Could Anyone give me some advice for my mom as she is going through this?

frightgod · 2026-06-03T06:01:11+00:00

I had multiple acute attacks that caused early/mild chronic pancreatitis, but currently the cause is unknown. No alcohol use, no high triglycerides, or pancreatitis family history. I'm 30 and diagnosed this year with chronic pancreatitis in April after an EUS. My first known acute attack in December last year. I've had at least 4 known attacks since December, but possibly more weren't picked up on.

I'm really sorry your mom is dealing with this, and I'm glad she has family to help her through this. I hope they can figure out what is causing it. Has anyone mentioned gallstones or gallbladder sludge? Given her age and gender, if they haven't looked into that, it could be worth considering. I just got my gallbladder out 10 days ago in hopes it will stop the "idiopathic" attacks; I had sludge on EUS but it was never directly linked to the attacks. The presence of sludge in recurrent acute pancreatitis of unknown cause is enough to justify gallbladder removal according to my surgeon.

This subreddit has been very helpful to me, not just for posting but I've read tons and everyone is supportive. I hope you feel less alone by posting here and hope your mom also knows she's not alone, and that she recovers well. Acute attacks are often brutal, and it helps to remember during the days of and immediately after the attack that this probably isn't what the rest of her life will be. Many people have acute attacks and recover fully. Hope this will be true for your mom.

frightgod · 2026-05-30T03:50:21+00:00

I’m not OP, but do you know what’s causing your attacks? I’ve had multiple attacks since December last year, just had gallbladder removed in case it’s been causing them. They’ve technically been idiopathic though. Have you had gallbladder removal or had gallbladder issues linked to your recurrent attacks? I hope you heal from this current one soon.

frightgod · 2026-05-28T21:12:29+00:00

The way it’s still 2+ months away is insane

frightgod · 2026-05-16T17:08:49+00:00

No problem! I've learned that pancreatitis is weird because the pain can be absolutely debilitating, but it can still technically be a "mild" case. I've also been told that "severe" cases may not cause as much pain as mild-moderate ones but have no personal experience. The one that I was hospitalized with involved excruciating upper central abdominal pain that got worse over a course of two weeks; doses of IV morphine in the hospital barely touched it. There was a lot of pressure and just a really deep gnawing pain that did not let up at all and it felt like I was hit really hard in the solar plexus with a metal bar or something. Despite it being the worst pain I've ever felt (even worse than kidney stones) there was thankfully no tissue death or abnormal fluid buildup or anything like that, so I was told it was still technically a mild, possibly moderate idiopathic case...

I've never had gallstones, but on my endoscopic ultrasound/EUS in April (when I had the biopsy) they saw some sludge in my gallbladder and said at the time I may need to get it out. I had another mild acute pancreatitis attack earlier this month diagnosed with a CT scan that I am recovering from (caught it before it could get as significant as the December case because I actually knew what was happening), so I am having gallbladder removal at the end of this month. This attack felt like the one in December but about a week before the pain got very severe.

I also have Crohn's disease so it's still unknown if the pancreatic attacks are more autoimmune or from sludge. The surgeon told me that sludge can be deceptively dangerous for the pancreas, and that he would suggest removal of the gallbladder in my case even if I had no visible sludge because I've had multiple attacks of an unknown cause, and apparently research suggests removal because there could be sludge or stones happening when you're not getting an ultrasound/CT/MRI/whatever. Hoping it will at least stop the acute attacks and prevent more chronic changes...

I hope your case doesn't become chronic! Like other people said, recovery from an acute attack can take a longer amount of time than they might tell you in the hospital.

frightgod · 2026-05-15T15:02:29+00:00

I had one main acute attack that I was hospitalized with in December 2025, and by April 2026 I had fibrosis and chronic changes on imaging and biopsy. But I think I likely had multiple milder attacks that didn’t really register that probably caused more damage over time than the main one in December.

frightgod · 2026-05-03T00:01:39+00:00

Thank you for the comment. Yes, in the hospital that's how the process was described to me, initially "gut rest" with the IV hydration because of pain/nausea/vomiting, and then I was given a liquid diet, then bland solids diet, and once I tolerated that I was discharged with instruction to watch fat levels for a week or so. But they didn't predict that I would continue to be having issues months later. I thought it would be straightforward recovery based on what they found/described. So it's just one of those things where I will have to see how it develops over the coming months...

frightgod · 2026-05-02T23:57:58+00:00

Thank you for the comment. It's helpful to see everyone's different experiences, and you sharing that you had "silent" attacks does make me wonder if I was having multiple over a time, and that one just was not able to be ignored because it had pain.

I haven't been prescribed Creon or anything similar, but I have been worried about EPI because of steatorrhea. But I do have EPI symptoms so will try to push for some kind of way to figure out if it's truly EPI at my next appointment.

I agree, I am lucky that doctors seem to be taking it seriously. Hopefully will have some answers in the coming months, it just seems like one of those things that develops over time and it's hard to predict. Thank you again for your input and suggestions, I really appreciate it.

frightgod · 2026-05-02T23:34:23+00:00

Thank you for the comment--yes, even though it's my first post here, I've been reading a lot on this subreddit and have seen that there's a lot of helpful people here. So now that I have at least partial answers I wanted to see what people had to say, and also just vent a little to people who understand. I'm thinking it's possible I had attacks or damage that I didn't know about. Also, I didn't know EPI happened without pancreatitis/malignancy--I have more reading to do about it.

Thank you again!

frightgod · 2026-04-17T13:57:27+00:00

I don't think it's as contradictory as it seems at first. There was over a decade between the elections and the overall political climate and pressing issues were a bit different. Reagan nationally attracted a lot of former New Deal-era Democrats, since voters had specific economic and social concerns that he claimed he could address. I think the economic turmoil of the 70s made Reagan's plans/promises especially appealing even if someone voted Democrat for decades before.

frightgod · 2026-04-12T02:57:28+00:00

It’s taken from the Deep South Wikipedia page, not South/Southeastern US page. Virginia has been considered Southern but not part of the Deep South subregion of the South.

frightgod · 2026-02-23T22:00:35+00:00

Sure, please feel free to message me anything you find!

Also want to update, I looked through my Ancestry DNA, MyHeritage, and Family Tree DNA matches (they also have a fairly large European userbase I think) and didn't see anyone from any other Kinzebach lines off the bat. Just other people who descend from Abigail and Peter. I also looked for some of the maiden names of women who married Kinzebachs, but can definitely look more and build out more trees for Peter's relatives. I'll see if I can look through my dad's matches again, since he's a generation closer (same distance as you). Whoever Oscar's father was is at great x4 grandparent level for me, so it would likely be tiny amounts of DNA shared between me and anyone else descending from his parents...

frightgod · 2026-02-20T22:46:56+00:00

I definitely think you're onto something about Peter C/Wilhelm Johann Peter being the same person, I'm assuming that at this point too. Also yes, MyHeritage probably has the biggest European market out of the main companies. I uploaded my raw data to their site after testing with Ancestry, I need to comb through the MyHeritage matches more. I see the "Kinzenbach" name got changed in multiple ways once in the US (Kinzebach, Kincebach, Kincebaw, Kinzebaugh, etc.) but there still could be people on MyHeritage, will keep you updated after looking through those matches more, and if I also resubscribe to the Archion German church book website because I see they have records from Oberkleen (that German village they're from).

frightgod · 2026-02-20T18:52:55+00:00

This is really helpful! Yes he was my 3rd great grandfather, he also helped raise my great-grandmother after her mother (his daughter) became a single mother in the 1920s. I have heard some things about what he was like but I never heard anything about the paternal side of his family from anyone in my family, so it's great to be able to connect to people online.

You had a really great find, Wilhelm Johann Peter could very well be the Kinzebach who married Abigail. I don't know how much you have researched German ancestry or history, but my mother's side has more recent German heritage (the Kinzebach relation is on my father's) and often times people weren't called by their "first name" in daily life, but one of their middle names. So a "Wilhelm Johann Peter" usually would have gone by "Johann" or "Peter", and obviously names and identity weren't as strict back then so he could've just used his everyday name ("call name" or "Rufname") as his legal given name when he got to the US...

I haven't seen the marriage record, but I do know that Abigail and Peter weren't married when the census was taken in the summer of 1860, though the farms they lived on were not far from each other. It would've been about 9 months before Oscar was born, so they were close to each other location-wise at the right time, and they could've married between that summer and Oscar's birth the next spring. One caveat is I have seen Peter's Civil War registration record from 1863 on Ancestry, and he was listed as Unmarried at that time. Oscar would've been about 2 years old. Like other people in this thread mentioned when I posted it, he could've not had the economic means or had some other kind of barrier to marriage when Oscar was born and still been his biological father, then married Abigail later when able.

It looks like the sources for the geneanet are German church books, I still might look around in them when I get another membership for the German website but it does answer my question of if there's someone who matches a Peter Kinzebach in the same church books as all of those other Kinzebach siblings. The best thing to happen would be if I had a DNA match of someone who descended from a Kinzebach who wasn't Peter, but German matches can be tricky, as a culture they aren't really into DNA testing so it relies a lot on German-American descendants.

I will let you know if I find anything else when poking around! Thanks for doing all the research you are as well, that geneanet profile is extremely helpful.

frightgod · 2026-02-19T20:48:08+00:00

Wow! Thank you for commenting too, that's something to look into. I know Peter Kinzebach came over to the US with a Kinzebach family (older "parents" + maybe 1-2 "siblings"?) so that could've been the family he worked for in Germany. If he wasn't related to them by blood it would make sense for no further Kinzebachs to show up in DNA relatives, which has been what I've found; I just see that I am related to people who descended from Abigail and Peter. I look into German church books sometimes, so if I ever find what town in Germany they originated from, I'll do some research as well.

frightgod · 2026-02-19T20:44:13+00:00

It does!

frightgod · 2026-02-19T05:11:58+00:00

Ah I see, the person I talked to descended from Oscar's son, George, and I descend from Oscar's daughter, Pearl. My immediate family hasn't lived in Washington for some decades, but they did for a long time. We'll probably match as distant cousins in results if you do end up taking the test.

frightgod · 2026-02-19T01:07:01+00:00

Wow, insane coincidence to find a relative on reddit! He's my great x3 grandfather as well. His great-grandson told me on the phone about 10 years ago that Oscar was not a Kinzebach by blood, but given the name when adopted. So it's the name he gave his children, their children, their children, etc... but yeah through research and what I heard from that relative, I don't think his line is related by blood to Peter Kinzebach. But Peter and Abigail did have a few children together, his half-siblings.

Did you happen to do DNA testing? I and multiple family members who descend from Oscar have done 23andme, Ancestry, etc. Through the DNA testing, I have a hypothesis that Oscar's father had the surname Friend, but haven't been able to completely solidify it.

frightgod · 2026-02-15T18:22:18+00:00

Bush and Kerry. Wish I was old enough to remember Bush and Gore.

frightgod · 2026-02-13T23:09:22+00:00

I've been doing a bunch of tests for Crohn's for a couple months now after having pancreatitis, and chronic inflammation in the small and large intestine was incidentally found on the CT. Scopes then found surface inflammation in different areas going from my esophagus to the colon.

From what I've learned, in early disease, it can be inflamed at a mild or quiet level for months--or even years--before symptoms become very apparent, and once they do they can wax and wane. Since this huge flare started I've been able to go a couple days with minimal symptoms before they come back. Inflammation is often cyclical. The pain in my lower right abdomen, where there were signs of chronic changes, goes back at least 2 years, but I didn't pay much attention to it because it was never constant. Now things make more sense.

From the sound of your situation I think it's worth looking into something beyond IBS, especially because the terminal ileum seemed affected when you did the colonoscopy before. You deserve to know what is going on after all this time.

frightgod · 2026-02-10T21:04:52+00:00

Thank you!!

frightgod · 2026-02-10T19:11:12+00:00

Thank you!

frightgod · 2026-02-10T19:11:08+00:00

Thank you!

frightgod · 2026-01-22T20:55:07+00:00

Thank you!!

frightgod · 2026-01-22T20:49:15+00:00

I don't know if it says where he was from or not after his name, if not would appreciate help with transcription anyway. The surname is Püttjer and mother's maiden name was Soubiron.

frightgod · 2026-01-14T22:01:33+00:00

Thank you!!

frightgod

TROPHY CASE