How did this happen?
Posted , 4 users are following.
Hey everyone. I am a 55 year old female and weighed 108. I quit smoking 3 years ago and have always felt pretty darn healthy. Havent been sick in quite some time. Mid November of 2016, symptoms started. Nausea and diarrhea. At first I thought I was coming down with the flu but 2 weeks later I still had diarrhea accompanied with pain and discomfort. Lost about 8 lbs. Could not get in to see doc right away, but a month went by and now stools are yellow and floating. Ive got a rash on my arm, shoulder and back . I also have something going on in my mouth. Pharmasist said could be ulcerations in my mouth. Finally seen gasterenterologist and had blood work and stool test done which came back positive for pancreatic insufficency. Doc put me on 25000 units 3 each meal 3 times a day. Thats 75000 units per meal. My 2nd appt was a month later and I was still feeling pain and little diarrhea, he raised it to 40000 units totaling 120000 units per meal. I just had another blood test done and MRI done last week which results have not come back yet. I do not drink and this is not in my family history. What is going on and how serious is this? Is it most likely I will be on this medicine for the rest of my life? This medicine is very expensive too.
0 likes, 7 replies
Reefsider ada7777
Posted
Hi Ada7777 it sure sounds like your experiencing the woes of Pancreatitis and you don't have to be a drinker to have it. I was surprised when I was told I have Chronic Pancreatitis as I have never consumed alcohol.
I'm assuming you are taking Creon which are digestive enzymes and I hope they're helping. They assist with digestion and it's important you take them immediately before you eat. Even when you have snacks take half your dose. They only work for 30 minutes so if having a long meal take more during the meal. They're not a drug in the usual sense they just help with digestion. There are other medical issues that can arise if you're not absorbing the nutrients in your food so it's important you take them even though they're expensive.
Dosage is bit of trial and error actually, if you need more take more. I find when my symptoms settle down I can take a little less. I was taking 120000, sometimes more, but I've been doing ok on 80000 for the past couple of weeks. Yes you will need to continue to take them, especially if you have Chronic Pancreatitis.
Diet is very important, you need to change to a low fat diet you'll find you'll have fewer digestion issues. You really have to be serious about your diet, it's not as difficult as you might think and could mean you can take less of the digestive enzymes.
The pancreas is a specialist study, not all gastroenterologists know much about it so it might be worth finding a gastro who specialises in the pancreas, it can make a big difference.
Yes this is serious, it has to be constantly managed especially if you have Chronic Pancreatitis. You also have to consciously look after yourself, adopt a low fat diet for life, never drink alcohol and give up smoking which is also bad for pancreatitis, (if you smoke).
Unfortunately Pancreatitis is one of those diseases that you're constantly aware of and have to constantly manage, it's not fun but can be managed most of the time. Let us know how the MRI turns out and good luck.
ada7777 Reefsider
Posted
Reefsider ada7777
Posted
Hi again ada7777. It's good news that the MRI was normal, it didn't show cancer, generally what the MRI is looking for.
Pancreatitis is inflammation which can be caused by alcohol, hereditary, autoimmune or be idiopathic which basically means they don't have a clue why you have it.
It doesn't sound like you have confidence in your gastroenterologist. That's fine you can change your doc. I would suggest strongly that you find a gastroenterologist who specialises in the pancreas. Ask your GP to check around for you, university hospitals are a good source of info too.
I see a pancreas specialist every 3 months unless something's up. I have blood tests and sometimes scans.
Ada have you had your bone density checked? That's important especially with your malabsorption issues. It's not a blood test, it's like an x-ray, ask about it. I also have to take supplements because of the vitamin deficiencies caused by my malabsorption issues.
You should be taking your zenpep 5-6 times a day. Half doses for snacks.
Lets talk about your diet which might answer your question about feeling gassy and bloat and having pain after you eat (even though you're taking your zenpep).
White bread is no good now, go for wholemeal, don't use butter or margarine or any high fat spread. Avocado's are not good for us, high in fats even though they contain some good fat. We just can't digest it, so they're off your menu forever.
Convenience foods are high in fat generally, check labels when shopping, no fast foods, pizza is a memory now, skinless chicken breast is good, fish is good, very lean everything. Egg whites are good the occasional egg yolk is ok as we still need some good fat or we won't survive. Vegetables are fine, all of them, however because I bloat too my gastro guy suggested I cut out cruciferous veg. It's helped a bit. Look up low fat diets and recipes online. You must stick to low fat, there's no going back,,, ever! Yes it's totally unfair but it is what it is.
Eat only small amounts often not 3 meals a day as before. Never forget that the reason you're having symptoms is because your body can't digest food so don't eat a lot in one sitting, you're asking for trouble. Little meals often is the way to go.
The fact you're having yellow stools etc means your pancreas is flaring so what you do is stop eating for a couple of days, yes stop altogether, drink water, give your pancreas a chance to recover. If you were in hospital they would fast you, nothing by mouth, IV fluids and pain meds only. Treating yourself at home when you detect problems can sort it just as well and more comfortably (unless there are complications of course).
Take you zenpep immediately before food, take during meal if it goes longer than 30 minutes, take after meal if you start feeling uncomfortable straight away (latter is latest advice from my doc).
Eat little and often
Only eat low fat home prepared meals
drink plenty of water
take your enzymes
Do I sound like a broken record lol, you have to get used to this ada, I was diagnosed just over a year ago, Chronic Autoimmune Pancreatitis.
Reefsider ada7777
Posted
PS because I've never been a drinker I can forget about mentioning alcohol. You can't drink alcohol ada7777, ever! Alcohol inflames the pancreas.
Imagine all alcohol and fatty foods are poison because for us they are. You'd never deliberately take poison would you?
ada7777 Reefsider
Posted
Thanks you so much. This is very valuable info for me.
No, Ive never had a bone density test, I guess I will have to suggest having one done. Why do we have to ask, shouldnt these be considered by the doctor?
I quit smoking 3 years ago and dont think to ever smoke again. Dont drink either and dont think that will ever be a problem either. BUT when you say never again pizza, Im sure chips and salsa are on that list of "dont have". That really tears me up. And Im sure it will physically as well.
That is just depressing.
So I was thinking about smoothies made with of course all the good veggies. Wouldnt that be easy to digest? Also, is V8 good? Canned tuna? Im thinking of buying a dehydrator for my fruits and vegtables or would that take away some of the enzymes?
I was sprouting mung beans and garbonzo beans. I like the mung beans better but there not that tasty. Suppose to be high in lipease enzymes i believe.
Ive heard of people opening up the capsules and sprinkling it on their food. Is that okay?
I just dont see my GI ever getting back with me on these questions. They are much too busy.
I was going to start that fasting and Im already hungry but stomach still hurts. I will remember what you did said about imagining alcohol and fatty foods being poison. But it all smells so good. LOL Thanks again and please keep sharing if you can any new or old info that I can use. I do appreciate it.
Reefsider ada7777
Posted
Fruit and veg are fine Ada7777, chicken breast grilled, steamed, roasted on a trivet, same with fish, canned tuna is fine just not in oil. Salsa should be fine, the chips not so much if fried, make chips from thin sliced vegetables roasted dry, very yum.
NO don't open the capsules, swallow whole. They make a point about that. Doc's say they can be opened and sprinkled on apple sauce or the like for babies who can't swallow capsules yet, but not adults, do it properly Ada.
You need the digestive enzymes, nothing to do with removing them from your veg. You aren't producing enough that's why you're taking the Zenpep.
You need to understand what pancreatitis is doing to you Ada. Here's a simple, overly simple, but hopefully enough info to help you understand what's going on.
The pancreas is both an endocrine and exocrine gland (as is the liver) which produces products via a duct.
The endocrine gland excretes it's substances directly into the bloodstream.
The exocrine gland excretes bile and pancreatic juice into the gastrointestinal tract through a series of ducts. This is the one that isn't functioning properly for you. If the gastrointestinal tract doesn't receive those products or doesn't receive enough, our food can't be digested and we can't absorb the nutrients from our food. Obviously if we aren't absorbing nutrients from our food it can cause a lot of health problems.
Sometimes things like alcohol can trigger a pancreatic response and cause an acute situation. If alcohol is eliminated and a low fat diet followed the pancreas can sometimes recover and be ok. That person should avoid alcohol and fatty foods however to hopefully prevent a recurrence of Acute Pancreatitis.
If one has Chronic Pancreatitis it means the damage to the pancreas is (usually) beyond repair and it gets worse over time. One has to be very careful about diet always as serious sometimes life threatening situations can occur.
By taking your Zenpep which are digestive enzymes, you are helping your body digest food and reduce malabsorption issues. By eating a low fat diet and avoiding alcohol you are helping to prevent the inflammation of your pancreas which causes pain and diarrohea. Eating small meals often helps the digestive process of a damaged pancreas. The enzymes, your Zenpep, help with that process but it isn't a miracle cure, everytime you eat you have to take it as it only helps with the particular meal you're eating at the time.
Have a look at thepancreasfoundation website and go to the nutrition section and download the recipe book.
Good luck ada,I hope I've helped a little, keep in touch.
ada7777 Reefsider
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