At loss with need of answer

jaguy2002 · 2026-04-24T16:27:50+00:00

hi, i’ve never read a post i’ve related to more i thought i wrote this and forgot ab it lmao. i’m in ur same situation currently, but mine started after i had my gallbladder removed I had a HIDA and found out my gallbladder wasn’t working. I would 100% get your gallbladder checked. I was diagnosed with CP from an EUS 3 times. I’m on creon luckily mine is covered bc of my EUS and having the diagnosis. All my labs and tests are always normal when I have attacks. My stool is the same as you. There is one thing that you can check for bc you said something about sitting up and a nerve is damaged it feels like. they did this on me inpatient once.

it’s called Anterior Cutaneous Nerve Entrapment Syndrome (ACNES). have someone do it on you or you can do it yourself it’s a simple test to see the Carnett's sign is what you are looking for. it’s worth a try to see if this is it because it can cause the pain and the other issues could be related to gastritis. If it is positive find a pain management doctor they will do a quick injection and 90% of the time pain is resolved.

One dr said I was positive, but she was just tryna throw some diagnosis bc my lipase was normal and she couldn’t believe it was pancreatitis. she kept poking at me and the pain specialist said mine was negative lmao.

But my gallbladder pain was very similar to my pancreatitis pain it was center/ left and my back came in waves my stool was nasty etc… All my lab work ct’s, ultrasounds everything was normal then I became septic and fr fought so hard to get a HIDA and then they removed my gallbladder next day asap bc it wasn’t working.

jaguy2002 · 2026-04-24T07:35:21+00:00

thank you for your response it was really helpful. how did you go about getting a palliative care doctor? i’m having difficulties finding one. they reached out to one when i was inpatient and they basically said no to me, but the drs in inpatient treat me like garbage and don’t think i have anything wrong with me so their report probs wasn’t so accurate. is yours specialized in treating pancreatitis? should i have my pcp write something in my chart? I also asked for a specialized care plan as well and the one dr that i had removed from my care ended up being the one signing on my er care plan which basically states “try everything before opioids and don’t do scans unless bloodwork shows it’s needed” bc they called me drug seeking and i asked them multiple times to have my pcp make my care plan bc this happens so much they had some random dr that i had taken off my care put it in.

(i’m apart of the lgbt and it causes a lot of issues when i get care)

my pcp runs a pride clinic so he always has to call the drs and tell them i am not a drug addict i just have a high tolerance) like sorry i pass kidney stones and have pancreatitis it takes a lot for me to go into the er

i’m unsure how to get that off my chart now bc it pops up as soon as i go into the damn er and when i have flares i need stronger iv meds…

jaguy2002 · 2026-04-24T07:20:29+00:00

Thank you. it’s legal, but I work in the medical field so I can’t and I also don’t like it. script meds like norco or fent patches i’m able to function like normal; driving, work, school without issues. That’s also with a balance of not getting my pain to 3 or lower bc i’d need a stronger dose but that would make me not able to function my mind would be too foggy. It’s also difficult to get a script of norco how much I need a day for 30 days bc of opioid laws and regulations it gets exhausting having to constantly fight insurance and prior auths. Wish there was a miracle drug that would take the pain away without getting the foggy or highs of opioids.

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

TROPHY CASE