EPI abdominal cramping

Posted by grannydee @grannydee, Jan 1 11:06am

I’m still taking Zenpep and track every bite of food that I eat. (No sugar, no high fat, etc.
Trying to get 1200-1500 calories a day and it’s difficult, the pain makes me nauseous.
I’m down to 105 and starting to look like a refugee. I’m baffled and Gastro dr is too.
I can’t take aspirin, ibuprofen or Tylenol so I have to endure the pain. Got about 3 hours of sleep last night.

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Good morning Grannydee. My heart goes out to you. Your situation is difficult. 105 pounds is very low. My dad went through a similar process following an illness and surgery. There is a term called cachexia, and while it is labeled a syndrome, it occurs as a spectrum of severity of “wasting”. As a team, my siblings and I were able reverse his…. Gradually. My first question is “What can you eat?”. For my Dad, we placed small amounts of his favorite foods all around. He “nibbled” as tolerated, because his “taste buds” were altered. We did not push. No expectations for “nutrition” at this point. As the nausea decreased (this took weeks), he was able to broaden variety of the foods. He had more energy. The whole process took months. We were able to bring him home from the hospital and continued at home. The Cachexia process is hard to reverse, and becomes more challenging to do so the longer one is into it. There are little dietary pearls of ways to slip extra nutrition into traditionally non-nutritious foods. The tastes which appeal to you right are the most important thing to think about. You might want to consider looking at these strategies. I hope you can reverse this. I hope your pain declines.

REPLY

To Grannydee. Just a little pearl to start… try bone broth with soluble collagen protein powder , seasoned to taste. Well cooked Vegetables added as tolerated. Use white rice, on the side as tolerated. The high protein in these two sources (bone broth and collagen powder) is soluble, without taste, and more easily digested (already dissolved) when there is a lack of digestive enzymes. You have control over the taste profiles. Soup is versatile. I hope this helps.

REPLY
@upartist

Good morning Grannydee. My heart goes out to you. Your situation is difficult. 105 pounds is very low. My dad went through a similar process following an illness and surgery. There is a term called cachexia, and while it is labeled a syndrome, it occurs as a spectrum of severity of “wasting”. As a team, my siblings and I were able reverse his…. Gradually. My first question is “What can you eat?”. For my Dad, we placed small amounts of his favorite foods all around. He “nibbled” as tolerated, because his “taste buds” were altered. We did not push. No expectations for “nutrition” at this point. As the nausea decreased (this took weeks), he was able to broaden variety of the foods. He had more energy. The whole process took months. We were able to bring him home from the hospital and continued at home. The Cachexia process is hard to reverse, and becomes more challenging to do so the longer one is into it. There are little dietary pearls of ways to slip extra nutrition into traditionally non-nutritious foods. The tastes which appeal to you right are the most important thing to think about. You might want to consider looking at these strategies. I hope you can reverse this. I hope your pain declines.

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Thank you so much. I hope it will settle down, however I also realize that regardless of the pain, I have to use the zenpep to ensure that my nutrition is taken care of and move forward.
It’s not a cure but it is required and I’m thankful to finally have some answers.
Also an update on the prescription assistance!
Zenpep is so expensive (1200) a month! Fortunately the prescription assistance worked! We had to send in a tax return and my gastro dr had to also sign the application.
It’s not free, but it is a huge help. No matter how much you plan for your retirement no one ever expects to pay 14,000 a year for medication! The prescription assistance has to be renewed on a yearly basis, but it’s worth it! There is a fifty dollar application fee, and I’m paying 59 a month through this program.
There was no way I could afford 1200 a month for zenpep.
This changed everything for me. It’s not a cure and the side effects aren’t fun, but this is improving my quality of life and extending my life since my nutrition is actually benefiting my body now.
I hope anyone that needs prescription assistance can take a look at it and see if it’s something that might benefit them.
Now, my goal is to gain muscle strength and move forward. Exercise has also helped tremendously with stress and also gets me outside.
Outside is therapeutic too, and I hope for all my fellow EPI crusaders to get outside and move your body!
All the best, granny Dee

REPLY
@upartist

Good morning Grannydee. My heart goes out to you. Your situation is difficult. 105 pounds is very low. My dad went through a similar process following an illness and surgery. There is a term called cachexia, and while it is labeled a syndrome, it occurs as a spectrum of severity of “wasting”. As a team, my siblings and I were able reverse his…. Gradually. My first question is “What can you eat?”. For my Dad, we placed small amounts of his favorite foods all around. He “nibbled” as tolerated, because his “taste buds” were altered. We did not push. No expectations for “nutrition” at this point. As the nausea decreased (this took weeks), he was able to broaden variety of the foods. He had more energy. The whole process took months. We were able to bring him home from the hospital and continued at home. The Cachexia process is hard to reverse, and becomes more challenging to do so the longer one is into it. There are little dietary pearls of ways to slip extra nutrition into traditionally non-nutritious foods. The tastes which appeal to you right are the most important thing to think about. You might want to consider looking at these strategies. I hope you can reverse this. I hope your pain declines.

Jump to this post

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

REPLY
@upartist

To Grannydee. Just a little pearl to start… try bone broth with soluble collagen protein powder , seasoned to taste. Well cooked Vegetables added as tolerated. Use white rice, on the side as tolerated. The high protein in these two sources (bone broth and collagen powder) is soluble, without taste, and more easily digested (already dissolved) when there is a lack of digestive enzymes. You have control over the taste profiles. Soup is versatile. I hope this helps.

Jump to this post

Thank you! I love making and eating homemade soup! I’m also drinking homemade ginger tea and it is helping. I haven’t had coffee or alcohol for 9 months now…and no regrets.
I try my best to consume 1200 calories a day, but it’s a challenge. Exercise definitively helps too!

REPLY

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! 🏃‍♀️🏃‍♀️🏃‍♀️

REPLY
@grannydee

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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I love it Granny Dee! You’ve got a good attitude, and your words will work to benefit your readers! I hope your year is filled with beautiful nutrients hidden or dissolved into the foods you can palette with minimal pain. Another quick pearl: I have seen vegetable powders that could potentially be mixed into the bone broth which could enhance its nutritional punch. Good luck and stay positive!!!

REPLY
@upartist

I love it Granny Dee! You’ve got a good attitude, and your words will work to benefit your readers! I hope your year is filled with beautiful nutrients hidden or dissolved into the foods you can palette with minimal pain. Another quick pearl: I have seen vegetable powders that could potentially be mixed into the bone broth which could enhance its nutritional punch. Good luck and stay positive!!!

Jump to this post

Thank you so much. I’ve not tried the veggie powders, I am interested’. Do you know a specific brand? I’ll look on Amazon too. Thanks again. Every day is a new adventure !
Tootles!

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@grannydee

Thank you so much. I’ve not tried the veggie powders, I am interested’. Do you know a specific brand? I’ll look on Amazon too. Thanks again. Every day is a new adventure !
Tootles!

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Hi Granny Dee. I am sorry, but I do not know specific brands of vegetable powders. I have just seen them in passing. Maybe natural food stores?

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@upartist

Hi Granny Dee. I am sorry, but I do not know specific brands of vegetable powders. I have just seen them in passing. Maybe natural food stores?

Jump to this post

You might be referring to a product called “balance of nature”?
I eat all the recommended fruits and vegetables for EPI.
I take the supplements recommended by my gastro doc. Thank you so much for your suggestion.

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