1. Community
  2. Gut, bowel and stomach
  3. Pancreatitis and Pancreatic Disorders

Managing Chronic Pancreatitis

Posted , 10 users are following.

Poptop
Poptop

I have rarely posted here because I feel guilty. The reason, I am not having the extreme problems and pain you all are experiencing and feel my health issues are so minor compared to most here.

I was diagnosed with idiopathic chronic pancreatitis 4 months or so ago after a trip to the ER in extreme pain. It took just over 24 hours to get things back to "normal" and could go home. My GP said "It's gone, go ahead and eat whatever you want". Thank goodness for a great GI doc. I'm now on Creon and an extremely low fat diet. Still struggling with meal planning. I have lots of questions and am finding little information to help. Please excuse the long post but I need help.

1. Are there any cookbooks or info books on how to eat properly with pancreatitis? (I'm currently buying only foods less than 5% fat.) Are there any books that "name names", i.e. brands with low fat?

2. Do you occasionally get a feeling of fullness under the left rib cage only to have it go away within hours?

3. Do any of you keep logs of what you eat and how you're feeling? Does it help your GI understand what you're going through?

4. Have had 3 episodes of pain but much less than the original attack. It still hurts like, well you know what, but then suddenly stops. I mean one second pain, next none. It makes me think maybe a gallstone passing. Could that be it?

5. Took a while to get my bowel movements somewhat regular but they are still not back to what they were. Has this occurred to you and does it improve?

6. Do you get sweats about a half hour after eating?

7. Do you have uncontrollable gas that smells horrible?

There are more questions but this has gotten long enough already. Thank you for any hints and help.

 

0 likes, 14 replies

14 Replies

  • victoria68137
    victoria68137 Poptop

    Posted

    Hi how were you diagnosed with cp can't believe they let you out after only 24 hours...disgraceful. I think you should really be referred to a specialist dietician really for support...sounds more gall bladder than cp
    • Poptop
      Poptop victoria68137

      Posted

      Thank you so much for replying.  After having had hip replacement surgery in October and all it's limitations I was so ready to get out of the hospital.  Even at my age, 70, I'm very active and recovery from that went smoothly and I'm now allowed to live a normal life, as well as I can with the CP.  Maybe I pushed too hard to get released.  I only needed the initial two doses of IV pain med with no more abdominal pain at all.  CP was diagnosed with abnormal lipase and amalyse levels which returned to normal in less than 24 hours.  I do have a prescription to see a dietician; need to followup on that.  Was wondering if it was more gallbladder but CT and MRI did show a scar on the pancreas and a few calcifications and no gallbladder abnormalities.  Guess diagnosis was based on that. 
    • anne92759
      anne92759 Poptop

      Posted

      Hi popoptop,I have read your posts and it looks like you are having a pancreatic attack,mine has lasted 6 weeks this time!

      Sometimes you do get the feeling you are that full you could burst,very severe pain after eating,and red hot sweats too,although you can have cold shivers to!

      There is lots of gas and belching because it can change the emzines in you stomach and have gastritis too!!.

      I have no galbadder as I have it removed in 2006,but it feels like I have a boulder there ,most of the time,IV recently had an ultrasound,with no clear results of anything to cause the pain!!.I have spent 5 weeks on soft food sometimes complan drinks.

      I am now gradually adding ready break,and eating gluten free products!.

      Rosemary

      Conley cook books are good as the have lower than 4.%,fat in everything!

      If you still can get them!!

      Hope this helps you out,and you start to improve.ANNE.XXX

  • Reefsider
    Reefsider Poptop

    Posted

    Hi Poptop, I assume, since you now see a gastro guy, that he/she concurs with the diagnosis made in hospital and did some tests of his own to confirm?  I agree being turfed out of hospital after 24 hours is shocking same goes for what your GP said.

    Re the guilt trip,,totally unnecessary, 'they' say (pretty bright mob 'they') that pain can be almost non existant for some with chronic pancreatitis.  I don't get it that bad either although I feel pretty rotten most of the time. 

    My CP is deemed auto-immune but it can be a rare complication of another (weird/rare/hurts a lot) disease I have, that one's a genetic screw-up.

    I was diagnosed 6 months ago, came out of the blue, I thought the gastro guy was joking when he said I have pancreatic calcifications.  I was in hospital but everyone thought it was my other disease at the time, I didn't however, I knew it was something new but what a shock!  Creon is the miracle I never knew I needed.  I had/have severe malabsorption issues, had malnutrition, foul stools and yes the gas could be a deadly weapon of war, and I still get it sometimes yuk! My pain was/is still at times, more an ache, sharp twinge like pain through the back and nausea mainly.

    I have Chronic Pancreatitis, fatty liver, fatty pancreas and inflammed stomach.

    1. Low fat diet, google you'll find plenty of recipes.  Cut out fast foods, butter/cheeses etc (no more pizza!) prepare food at home from scratch. It's not so bad.  We still need fat so eat salmon or other oily fish once or twice a week.  I use a good olive oil when cooking just about everything including my bread and my gastro guy said he likes the look of my diet which is mostly Mediterranean.

    2.  I feel full and bloat in centre after food

    3.  I don't, it's a good idea though.  My gastro guy is super and he approves of most things I do.

    4. Probably not

    5. Mine similar to you I think and doc and I are working on getting it better, not perfect just better.

    6.  No

    7.  See above re military weapon

    8.  Oh no 8 ok.  Hope that helps.  Keep your chin up, stress is not good for us, don't drink alcohol or smoke. 

    Hints or tips, hmmm, a sense of humour helps.

    Take care, come back again without the guilt, regards Reef

     

    • Poptop
      Poptop Reefsider

      Posted

      Thank you so much for your insight. 

      Endoscopy did show inflammed stomach so GI doc has me on Omprazole for 3 months.  I go back to him early next month for a followup.  I also have IBD so fast goods and fat saturated foods have been left behind long ago.  The only "butter" used is Country Crock which is 9% fat, the lowest I could find, and I use extremely little of that.  Baked chicken, canned tuna in water and pan fried fish using only Pam have been my source of protein.  I've cut out everything else over 5% fat.  Surprisingly, pork tenderloin is only 8% so I can eat small portions. 

      I do smoke and working on quitting.  It's hard to do. 

      A sense of humor, thank goodness my husband has one.  He'll yell "incoming gas bomb".  Thankfully, he is extremely supportive. 

      Stress, yes there's a lot.  About a year and a half my daughter went through a nasty divorce, trying to raise 4 kids, and then her ex died of his own health issues he did not take care of.  Now trying to help manage the grief the kids are experiencing.  Life can sure throw some curve balls. 

  • nataliefranc
    nataliefranc Poptop

    Posted

    I have 2,4,6 and not been diagnosed with cp. all tests clear and told ibs. Also very constipated most of the time. I get horrific smelling gas if I eat healthy! But not usually. I think I have gastritis and am waiting on another endoscopy. I've had these symptoms 7 years now. Had endo when it all began, more recently had ultrasounds, ct, stool samples, loads blood tests, detailed MRI of pancreas, colonoscopy. All clear. I get that feeling of fullness under left rib. Almost have to massage it and wind myself. Also get short sharp stabs all upper left abdo, side and back, also feel burning mid/upper left back sometimes. Symptoms much worse after alcohol (which I have recently cut out altogether) but there mildly most of the time. Never had acute attack and never been so bad I've had to go to hospital. Seen so many GP's and specialists over the years and they all tell me it's not my pancreas! I just still struggle to believe them!
    • Poptop
      Poptop nataliefranc

      Posted

      Thank you for your post.  The worse thing about IBD/IBS are the attacks of pain, diarrhea and then the constipation.  GI doctor, years ago, prescribed Levsin and I had amazing results.  It does not stop an attack but greatly lessens it.  You go and it's over.  Also, it completely eliminated constipation.  I took it every night before bed.  Now only take it when I have a problem. 

      So sorry you're having difficulty getting a firm diagnosis.  Unfortunately, IBS/IBD is diagnosed by symptoms only. 

  • tomjohn
    tomjohn Poptop

    Posted

    I am baffled.. They diagnosed you with CP by just looking at Amylase and Lipase? Couldn't that just have been AP? To me, it really doesn't sounds very odd, and you dont sound like a typical CP case. More like something towards gallbladder issues.

    I am of course not a doctor, but it seems weird. No MRCP, EUS, CT?

  • tomjohn
    tomjohn Poptop

    Posted

    Aaah I just read your reply again. You did show scaring. Alright. Well then consider yourself lucky to be a mild case! smile
    • Poptop
      Poptop tomjohn

      Posted

      Yep, think they did just about every test possible.  Do want to discuss more with my GI doctor, i.e. symptoms and how to manage.

       

  • wendy33852
    wendy33852 Poptop

    Posted

    If your condition is chronic it's with you forever. I've had CP sense 2013 from surgery until the past year I wasn't having all the problems that everyone was posting n I felt bad for everyone. Well it sure is making up for loss time. Yes to all your questions atleast for me. Keeping a journal is good that way u can tell which foods are not good for you to eat.

    Good luck with everything feel better and we're always here for support.

    Take care

    Wendy

    • Poptop
      Poptop wendy33852

      Posted

      Wendy, that's how I feel.  So many here are having so many problems and in such acute pain.  Almost felt bad saying I had a good day.  I joined to learn and hopefully support others even if all I can do is provide support and prayers.  Hopefully my CP will stay status quo for years to come with careful management. 
  • bonnie29
    bonnie29 Poptop

    Posted

    Sounds just like my first attack and diagnosis. In the beginning of my attacks i would rarely have to be admitted to the hospital and when i did it was only for a day or two. But as time progressed the stays got longer. As to your questions yes it was very common for me to get sudden pain that was gone just as sudden but i never knew how long the pain would last. They removed my gallbladder convinced that was the problem but it made no difference. As for bathroom issues unfortunately thats par for the course now. You basically have a whole list of things you wont be able to digest very well. Eat any of those and you will have more gas issues and other bathroom issues but it won't ever be just gone. At least wasnt for me. A gi specializing in the pancreas will be able to help ALOT. Good luck.

    Ps im post tpait now so that is why the past tense for everything.

  • Reefsider
    Reefsider Poptop

    Posted

    Hi again Poptop, I was doing a little research and came across this diet book for Chronic Pancreatitis I thought you'd be interested in.

    https://patient.info/forums/discuss/recipe-book-for-pancreatitis-515647

    It is printed on a or the Pancreas Foundation in America and the author is on the Board and also has her background and Pancreatitis story at the front so I won't repeat here.

    I've only glanced at it so far but it seems to be very comprehensive and I plan to try a few this week.  Good luck I hope it helps.

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.