Hereditary pancreatitis pain

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Since my first question on here, I have found out the cause of my chronic pancreatitis since no gallstones were found and I don't smoke or drink. I had a blood test which said it was hereditary.

I haven't heard anything since but have been on Creon -enzyme replacements for a while.

However, my stomach aches have been getting worse, I can't go a day without one. I was advised to play around with the amount of Creon taken with meals to see if I need more or less.

I have tried taking less or no Creon incase it was causing constipation pains but that just means running to the toilet a lot of the time which is messing with my insulin and sugar levels.

I have noticed feeling fuller a lot earlier than before so not eating as much.

The question is the stomach aches are driving me insane has anyone got any suggestions?

I'm not sure why they're happening, haven't noticed specific foods. I feel as if I'm having to choose to put up with them or see if not taking creon for a period of times works but cope with the toilet issue sorry tmi.

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  • Posted

    Hello and a Happy and healthy New Year ! 

    Have you tried eating little or nothing and then gradually introducing foods to see if they effect your stomach? As you probably know the pancreas is highly sensitive to alcohol and fat. So, in order to avoid pain, you need to avoid these two causes. Alcohol completely, whether the cause of your pancreatitis is due to hereditary factors or not, and fat in the form of animal fats such as meat and dairy products.

    I'm getting the impression that you are eating a 'normal' diet and using creon instead of following what we pancreatitis sufferers can and should be eating, which is a very restricted diet of fruit and vegetables and as little fat as possible. I was diagnosed a year ago with acute pancreatitis, and although I drank very little alcohol, the doctors told me to give it up completely. I'm in the same boat as yourself. I get pains in my right abdomen every few days. They come and go. If I eat or drink anything with cream, milk { which I like} or meat such as pork,ham, beef or duck I'll get the pains worse. The problem is that there is a tendency to eat just about anything when you feel OK. But, later you pay the price with stomach or abdominal pains. So, I think that there is just one solution and that is to eat very little and frequently and avoid big meals. Don't eat fat or drink alcohol ever.

    It's not easy, but it gets easier in time and patience and perserverance are necessary.

    Can you explain more how the blood test indicated that your pancreatitis was hereditary ? I heard that Coeliac Disease is a factor in pancreatitis, and it too is hereditary. In any event, no matter what the origninal cause, the important thing is to treat the condition effectively.

    Good luck and good health,

    Pete.       

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    • Posted

      Thanks Pete,

      ?I was sent to a gene clinic as they couldn't find why i had chronic pancreatitis so young. I don't drink and have never smoked, couldn't find any gallstones and already had type 1 diabetes before the pancreatitis developed. They took some blood and it took quite a few months for the results results to come back. The doc said if it isn't hereditary they aren't going to find out what is causing it and would call it idiopathic. Being diabetic i have been tested a few times for coeliac diease which was negative. I have also had an eus which found i had 2 ducts going through my pancreas instead of the usual 1.

      ?You are right, i've not been eating the best, so if i want to try and reduce this stomach pain i need to look at my diet, i've just been trying anything.

      ?However, the only meat i eat is chicken, not vegetarian just simply not like the taste of anything else.

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  • Posted

    Hi rwls, hopefully I'll find out what caused my CP after the study, which hasn't begun yet.  It's good to know why even if it doesn't change the outcome.

    Most posts I read tell of sharp pain, I tend to get a stomach ache like you maybe.  It's bearable most of the time, unbearable in short bursts, and because I can react to medications I tend not to take anything for it.  Mine usually settle down, go away after awhile.  They happen any time, not just after eating and I tend to not leave the house in case they're leading to a toilet dash.  Very annoying. 

    I've wondered about the Creon as well and have done as you have but I too find I spend more time running to the loo if I cut down.  I don't see my pancreas guy until April and there's no point asking my GP so if you find out why and what to do about it please let us know. 

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  • Posted

    Hi, I just wanted to comment on the cause of your pancreatitis. I also have 2 ducts instead of 1. It's a congenital condition called pancreas divisum. For years I have been suffering from pancreatitis but it became unbearable about 2 years ago. No one could figure out what was causing it. It wasn't alcohol, gallstones or anything else. I was 40 lbs underweight and in excruciating pain 24/7. Finally, thank God, a gastroenterologist in the ER figured out that I had pancreas divisum. (So in utero, the 2 ducts are supposed to fuse together to make one larger duct. When that doesn't happen, like in our case, we end up with 2 ducts which can be too narrow. Over the years of my life, they slowly became blocked. That's what caused all the pain and pancreatitis. Does that make sense?) Anyway, they put stents in the pancreatic duct and the bile duct. They started with the smallest stents and every 3 months for the past 2 years, they have replaced the stents with larger ones. I cannot tell you how much better life is now. After about 6 months I gained 30 lbs (I looked like a skeleton ( and the pain has been completely GONE!!!!!! My life was soooooo miserable due to the pain. While the stents aren't a permanent fix, if you are suffering from the same cause as I, the stents will probably help you. (If the ducts are too narrow or becoming blocked) they do it via an ERCP outpatient procedure. It has completely changed my life. I also eat lightly (also only chicken 😉wink but that didn't really matter. When i was at my worst I couldn't even tolerate a sip of juice let alone food. I wish you the best and I hope my comment helped.

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