EPI abdominal cramping

Update…I am having better results with taking 2 zenpep with every meal. I have abdominal cramping that will bring you to your knees if I just take one with a meal. Snacks too.
I was trying to see if one per meal would work…NOPE! The cramping and diarrhea is better controlled with 2 zenpep with every meal and snack. It’s expensive and I was trying to be judicious and thrifty.
Ahh yes, I admit that the dr was right. She had recommended 2 with meals and she was right! Sometimes my thriftiness can work against me, but those of you on Medicare understand completely!
It’s a journey for sure ever since 1982, that’s how long I have “limped” along after I was misdiagnosed for so many years. Y’all, please don’t give up searching for answers. It’s taken far too many years to receive answers because it mimics IBS-D.
There are NO perfect answers or meds. Zenpep isn’t a cure, and I have to take it for the rest of my life, but it will allow me some longevity and quality of life.
Those of us with EPI just have to take the enzymes, track every mouthful, and exercise.
Sounds simple, huh!?! All the while dealing with people misunderstanding what we have to deal with! People seem to take it so personally when you can’t eat their foods and especially desserts!
I’m hopeful though, and thankful for every new day. Those of us that struggle with EPI and it’s consequences are gastro warriors,
I don’t know about y’all, but for me I rather be n old gastro warrior than to succumb to giving up. There are still so many hugs, and adventures to come and I don’t want to miss any of it.
Take that Monday morning!
I’m here, I’m determined, and I’m NOT giving up! 🏃‍♀️🏃‍♀️🏃‍♀️

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Hi grannydee,
I'm so sorry you had such a long and difficult journey to get on the correct treatment. I'm happy to hear you're on your way to better health!

I wanted to thank you so much for your encouraging words in your above post! We're the same age, and I was recently diagnosed with EPI and also on Medicare. I'm trying to navigate all the information that's out there, including getting assistance to pay for Creon. Quite overwhelming, to say the least.

Reading your post was the medicine I needed. I hit bottom yesterday feeling so helpless and hopeless which is part of the five stages in accepting an illness. Those stages will come and go and come again, but I'm determined to get to acceptance in time and keep pushing on. Your post gave me the boost I needed to keep going with the right attitude. Tackling anything in life is all about the right attitude, and many times it takes a reset button to readjust your attitude and keep going.

I found you through your posts to @susanh824. I also replied to Susan and shared some of the other challenges I've been through. I hope Susan can get the right answers she needs very soon.

You are truly a blessing to all of us in this group.

Wishing you all the best and thank you again for your encouragement.

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Hi Winter2023,
I just replied to your note, but somehow I missed the part about you having EPI. Just wanted to say I’m sorry. I’m on Medicare due to disability from other conditions. If I do have EPI, I hope you, Grannydee and I can join to fight this together!
Hugs, Susan

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Hi grannydee,
I'm so sorry you had such a long and difficult journey to get on the correct treatment. I'm happy to hear you're on your way to better health!

I wanted to thank you so much for your encouraging words in your above post! We're the same age, and I was recently diagnosed with EPI and also on Medicare. I'm trying to navigate all the information that's out there, including getting assistance to pay for Creon. Quite overwhelming, to say the least.

Reading your post was the medicine I needed. I hit bottom yesterday feeling so helpless and hopeless which is part of the five stages in accepting an illness. Those stages will come and go and come again, but I'm determined to get to acceptance in time and keep pushing on. Your post gave me the boost I needed to keep going with the right attitude. Tackling anything in life is all about the right attitude, and many times it takes a reset button to readjust your attitude and keep going.

I found you through your posts to @susanh824. I also replied to Susan and shared some of the other challenges I've been through. I hope Susan can get the right answers she needs very soon.

You are truly a blessing to all of us in this group.

Wishing you all the best and thank you again for your encouragement.

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This condition is so difficult because it impacts every day. My 27-year-old daughter was diagnosed with EPI in November 2021. She had lost 40 pounds she did not have to lose and felt and looked terrible. She took a leave of absence from work because of the fatigue and just trying to live with it. She went through a period of feeling sorry for herself that she would have to live with this for the rest of her life.
It has been a journey but she is now at a normal weight and able to participate in life again. She is on Creon and at first was not taking enough. She has since learned how many she needs to take with a meal. Sometimes she needs to take some at the beginning and some in the middle. She did get prescription assistance through the manufacturer.
In addition, she suffers from occasional nausea and abdominal cramping. The gastro added one of prazole meds and that has helped. It is still a challenge and some days are worse than others but she is doing well.
Hope you find a point where it is not so intrusive in your life.

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Thank you so much. It’s been a journey for sure. I am using the collagen protein and bone broth too.

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Hi Granny Dee,
Do you need to take an enzyme pill when you drink bone both with collagen protein? The collage protein I'm using has 7g of protein.

Thanks so much.
Linda

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Well, you know I’m going to tell you to ask your Dr. and/or a licensed registered dietitian first!!! 😉
I will say that I doubt it will hurt if you don’t. But!
I’m not a dr!!! And I would recommend that you ALWAYS address these type of questions with your dr and a licensed registered dietitian.
EPI can vary from patient to patient as we each have different sensitivities to what we can digest, tolerate and ultimately thrive on throughout our lives.
It’s not a boring diagnosis!
So at least we have that! lol
You can probably tell that I have high hopes and expectations for all of us that have EPI.
I’m convinced that are many people that have probably been misdiagnosed due to the confusing symptoms that can mimic other conditions.
We ALL need to be on a mission to get the word out especially since there are so many “yahoos” out there trying to sell useless supplements that are touted to improve “gut health”. What a crock!
It’s a shame because people just want answers and there is NO supplement on earth that is going to “fix” EPI.
It’s a genetic disorder and the only way we will thrive is to take our “PERT”s and eat what is best for each of our individual tolerances.
PS: PERT - Pancreatic Enzyme Replacement Therapy-
I’m sure you knew this already 🫶🏽
All the best

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Hi Granny Dee,

Thank you for your note. I just started taking Creon this past Friday, so I'm navigating my way through taking it with all meals and snacks. I know it takes time to know whether the dosage I'm taking is working or needs to be adjusted. I'm hoping for the best outcome to feeling better.

All the best,
Linda

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