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Gastroparesis and EPI related?
I was diagnosed with Exocrine Pancreatic Insufficiency a few months ago. Tried Creon, which seemed to help, but can’t afford refill. Still awaiting AbbVie’s decision on Creon Assistance. Because I am seldom hungry, my doctor ordered a gastric emptying test, which showed Gastroparesis. Do I just have bad luck, or are these two related? I also have Sjogren’s Syndrome, which I suspect might have caused these. Strangely, I never vomit, and only have nausea after a meal like steak. I was acutely ill with pain and nausea for four days after a steak and baked potato two weeks ago. Almost went to the ER because of the pain! But generally, my main symptoms are bloating and lack of appetite. I’ve lost over 80 lbs (which I needed to lose.) Any suggestions? I cannot take Reglan (causes extreme anxiety)
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Ohhh , did they tell you that it’s a flare up thing and could calm ? Sorry I’m just curious
I don’t know much about SIBO, just that I don’t have it. My other conditions definitely have flares and remissions. Can’t say what brings the remissions on, but occasionally I actually feel normal. Have learned to treasure every minute of that.
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1 ReactionI’m getting a shot in the neck tomorrow that helps with a number of stuff, even resetting the immune system, I’m praying it helps in some way with inflammation. Sallate Gallion Block . Has gastrointestinal benefits too . 🙏🙏
Sounds like I still have a great deal to learn. I’ve never heard of that procedure, but really hope it brings you some hope and relief!
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1 ReactionIt’s called Stellate Ganglion Block. I think your autocorrect messed up your typing.
I tried it too. It was a huge help aforesaid my ability to eat.
Joking with my husband, I said I should have waited to have the injection until I lost twenty more pounds.
Thank you , I hope it helps , I’m so tired of no appetite
Hi Susanh824,
I too have both Gastroparesis and EPI. I've searched online for someone like me with both conditions and you are the ONLY one I found! We have the bad luck of having to deal with 2 battles at the same time.
My main issue with EPI is the diarrhea after every protein supplement drink. Do you have this issue too? If I take Creon, wait 30 minutes, then drink the supplement, I will have less diarrhea, but still can't avoid it completely. If I don't wait after taking Creon, then the diarrhea is even worse. Very frustrating. If you see this post, I would appreciate your opinion, or anyone else's opinion who has the same issue.
Hi Yukisun,
So sorry that you are fighting the same battles. I think I may have it a bit easier than you do though. I take Creon as well, and it has really helped me up my food intake. I do have loose stools occasionally, but my biggest battle is with constipation and just lack of interest in food.
If you don’t mind my asking, how old are you, and how long have you had each condition? I’m 65, and symptoms began 4-5 years ago. I was diagnosed with EPI about a year ago, then gastroparesis 3-4 months later. No known cause, though I do have an autoimmune disorder and have had multiple abdominal surgeries in the past.
Wishing you healthier days ahead!
Susan
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1 ReactionHi Susanh824,
Thanks for reply. I am 68 and was diagnosed with both GP and EPI 2 - 3 years ago. These issues started out "mild", but gradually became worse. I had 46% of food remaining after a 4-hour gastric emptying test. I too have had multiple abdominal surgeries before; which I think may have caused my issues. My Doctor thinks the cause is "idiopathic", but I don't think so. It was 3 years after my Nissen Fundoplication surgery when I was diagnosed. Now my Doctor is talking about a new procedure for GP - Gpoem.
It seems like we have opposite symtoms. My diarrhea and your constipation. I don't know if you know about a prescription drug "Motegrity"? My Doctor prescribed it for my GP, but I am afraid to take it due to its' side effect of diarrhea. This drug is FDA approved for treating constipation in US, but Doctors in Europe prescribe it for GP according to my Doctor. Maybe you can ask your Doctor if Motegrity might work for you since you have both GP and constipation. I too lack interest in food. I live on Boost and Ensure even though they cause me to have diarrhea. I wonder if I am the only EPI patient who has this issue? Did you ever drink one of these protein drinks and have had diarrhea?
Best to you too,
Yukisun
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1 ReactionHi Yukisun,
I know of some patients who are doing well on Motegrity, and may consider it in the future. Have you tried Linzess? That evened things out for me when I took it, but unfortunately, my out-of-pocket costs are too high for me to continue taking it.
Do you have access to Facebook? There are support groups for both conditions, and occasionally I will run across someone else who also has both. Wish I could remember their names.
My GI doctor recently advised me to increase my fiber intake. So I’m going to see if that helps. I do drink Boost and Fairlife Protein Drinks, and do think they may cause loose stools. Just ordered a high quality blender to see if my body is able to tolerate smoothies. I’ve got to get some protein and vitamins in somehow.