EPI abdominal cramping
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.
Interested in more discussions like this? Go to the Digestive Health Support Group.
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.
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
Thank you, Susan. Since I just received my diagnosis with EPI this past Tuesday, I'm still trying to wrap my head around living with it and how it's so life altering. But knowing now there are other people living with it, I hope to learn more about how to better manage the symptoms.
Yes, if you do have EPI, I hope you, Grannydee and I can join to fight this together!
Hugs, Linda
So happy for you advocating for yourself!
It’s an everyday process but that’s okay too!
We are doing the hard work to feel our best and
enjoy our lives🫶🏼🫶🏿🫶🏽
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.
drs22,
Thank you for your encouraging note. It's good to hear you're daughter is doing so much better. It gives me hope!
I had joined the group below on Facebook before joining this group. It's a private group that you have to join. I've found a lot of helpful information from it so far to help me learn about EPI and what diet/treatments work and don't work. But, of course, it's all dependent on each person, trial and error until you find what works for you.
Living With Exocrine Pancreatic Insufficiency (EPI) Support Group
I'm waiting for approval from myAbbVie Assist for Creon assistance, which is going to take some time yet. Since I'm going downhill fast with the weight loss/malabsorption, I saw on the Facebook group that people have tried two different pancreatic enzymes with success (Vital Nutrients Pancreatic Enzymes 1000mg and Pure Encapsulations Pancreatic Enzyme Formula) from Amazon. I ordered the Vital Nutrients on Saturday and started taking them yesterday. Last night was a little rough on my stomach, but today it seems better. I hope I get some relief soon and start absorbing nutrients and stop or slow the weight loss.
Thank you again for your kind words. All the best to you and your daughter.
Linda
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
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
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
Hope you are experiencing an easy transition!!!