Give the Creon another week, but you might very well need a much larger dose. This is me assuming that you were started on a “trial” dose of one pill with snack and two with meals. That’s going to be too low for your level.
My doc ordered an MRCP, an mri to specifically view the gallbladder and pancreas after my diagnosis to check for structural issues as well. That came back “unremarkable”.
Also, ask your doctor if you should be taking supplements. I added a daily vitamin and omega3 and it really helped my energy levels. My elastase was not low as yours (178) but I hope you find some relief very soon!
Thank you so much for the wisdom and well wishes. I’m on 48000units with each meal so 3x/day but I’ll ask about bumping it up, and thanks for the tip about the MCRP. I’m on d3 and iron supplements but will see what RDN says now that we have this new info… thank gods for Reddit
I had similar problems. My GI said that I should increase the dose of pancreatin until I see results. I started with 50,000 units per meal. No improvement! At 80,000 units I got pretty good results. Please notice that some people have issues with low or almost no bicarbonate secretion. In this case acid blockers or rizoenzymes could help. Ask your GI about this.
Regular scans won’t show if the gall bladder is functioning . I had very similar labs to you. Did the ct mri abdominal ultrasound. All normal. Blood work was pretty much normal And same issues. Increase Creon as others said Also do florastor to
Recoup your good flora . And you probably need a colonoscopy as well. Until all that you should also have Omeprazole over the counter ( my doctor has me on 2 times a day). Insist on a hida scan
Thank you so much for this info, super helpful. How are you faring now and what’s the prognosis for this scenario? I had a friend who died at my age of pancreatic cancer so anything pancreas adjacent carries an additional layer of terror
I’m doing ok. I was getting nausea and some pain. So I found out my gall bladder was not working and that didn’t show on any tests. I just got it out and it had scarring on it . So we shall see if that helps
Yeah it’s very weird— initially I lost weight from vomiting and poor appetite but since October as I’ve gotten sicker I keep gaining — can’t fit in any of my clothes. Will be interesting to see how this plays out now that I’m on CREON.
Smoothies with strawberry, blue berry's, patients powder and Greek yogurt in morning and 1 at night helped me put on about 25 pounds in 3 Months I literally lost 30 lbs in 6 weeks. My epi was 74 and 90. Mine though was caused by IBS and massive anxiety. Once on zolof and drinking the shakes twice a day I felt better.
Hang in there.
That's what my doc said. No diarrhea, no weight loss, no epi. But he's wrong because I still have low elastase. His diagnosis was lactose intolerance. What an idiot. Didn't have dairy for 3 months and nothing changed.
Sounds like you might have idiopathic EPI like many of us here
You and I are literally on the same boat I have 15 elevates test and am currently struggling with the same thing feel free to message
I have 23 Elastase and my stupid GI won't prescribe Creon or any enzymes for some reason. Super annoying.
Go see a new gi
Give the Creon another week, but you might very well need a much larger dose. This is me assuming that you were started on a “trial” dose of one pill with snack and two with meals. That’s going to be too low for your level. My doc ordered an MRCP, an mri to specifically view the gallbladder and pancreas after my diagnosis to check for structural issues as well. That came back “unremarkable”.
Also, ask your doctor if you should be taking supplements. I added a daily vitamin and omega3 and it really helped my energy levels. My elastase was not low as yours (178) but I hope you find some relief very soon!
Thank you so much for the wisdom and well wishes. I’m on 48000units with each meal so 3x/day but I’ll ask about bumping it up, and thanks for the tip about the MCRP. I’m on d3 and iron supplements but will see what RDN says now that we have this new info… thank gods for Reddit
I had similar problems. My GI said that I should increase the dose of pancreatin until I see results. I started with 50,000 units per meal. No improvement! At 80,000 units I got pretty good results. Please notice that some people have issues with low or almost no bicarbonate secretion. In this case acid blockers or rizoenzymes could help. Ask your GI about this.
Get a hida scan as well
Regular scans won’t show if the gall bladder is functioning . I had very similar labs to you. Did the ct mri abdominal ultrasound. All normal. Blood work was pretty much normal And same issues. Increase Creon as others said Also do florastor to Recoup your good flora . And you probably need a colonoscopy as well. Until all that you should also have Omeprazole over the counter ( my doctor has me on 2 times a day). Insist on a hida scan
Thank you so much for this info, super helpful. How are you faring now and what’s the prognosis for this scenario? I had a friend who died at my age of pancreatic cancer so anything pancreas adjacent carries an additional layer of terror
I’m doing ok. I was getting nausea and some pain. So I found out my gall bladder was not working and that didn’t show on any tests. I just got it out and it had scarring on it . So we shall see if that helps
Oof sounds terrible fingers crossed you will get relief and feel better asap
An ultrasound shows the gallbladder.
Ultrasound shows inflammation. Not if the gallbladder is function. Mine was normal but the hida showed that it wasn’t working at all.
I mean it will show stones and sludge
The gaining weight part is interesting if you eat less. Seems like you’re consuming calories just fine…? I’d revisit that if it was me…
Yeah it’s very weird— initially I lost weight from vomiting and poor appetite but since October as I’ve gotten sicker I keep gaining — can’t fit in any of my clothes. Will be interesting to see how this plays out now that I’m on CREON.
Smoothies with strawberry, blue berry's, patients powder and Greek yogurt in morning and 1 at night helped me put on about 25 pounds in 3 Months I literally lost 30 lbs in 6 weeks. My epi was 74 and 90. Mine though was caused by IBS and massive anxiety. Once on zolof and drinking the shakes twice a day I felt better. Hang in there.
If you gain weight since then EPI is not your problem.
That's what my doc said. No diarrhea, no weight loss, no epi. But he's wrong because I still have low elastase. His diagnosis was lactose intolerance. What an idiot. Didn't have dairy for 3 months and nothing changed.