not be able to do the tests required to see if I have IPMN. 

I have had pain in my side since I was a teenager.  At that time the doctor told me it was gas.  Then I was told that I had stress.  Then I had my gall bladder taken out.  I've often wondered if all of that is related. 

#18

I definitely relate to this

#19
Here are the answers to the questions you have ask.\
1.  Female/yes many times I am in the hospital i am on my period. 
2.  Have not noticed
3.  I wake up a lot with an attack
4.  no
5.  I do notice that my stomach seems fuller sometimes more than others
6.  Creon
7.  Idopatheitic pancreatis, but I did have a mass 12 years ago.
 
Thanks,
RB
#20

Hey there!

I am a 56 yr. old woman, had a hysterectomy several years before my first pancreatitis attack 3 yrs. ago–was on estrogen; asacol for my chron’s disease; mestanon for my myasthenia gravis; effexor for the major stress in my life; exercising to keep the fibromyalgia at bay; and was on the Atkin’s diet. They stopped all the meds when I was in Neuro ICU. Have never been much of a drinker–glass of wine now and then and had had my gall bladder out years ago. The doctors could not decide what caused the attack–truly almost died–so lucky to be alive. A surgeon at Shand’s Hospital at the University of Florida said he thought it was the Atkin’s diet because of the high fat, high lipids, high triglycerides I had been eating–along with major stress. Since having a endoscopic untrasound, they think my stomach stops working also which may inflame the pancreas–didn’t know if this might be of help to anyone–I’m on azithromycin (Z pack antibiotic) to keep my stomach digesting food–apparently this is neurological as is the myasthenia. In addition to the antibiotic, I am taking Viokase–has really stopped the pain thru my back and stomach–take 4-6 each time I eat a major meal (low fat of course); a couple when having a snack or start to feel discomfort thru my back. One of the drs. at Shand’s told me if I feel an attack coming on to start taking additional Viokase, and it will help stop the attack.

Hope this info is of help to someone–I was actually told with my last checkup at Shand’s that I should just keep doing what I was doing and call them if I needed help–otherwise, no more appointments.

Take care,
Sue