Chronic Pancreatitis

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I was just diagnosed with Chronic Pancreatitis. I have just been through 5 days of liquid only or close to it (been eating some broth with rice in it). Anyway, I have not slept at all because of the incredible pain. When will this pain go away! I have done the hydrocodone, tramodol route and felt even worse because constipation. Any insight into how to manage this disease would be welcomed.

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25 Replies

  • Posted

    Hi Ann,

    I was also just recently diagnosed with the same. As far as pain, tramadol is essentially worthless. But my pain was directly related to eating. I ran into a renowned GI from India who was on holiday in Kenya where I am. Off the bat he prescribed CREON 10000 ( not sure if it's sold under the same name where you are. I take 40,000 units (4 capsules) immediately before eating and for the last 3 weeks I've been on Creon I've had zero pain. The way I understand it is that pain can be as a result of the pancreas trying to produce enzymes to digest the food you've eaten but Creon has 3 enzymes (Lipase, Amylase and Protease) that basically allow the pancreas to "rest".

    I'd suggest you ask your Dr. if Creon 10,000 would work for you.

    PS. I'm headed to the Asian Institute of Gastroenterology in India next month for 2 procedures ( an ECSL and an ERCP) that may take me off drugs and able to continue with a decent quality of life.

    I know you may be scared by the diagnosis, I know I was petrified, but keep hope alive and if you're good for Creon 10000 everything will get much better. Oh, last thing, if you smoke or drink, you MUST stop immediately otherwise every effort will be for nought.

    Best wishes my fellow sufferer Ann.

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    • Posted

      Hi Steve, we're all here to learn and share tips so I'm pleased one of my tips has helped you.  Yes Creon is expensive when not on national health, I'm lucky it's covered here in Australia as I take a lot of it.

      What is an ECSL procedure?  I'm not familiar with that one.  I've had an ERCP which confirmed what the CT showed and confirmed my CP diagnosis but I don't think I've heard of an ECSL.  Thanks

       

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  • Posted

    I pray that you all fully recover. I have a question do chronic pancreatitis sufferers feel pain with movement, I mean does movement aggravate or touch pain or is the pain not effected by movement at all?
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  • Posted

    Hi Ann, sorry you have CP it can be pretty nasty however if you're careful it can be managed and on the bright side people with CP tend to have less pain than those with AP, so woohoo we're lucky lol. 

    Steve's advice re Creon is good however the amount of Creon required can be different for each person.  I take 4x25,000 capsules immediately before my meals and mostly 3 before a snack like my toast in the morning.  They say take half your usual dose before snacks but I need a bit more.

    Creon only lasts for 30 minutes according to my pancreas specialist so if you're having a long meal with friends or family take more Creon during the meal.  I sometimes need it after I've eaten as well.

    Creon can make one constipated so ensure you have something like Movicol on hand.  I take 4 pkts a day for a week then break for a week.  That's once you've got your food intake sorted of course.

    You must go onto a low fat diet, no debate about this and there's plenty of variety to satisfy.  I included a link to a recipe book for pancreatitis here somewhere.  You cannot take alcohol at all, ever, or smoke either.

    Your meals should be small, not a lot of red meat either, easy to digest foods are best.  You should eat 4-6 small meals a day rather than 3 large ones.  Low fat does not mean no fat, we need some fat.  Plenty of fluids should be taken too.  

    Ann once you've settled a bit and have started looking at what you can eat and you adopt the advice you'll find your pain settles right down.  Good luck.

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    • Posted

      Thanks for the tips and encouragement. This is just miserable right now. One other question, as time goes on and I get some of this under control, if there are more "flare ups" of pain, are those times when you have to go back to just a fluid diet for a while?

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    • Posted

      Yes Ann, if you have a painful flare the best way to settle it down is to not eat for a couple of days to rest your pancreas.  You do have to ensure you keep your fluids up, perhaps have some electrolyte drinks on hand if you're vomiting or have diarrhoea.  If the flare is bad or continues after a couple of days you really need to be in hospital where IV fluids and pain management will be applied.  Use common sense and stay calm, stress makes everything worse.

      I tend to get a general stomach ache, uncomfortable but not too bad when I have a flare up and I tend not to feel like eating much.  Listen to your body.

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    • Posted

      Reefsider, Yes, I now understand to listen to my body. It said to me the other day just stay with bouillon and water, no fruit for now and now rice in the bouillon. I think that is why I finally got some pain relief and some sleep last night! This is tough.

      I have been reading about pancreatitis and the life style changes that are needed and somewhere in the back of my mind I think I will be able to go back to my old ways, but then the more read, it sounds like the life style changes are going to be for life, right! Thanks and it is nice to chat with another who has gone through this.

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    • Posted

      Ann I don't know what your 'old ways' were but to be clear about your situation you need to understand that Chronic Pancreatitis does not get better.  CP tends to get worse over time hence the common use of the word 'management' when discussing it.  And yes the changes to your lifestyle are for life, forever, no going back.  

      Life might settle down after this attack has passed and you might be tempted to return to your old ways thinking you've got this sorted.  Ann you will be wrong, very wrong, There are many complications that can arise, some life-threatening, you need to realise this is a very serious disease.

      There are people who have followed every bit of advice and still succumbed.  Also realise that we with Chronic Pancreatitis are also at risk of Pancreatic Cancer so we tend to do whatever we can to prevent that from happening. 

      Follow the lifestyle rules and you have a good chance of living a long life.

       

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    • Posted

      Hi, you kindly replied to me on my post a few days ago. Since Wednesday I have been eating more veg and lower fat foods and my abdominal pain hasn’t completely gone but it is definitely so much better. My question to you is what kind of foods should I be eating as I’m very fussy, I don’t eat many meats, I won’t eat seafood at all and I have never been a fan of many fruits or veg. I’m really struggling as my appetite has decreased and the thought of more veg and chicken is making me bored with eating. Any advice would be very welcome thanks.
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    • Posted

      In my understanding, you're eating the right foods and avoiding the wrong ones. I did that too but I kept losing weight drastically. This was as a result of malabsorption. To put it very simply, without going on Creon 10000 I would most probably be dead by now due to malabsorption. Creon has saved my life. I'm not exaggerating this.

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    • Posted

      I’m still waiting for my stool sample results so I have no idea what’s going on. My diet has been extremely bad for years (started at the age of 13, I’m now 40) all I know is between April (iron deficiency) and August (folic acid) and to keep an eye on my B12 levels I have been slowly getting worse 
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    • Posted

      I'm also 40 and my problem is betweeh 16-38 I drank and smoked very, very heavily against all medical advice. This is payback and I absolutely deserve it. I hope your stool results reveal a situation that can be remedied and hopefully remedied quickly.

      All the best in this.

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    • Posted

      Thank you 😊 I don’t drink and I quit smoking nearly 15 years ago (December) My problem has always been my diet, so I have no one to blame but me.  At the moment the doctor thinks malabsorption problems but I really don’t know as I haven’t lost weight.

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    • Posted

      I'm so pleased to hear that your flare is settling down Wendy.  Don't eat too much at one sitting, rather increase the number of times you eat during the day.

      I mentioned that I'd posted a recipe book ages ago and I just went to check it out and it's been locked due to lack of interest wow! so I've posted another link.  It has to be moderated before it's available which should only take a day so look out for that.  The heading is Recipe and Menu ideas for Pancreatitis, I think that's how I titled it.

      You just have to start looking for fish you do like, I eat canned tuna with salad 2 or 3 times a week for lunch rather than buying fish as I don't like the smell of most actually.  I make porridge (oatmeal) for breakfast often, I've always loved that and I'll have 2 or 3 eggs a week, not all at once lol.  I have multigrain toast for breakfast and I drink coffee.  I also have avocado toast sometimes, only once or twice a month.  Not a whole avo, they have good fat but I like to allow room to use a bit of good olive oil for cooking later so I don't go over my daily allowance.  I like a few fruits and love vegetables and steam 4 or 5 to eat daily with my meals which I prepare in a million different ways. I love stir fries for instance.  I'll also buy a pork cutlet (very low fat) once or twice a month, and do mushrooms a couple of times a week.  I can eat a bit of rice and quinoa and I've found a low fat milk that tastes like real milk so that's a bonus. Whilst I'm raving on here I'm just trying to show you that it's not that hard to eat well and feel satisfied.  I made myself a small chicken schnitzel with a herby crust and salad earlier which was yum.  I eat lots more I just can't think at the moment.

      Don't eat any fatty or fried foods that's an easy rule to remember.

      Wendy think of it this way.  Food is your medicine, it's important you have it and it's important for it to be the best you acquire for your disease.

      If you have malabsorption issues, which I think you have, you won't feel much like eating and you'll be lacking nutrients.  In other words you probably have malnutrition (I have).  It's important your nutrient levels are checked frequently and supplements taken if required.  I have to take supplements all the time.  You can do this, believe it!

       

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    • Posted

      Thank you for the advice. I don’t eat any seafood as I detest the taste. The meat I like are chicken and turkey. Veg are broccoli, peas, carrots, sweet corn and sprouts. If I have a salad (lettuce, cucumber, tomatoes etc) I still get pains. For the past 3 days I have had chicken, potatoes and various veg. Today I tried a southern fried chicken wrap and yes my pains are back, it would be great to have answers and hopefully soon I will.
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    • Posted

      Sorry to break it down to you but CP GETS BETTER in time if you take care of yourself and introduce right foods and supplements! You should not be eating more than 20 grams of fat x dat, beside you need to introduce grape seed ex tract and grapefruit seed e xtract daily to reduce inflammation in your pancreas, taking enzymes with all i mentioned above will actually gives your pancreas to heal and in some cases they've seen cell generations !

      Have a good day.

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    • Posted

      I don't eat more than 20gm fat pd, 10gm in one sitting.  That's a pretty basic bit of knowledge.  I don't recall stating exactly how much I have.  I also haven't stated exactly what I do take supplement wise.  Are you responding to someone else's post?

      Gosh where is that research that says CP is curable I've not found it but would love to read the study.  Thanks.

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    • Posted

      Wendy because you're just getting over a flare stay away from broccoli and sprouts for awhile.  Cruciferous veg tend create gas and therefore discomfort especially for you at the moment.  Chicken and turkey breasts are fine.  I use a little veg or chicken stock to cook with it works just as well as and instead of oil in the frypan. 

      I also have a spray container measured into 1 and 1/2 tablespoon levels of a good olive oil which I like to cook with.  That's about 10grams which is the max amount of fat one can have in one sitting.  You can have 2 of those a day but that's the fat allowance for the day and I like to know I can have a little more in something else like my low fat milk.  For my schnitzel tonight I just did a light spray on the crumb, way less than the 10grams.

      I've always eaten this way, not quite as strict as I have to be now, and I've always prepared from scratch.  I've also never had fast food of any kind in my life and have always hated fried food and never liked sweets.  I've also never touched alcohol. 

      I don't believe any of us deserve this disease so don't blame yourself for past choices, it is what it is and all we can do is learn to live our best life with it and treat ourselves kindly.  That includes you Steve.

      My partner was a severe, chronic alcoholic who had the healthiest body for a man of his age.  His doctors couldn't believe it, every test was perfect and I can't begin to tell you how horrid his addiction was.  He did suffer depression however.  I ate well, never swallowed a drop of alcohol in my life, kept myself fit and I was given the CP diagnosis, go figure.

       

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    • Posted

      I haven’t been diagnosed with anything other than low iron and folate levels so I really don’t know what to do for the best. I was told more fruit and veg but there really isn’t many things I like. My appetite is really bad in the mornings but just the thought of more veg is making it harder to eat and get any enjoyment out of it.
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