... Discovered in a CT scan. First question was how much do you drink? answer maybe one drink every 3-4 months. Dr prescribed Creon 20, took it first day, next am sore throat, same for days 2 & 3 day 4 could not speak and throat hurt really bad. Did not take pills on Sunday, am could speak & swallow. Called Dr - took me off Creon and wants me to go to Houston to have an EUS. I am under the impression that I really need these pills, have lost 34 lbs in about 4 months.Have done lots of reshearch on line - Dr did not tell me much - just that if the pills did not work would want to look again for Pan Cancer. I must admit that I am scared. I have pain if I eat,(or not) pain under ribs and around my back, cannot sit in same position for very long with out hurting and wake up in the am thinking I needed a new mattress, what a way to discover that the mattress is not bad!
I am so confused. For 2 years with no answer.
After 2+ years of diaherra, bloating nausea and pain I was finally told I have Chronic Pancreatitis?
Question posted by BettyJD on 19 March 2013
Last updated on 30 June 2013
4 Answers
It sounds like you could have an allergy to pork proteins. If that is the case it is really hard to take any enzymes. I would try another prescription like pancreaze. It is the same as Creon, different manufacture, slightly different ingredients. That would confirm allergy to the pork or something else. I have better luck with pancreaze. I found that most doctors dont understand pancreatitis, so going to the right doctor makes a huge difference. These enzymes (Creon) do not help with pain at all. These are only to help digest food. The diarrhea is mostly from passing undigested fat because of the lack of enzymes. That causes many issues like gas, bloating etc... I can answer more questions if you would like or explain more when I get to a computer.
Oh, I sure hope not. what would I do if I cannot take creon? The google info on pancreaze says it is made with Pork? What would that tell me? I was diagnosed at UCLA from a ct scan and endoscopy. I have eaten pork a lot, have no idea if I am allergic? How can I find out, is there a test they can do to find out? I don't have panceatitis. I do have thicken stomach walls. I just can't stand the amt. of diarrhea I still get on this medicine! I know it has to be something I am still eating, but lately just went back to brat diet until diarrhea clears, 2 days now. I will go back to "low residue" diet, very low fiber, no more than 15 g soluble fiber a day. This was the diet that was supposed to fix me.
I did have fat in my stool before taking this, that was why I was given the creon.
I have had some good times on them and bad times on them, I don't get why it can work well for many days, then ends up as diarrhea. I have given up many foods thinking that was the cause. They have re-checked for fat in my stool, was good. The test proved the Creon was working. Dr's in Maui, not very good. That is why I went to ucla. I used to have fat floating on top of the water, so I know its not doing that, but am still having trouble with diarrhea. I do have terrible amts of gas, bloating, fullness feeling a lot of the time. If you have any more ideas when you get to your computer please do. I am afraid I am going to die if I get sick, my BMI is 16! I cannot seem to gain any weight.
Have you seen a gastroenterologist? If you haven't' it would be very helpful. How much Creon do you take and size? I take mt20, 4 a meal, and sometines I have problems. Creon, pancreaze etc... are all enzymes. Three amylase, protease, lipase. Each one just has different enzyme counts, or various different ingredients. They are dosed by the amylase, mt16,= 16,000. They are all made from pork/pigs via extracting the enzymes from them. I personally had much better luck with the pancreaze. If your loosing weight and no gain, and you are enzyme deficient, with fatty stool, it seems that you need more Creon. What has caused you to be enzyme deficient? Usually caused by pancreatitis or cysticfibrosis.
I was told that my Pancreas wasn't making any enzymes, so I was prescribed Creon, 24,000 lipase, protease 76,000, amylase 120,000 units. This took about 2 months to figure it out, tons of stool tests, CT scan showed thickened stomach, got to the diagnosis at UCLA. My disease, is Hemochromatosis has done in my Pancreas, getting tests now to see if I am actually diabetic now?
It seems to me that I cannot control it at all as this is called a "functional stomach disorder" I have seen a local GI Dr, here in Maui. He is just getting up to speed on what I have gone through. He seems to know enough about enzymes, getting blood tests on Monday.
When it was diagnosed I was told it was caused by my disease, Hemochromatosis. It is a iron over load condition, genetic disease. It does kill most pancreas, and liver. I don't understand why it doesn't control the diarrhea? I had diarrhea for a long time before I could get diagnosed, lost a lot of weight and I can't seem to gain. Now I have been told its very hard gain weight on enzymes, yuck I only weigh 103 pounds and I am 5' 7"! any advice is helpful?
To Bettyjd
I was diagnosed with Pancreas insuf. due to my disease. I have hemochromatosis which has damaged my Pancreas, now taking Creon for this and having lots of diarrhea, which was mostly the same as your story. It started in nov. 2011! I used to weigh about 130, now at 104 lbs, and I am 5' 7" I was put on enzymes so I could digest oil, it has worked on and off, I wonder if anyone else thinks these pills are too much to buy and they can go bad if they exposed to any heat above 77 deg.? I do live in Maui, so it is hot here and mine seem to go bad. It never seems to completely work to control the diarrhea? I am very frustrated, have spent 5 months of the last year in Los Angeles, trying to make things better. Not good to take these drugs! But I think if you describing some symptoms of my disease, might ask your Dr. to run a dna test to see if you have Hemochromatosis? Esp if you have any irish, blood, this is the disease that people in Ireland 1 in 4 people.
There were always people dying of this disease, people that said they did NOT drink and still having trouble with their liver, due to this disease. My Pancreas doesn't make digestive enzymes anymore, that is why I am on creon, 24,000 units.
I know if you don't get the pills down easy they can break up in mouth or throat, hurts bad but just for one day usually. I am having some of the same symptoms as you are. Now my weight is at crisis level low. I would get that test done and that way they might find the problem? I hope you can stop the diarrhea, I can't take much more diarrhea, had it for 2 years myself! Hope this helps!
Teri
I have had pancreatitis all my life. Was not diagnosed until I was in my early 20's. It has progressed to calcific pancreatitis, which means it is calcifying or stoning. I have to rely on digestive enzymes and I am also now a full diabetic because of it. The enzymes prescription will do absolutely nothing for helping your pain. It only helps with malnutrition. The diarrhea in my case comes from not having enough enzymes, thus not digesting fat and passing through. Being short of enzyme lipase will result in poor digestion of fats. Amylase is starches and protease is for protein. The big give away for high fat stool in light in color(whitish and or pale) and if if is real bad the stool will be liquid fat, best described vegetable oil like. In the same scenario with lack of amylase has a very very offensive smell that could be described as rotten potato like smell. If you have fatty stool diarrhea, I would bet that you are short of enzymes.
As chronic pancreatitis causes damage to the pancreas you become mode deficient in enzyme. The damage comes from the enzymes of the pancrease "digesting" ifself, thus is where the intense pain comes from. When you have a bout of pancreatitis, every time you eat the body releases enzyme, because of swelling from pancreatitis the enzymes have no where to go and the enzymes act on the pancrease. That is why you have pain when you eat. It is rough but the only way to get over it with out more damage and pain is to only drink water, no food until the pain is almost manageable then move to clear liquids like apple juice jello etc... then gradually tolerable foods. If pain is severe going to the er and going on Iv liquids is neccesary. Ignoring it will make things much worse for you later. Most doctors are not well familiar with pancreatitis, most only now the basics of it and not enough for chronic conditions. You will have to see a gastroentorologist. Half of my problems could have been prevented by seeing one before I did, and not messing around with general doctors. Hope that helps.
I feel ya i'm going through what they wonna call a episode as we speak . The pain is awful as u said if u eat u hurt if u don't u hurt .. u only keep fluids in you and u still on the toilet and ur thinking y and how??? I have always been a heavy set girl well 3 yrs ago in 2 months I went from 160 to 114 .I was also asked the question how much u drink ? When u say u don't they look at u like u are stupid ..I was in hospital 3 weeks 4 pints of blood ,, no food , fluids after fluids , test after test they say after I don't go through dts from being in hosptial U will never get better , u will have pain and u will have episodes some worse than others ..WHAT DO U SAY OR DO TO THAT?? They r suppose to help u not b heartless but they assume u r lying and u are hiding past drinking or u drinking still like one night u went to bed and said please god let me wake up with this condition and hurt for the rest of my life and never get better.
And for kicks let them not prescribe me any pain meds because others abuse theirs or sell them ..My grandfather past away in 1989 from Pan Cancer and he never touched a drop..I am sick and hurting and noone to help..My kids see me fading away day by day they see the pain the not eating the running to the bathroom but what can u do ?? And I am only 37 with 5 kids 19 , 17, 14, 11 ,9 months the last one was a great surprize was on depo shot and still got pregnant. I get so sick of hearing I hurt I sick i tired you have no idea ... Dunno if I helped or vented but thought I would share.
Are you on the Creon? Does it work for you, not sure what to do with the Dr telling me not to take it, don't we have to take the Creon??
Chose this character because this is how I feel these days... and she is NOT smiling. Turned 60 and fell apart!
I really don't take anything except what I can find for myself after the docs wouldn't help and told me it would forever b this way I lost all faith in docs and I didnt go to just one .
I was on Creon but I refuse to take it because sometimes the taste makes me throw up. I had one episode that took me a year to recover from. I survived on baby food. I was admitted to the hospital 8 times and in the ER 16 times. Today, I am off Creon and can eat food again. I haven't thrown up in months. I still get nauseous and some pain, but there is light at the end of the tunnel!
I am writing this for my mother who is 78. She doesn't use a computer much so I am trying to help her out. She has been suffering with Chronic Pancreatitis for the past six years. She is sick everyday with pain and nausea. She feels she is just existing and her life is non-existent. She takes Opana for pain, Cymbalta for depression, Ativan for anxiety, and phenergan for nausea. She has also been diagnosed with Celiac disease. She stays on a low fat diet, and follows a strict gluten- free diet. She is also supposed to take Creon, but admits she skips from time-to-time. My mother wishes her end would come and it just breaks my heart because she was so active at one time. I miss my mom, and I can't stand to see her suffer. She just wants to talk to someone, anyone, that shares her same illness. If there is anyone out there suffering like this, please get in touch with her and just give her some hope.
I told her about support blogs, but she would just like to talk to someone with the same illness. We have gone to Johns Hopkins, the Cleveland Clinic, and are thinking about the Mayo Clinic next. She is so desperate for relief. Her telephone number is 804-861-2107. My phone number is 757-403-8799. Thank you and God Bless.
Related topics
creon 20, pancreatitis, chronic pancreatitis, pain, nausea/vomiting, abdominal distension, creon, chronic
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