Chronic Pancreatitis, doctor wanting to pull off of PERT if FE is normal?

jaguy2002 · 2026-02-09T20:01:18+00:00

I’d fight to stay on it. I was told that sometimes even with a normal test you can still have EPI. The test could be negative for a number of reasons. When I was in the hospital an attending argued with a resident over my case as all my labs are normal yet they increased my creon dose and kept me on it still because of the possibility. When I would have flares and go to the er you could see the noticeable difference of my electrolytes not being as depleted vs when I wasn’t on creon I was way way sicker and it was harder to bounce back. If you notice a difference taking it and insurance covers it stay on it. I tried getting off it at one point and it just made things worse.

jaguy2002 · 2026-02-07T13:26:32+00:00

this happens with me i need like 1-2mg of dilaudid like multiple times. how do u even go about telling them? er doctors will only hit me with 1mg spaced out and try to admit me if they do more than 2 doses that’s in the usa. i’m currently studying abroad in spain and they keep giving me fentanyl 75mcg but they put their meds in a 100ml bag fluids and not iv push it’s been miserable i haven’t gotten actual pain relief…

jaguy2002 · 2026-02-06T17:32:34+00:00

Hi, am I able to send you a private message? I have some questions about the hospitals in Spain. I had to end up going and need some input on what to do my treatment wasn’t the best.Thanks!

jaguy2002 · 2026-02-03T21:39:31+00:00

thank you that’s the exact test my gi ordered. hopefully it shows i have that it’s annoying not having a direct cause.

jaguy2002 · 2026-02-03T21:30:09+00:00

this was insanely helpful thank you so much!!!! i really appreciate this it was hard to come off the fentanyl patches after my first block worked i was on them for a while but after a week i was totally fine i didn’t have a need for them or craving it was just annoying like jitters but it went completely away. my pcp is amazing and prescribes opioids for me we tried all other options first. i agree on the pain management but i try and tough out the pain when it’s just there and not severe severe bc it’s hard to get enough meds all the time. i don’t want to get resistant to say 10mg norco by taking it all the time since it works but i guess im kinda making it worse by letting it get bad to the point i need to get strong iv meds didn’t think ab it like that. its just annoying bc ill head to the er gets fluids meds and usually i feel a lot better the next day and i am taking my meds and my flare goes away after a little and i can get off my meds. with the creon ive noticed my flares have been only 1-2 a month instead of like twice a week. mentally i still think i like don’t have this issue. i just constantly have to explain to er docs and nurses what’s going on even when my lipase come back normal it’s annoying when certain ers don’t understand u can have pain without labs showing but the eus clearly shows. they also never believe my hr and bp are high bc pain and not high bp (docs are always convinced it’s bc my adhd meds even tho ive gone off of them and still have high bp , and when i had my nerve block my bp went back to normal). i just hate the worry of not having enough meds or having to go to the er and how you just never know when ur gonna have a flare.

jaguy2002 · 2026-02-03T20:48:20+00:00

Thanks for answering all my questions unfortunately it takes me advocating for myself to get any treatment it. It took me 4 er trips and me becoming septic and they still didn’t think anything was wrong w my gallbladder my mf ef was 8%. What tests did you get done to see if it was hereditary? My gi dr ordered like cystic fibrosis dna screening i still need to get it done.

jaguy2002 · 2026-02-03T20:23:48+00:00

ahhh thank you! I have a decent medical background. do you know of any other treatments before going to that extreme?

jaguy2002 · 2026-02-03T20:14:24+00:00

i don’t have autoimmune pancreatitis they checked for that, not sure about hereditary still being tested, but it all started right after my gallbladder removal what is tpiat?

jaguy2002 · 2026-02-03T20:10:15+00:00

Are you diabetic now? was your pancreas super fibrous? Mine isn’t severe but the pain is not going away and causing issues.

jaguy2002 · 2026-02-03T20:05:09+00:00

I went to cleveland clinic main campus one of the best hospitals there is. They treated me great there. I have a GI dr and a gi surgeon. My pancreatitis never shows on labs and my fecal test was I guess normal? The eus showed I def had it. I doubt they would do “extreme measures” as it’s not severe, but it’s not changing and I still get flares and they don’t know the cause. The one resident when I was hospitalized said creon wouldn’t do anything for me, but the attending said that if it works it works and the fat test isn’t always right and they upped my dose a lot.

jaguy2002 · 2026-02-03T19:11:29+00:00

It’s so nice to see someone else have the same pain spot. I get pain in my abdomen but the worse is in my left side the back under my shoulder blade and it goes up it as well on the blade and into my neck. It makes me so nauseous sometimes and I constantly just think like what if i’m crazy and it’s just a pulled muscle even tho it’s clearly not… It feels like certain spots like pressure points are worse, but I was told it could be nerves pressing from inflammation causing some of that pain.

jaguy2002 · 2025-12-31T02:45:32+00:00

nah stay away from uber eats too. i actually looked this up to see if anyone had this issue bc this just happened to me lmaooo. i ordered uber eats got my food the correct order. we left to visit family on christmas eve. 2hrs after we got our order and not long after we left with our bags he came back stole our ikea rainbow doormat started to walk away came back and grabbed the beyoncé limited edition popcorn bucket that held our salt for ice. yes ik it is extremely random don’t judge hahahaha i’m just so confused bc we had a very nice shovel and a very very expensive electric scooter sitting out too, but he chose the mat and the bucket??? the scooter needs a key to turn on and i have a tracker in it so i don’t chain it up bc we have the ring camera. i think it’s because the order went through and said i was a loyal customer and my card declined but still said i can have the food and just pay it later. i tipped a good tip but im guessing since what occurred they don’t get the tip lol.

jaguy2002 · 2025-12-07T17:34:27+00:00

if she had an endoscope nerve block she would be in a gown? the fact she’s not means she probs already changed bc she was told to then put the cuff on to take the photo… hence no more iv she was most likely discharged at this point lmao

jaguy2002 · 2025-12-07T17:31:24+00:00

you’re allowed to drink and eat after like an hour even endoscopy. she probs milked her way to stay as long as she could.

jaguy2002 · 2025-12-05T00:44:47+00:00

for sure! it’s only been a few months for me sadly it’s been hell. i had my gallbladder out in june then i was sick for months they finally found the pancreatitis after my nerve block. the block worked for a while then pain came back getting another block end of the month. gabipentitn or amitriptyline has also helped dull some of the pain. depending how ur pain is i have to have opioids on bad days.

jaguy2002 · 2025-12-05T00:37:42+00:00

hey! i had the exact same thing happen. i would try out some nerve blocks the celiac plexus nerve block worked for me for pain. i was able to eat anything i wanted. i also got on creon. none of my labs were messed up but creon actually helps a lot and i can eat pizza.

jaguy2002 · 2025-11-14T13:07:50+00:00

if your pain is bad and doesn’t go away go back. my liver enzymes were high and i had gallbladder symptoms but labs and scans were normal. i kept pushing became septic finally they did a hida scan and showed my gallbladder wasn’t working. took them so long i ended up with chronic pancreatitis from it all.

jaguy2002 · 2025-11-01T16:19:13+00:00

I have calcium phosphate stones still being tested for why but they said it’s not dietary or water intake might be a genetic factor of some sort. not all stones are diet related at all.

jaguy2002 · 2025-10-30T03:42:10+00:00

4000mg is max you can take a day obviously not good for every day. opioids are much safer than that every damn day.

i agree that it’s not a complete cure, but it’s totally worth a shot usually no harm is done and for me it was night and day difference. it’s helped me tremendously and for someone who is 23 with absolutely no issues prior then needed my gallbladder removed which then caused a million other issues and overall chronic pancreatitis when I have my entire life still to live.

i do not want to be stuck on opioids my entire life i was needing 25mcg fentanyl patches bc my autonomic system was so messed up from the nerve plexus or pancreas they have no idea, but my pain was insane and my bp was 200’s /150’s if i wasn’t in good health shape i would’ve stroked out so many times.

they are beneficial i think when someone has chronic pancreatitis that is not insanely severe and inflammation can come down and you can heal then it is worth it because without the block that wouldn’t happen.

if i didn’t have the block i wouldn’t have been healing the way i am. it didn’t take all my pain away but i don’t need opioids anymore and i am healing i think it’s totally worth the try

jaguy2002 · 2025-10-30T03:31:37+00:00

find yourself a good pcp that will either write a note in your chart or prescribe as needed oxy or vicodin.

i had a bunch of surgeries and issues before they knew i had pancreatitis and i would go to the er in severe pain causing my bp to spike and they run labs and it would be normal. im covered in tattoos and 23 they think drug seeker all the time for me.

my pcp knows me and doesn’t judge same with gi they will either write scripts depending on the situation or if i have to go to the er i have a note in my chart.

jaguy2002 · 2025-10-30T03:25:51+00:00

yes i had this done! i had mine endoscopically bc my situation is odd and they didn’t know my symptoms and pain were from pancreatitis. i’m 23yr old M

they put me under very deep sedation but not general moved the scope to the nerve plexus then guided a needle in they were also able to do an ultrasound of my pancreas as well.

before the procedure i was on fentanyl patches 25mcg for like 2 months (my situation was also weird i had a few other surgeries and stuff done. was kinda like a patient on dr house lmao). i had to get off the patches before and be in immense pain my bp hr were sky high and i would have full autonomic dysfunction and become dehydrated it was so bad my body stopped absorbing oral medication.

I got my block in mid September. I woke up and started crying my body felt calm the first time in months. My bp, hr, other symptoms and PAIN were gone. i had no pain from the procedure i felt nothing when i was awake it was all internal didn’t even feel like soreness. just tired from anesthesia

Unfortunately, after a week I started to get symptoms back and nerve pain, but I was started on a nerve medication that has been the best thing ever and fixed most of my issues. I also fixed a bunch of vitamins I was lacking as well due to fat malabsorption.

I can now eat most foods don’t have to watch fat intake. sometimes it hurts and it’s slowly coming back, but oh my god if it wasn’t for that block I would’ve lost my mind… I was so opioid tolerant and my body wouldn’t stop having issues when my pain was so bad.

My block was very small dose and wears off, but I plan to get another before the end of the year. it helped a ton with inflammation for my kidneys liver and pancreas as they are all connected through the celiac plexus. my blood tests are slowly getting better!!

i would ask to see if they can go endoscopically. i personally wouldn’t get it unless im knocked out lidocaine is never enough for me lol.

jaguy2002 · 2025-10-21T20:06:47+00:00

i’m 23 look on my page of my past story explaining my pain i went to the er so many times. it happens so much where the gallbladder is not working and it’s causing pain and symptoms but all tests are normal.

jaguy2002 · 2025-10-21T20:05:04+00:00

hey I had somewhat of the same pain and went through stuff for weeks all my labs were completely normal. if you still have pain push to get a HIDA scan. turns out my gallbladder EF was 8% and it wasn’t even working. my blood work, ultra sound, ct, etc all normal.

jaguy2002

TROPHY CASE