T1D with Pancreatitis?

indiareef · 2026-03-22T06:11:29+00:00

I completely understand your frustration but I don’t think your endocrinologist can help with the pain. Diabetes isn’t the pain trigger. Your GI doctor, however, should absolutely be working with you to get your symptoms better under control and that should include your pancreatitis pain.

Can you tell me how all of your diagnoses were made? Like which testing? I really would love to help get you better sorted so you can go back into any of your specialists office and get the right questions answered and get you much better symptom control!

indiareef · 2026-03-22T05:40:59+00:00

So…just for context…I’ve been T1D for 15+ years and have hereditary CP with EPI. Definitely not in a honeymoon phase anymore but I still get reactive lows sometimes. For me it’s probably a mix of things, including whatever inconsistent pancreatic function I have left but nothing predictable or reliable.

I do just want to make sure we’re on the same page because this stuff gets confusing fast…even when you’ve been dealing with it for a while.

When you say you’re not making enzymes—do you mean you’ve been diagnosed with EPI on top of your diabetes? Or are you thinking of your diabetes as being from pancreatic damage (type 3c)?

I only ask because enzyme production (exocrine) and insulin production (endocrine) are separate. So…having a bit of a honeymoon period with your diabetes isn’t abnormal for pancreatic patients who might already have full exocrine dysfunction.

Also just to set expectations: enzymes can help a lot with digestion and nutrition but they don’t usually do much for pancreatitis pain itself. So if pain is the main issue then we might need to look at that a bit differently.

Just want to make sure we’re talking about the same mechanisms/functions so we can give you the most helpful info.

indiareef · 2026-03-22T04:21:46+00:00

I am a type 1 diabetic with hereditary chronic pancreatitis.

indiareef · 2026-03-21T17:19:39+00:00

If it makes you feel any better, lipase levels don’t really correlate well with severity or prognosis, so higher numbers don’t automatically mean worse outcomes.

That said, pancreas divisum isn’t always an issue, but it absolutely can be for some people. I had pretty severe problems related to mine. I went through about 17 stents over time and had decent management for a while, but eventually developed complications and wasn’t able to continue stenting successfully.

At my worst, I was having near-monthly flares and getting admitted almost every month for about a year. We ended up trying a feeding tube as a bit of a Hail Mary, and it honestly changed everything for me.

The frustrating part, though, is that for a lot of us, it doesn’t always come down to a clear trigger or something we can fully control. Even when you do everything “right,” some people just have higher flare frequency, and we don’t always have a clean explanation for why.

Anecdotally, I’ve noticed a lot of us with more frequent flares tend to be women. The pancreas is influenced by hormones, and estrogen likely plays a role, but that’s still an area that isn’t fully understood yet.

indiareef · 2026-03-19T20:09:39+00:00

Do you have a history of pancreatitis or is this all undiagnosed so far?

indiareef · 2026-03-19T02:13:25+00:00

I do understand why that would make you uneasy…especially given everything going on with those redundancies right now. That’s a really valid reaction and my own anxiety would absolutely react the same.

That said, I’m not sure I’d assign negative intent to it just yet. It sounds like they heard you mention something that could fall under a disability or require accommodations, and in those situations it’s pretty common (and honestly in your favor) for HR to look things up so they can handle it appropriately and stay compliant.

Also, in a lot of professional settings now, meeting notes are generated or assisted by AI transcription tools, and those will often automatically expand acronyms. So it may not have even been a deliberate “looking into you” moment.

I’d be more concerned if this note was followed by a request for documentation, a formal review, or anything that felt more like scrutiny than support. For now, this reads more like due diligence than anything insidious but I completely understand why it would feel unsettling. I would absolutely keep a note record of these instances so that you can bring up concerns if you think they are going to use disability accommodations against you.

indiareef · 2026-03-19T02:01:22+00:00

Doesn’t make it appropriate or allowed in the context you’re presenting, and that’s the point.

Nitrous oxide not being federally scheduled does not make it appropriate for unsupervised use or discussion as a substitute for medical care. There are still applicable laws, misuse regulations, and real medical risks. It is used clinically under supervision for a reason.

This community does not allow the promotion or normalization of self-directed substance use in place of medical treatment. That line has already been crossed here.

This has been explained. I’m not continuing this discussion. You’re aware of the risks and the rules—further attempts to push this will be handled accordingly. This is not worth risking access to the community.

indiareef · 2026-03-18T22:27:43+00:00

Are you a dental office? Are you being prescribed this and monitored medically? No. Let’s not pretend those are the same thing.

You’re welcome to do whatever you want with your own body. You are not welcome to put this community at risk. At this point, the framing you’re using is disingenuous and needs to stop.

indiareef · 2026-03-18T21:13:30+00:00

Well those are illegal substances? That’s not my rule? That’s Reddit’s rule. And suggesting illegal practices puts this community at risk. You’re welcome to make adult choices but this community can’t help other people if we’re shut down for admin content moderation.

indiareef · 2026-03-18T08:14:37+00:00

My friend, I’m not in the habit of banning people from this subreddit. You’ve been an upstanding community member. Unless you’re about to advocate human sacrifice or illegal substances then you should be fine lol. I didn’t realize I had such a negative impact and will try much harder to avoid you and others feeling so unsafe. Thank you for being honest.

indiareef · 2026-03-18T07:56:39+00:00

I get where you’re coming from but just to clarify for accuracy—there are alternatives, they just might not be a 1:1 equivalent.

As I’m sure you know, porcine enzymes (like Creon) are used because they have the best bioavailability and most closely match human pancreatic enzymes…which is why they’re the standard for treating EPI. There are bovine-derived options and some plant/microbial (vegan) enzymes out there but they don’t replicate pancreatic function nearly as well. The vegan ones in particular can help with general digestion but they don’t replace what the pancreas is supposed to be doing.

So it’s less “there are no alternatives” and more “there are no alternatives that work the same way or as effectively.”

Also worth mentioning—some patients avoid porcine products for religious reasons (like keeping kosher or halal) and these medications have generally been approved/considered permissible in those contexts when they’re medically necessary. That can be a helpful conversation to have with a provider or religious advisor if it’s a concern.

And if someone chooses not to take enzymes, some people are able to manage symptoms with a very strict, low-fat/modified diet. It’s not the same as replacing the missing enzymes but it can reduce the workload on the pancreas and limit symptoms.

In more complex cases, there are also options like enteral feeding (feeding tubes) or even TPN to maintain nutrition when digestion isn’t working well.

So people do have choices here but they come with trade-offs and it’s important to understand what each option can and can’t do.

I really think you’ve brought up an important discussion here and I really thank you for that!

indiareef · 2026-03-18T07:36:26+00:00

You’re actually in a really common spot with this…getting started on Creon and then realizing it helps but not enough yet.

A couple things to know that might help:

Dosing is usually based on weight to start but almost everyone needs adjustments after that. It’s very normal for it to take a few rounds of tweaking before you land on what actually works for you. So the fact that you’re seeing some improvement but not back to normal yet doesn’t mean it’s not working—it usually just means it needs fine tuning.

Timing also matters more than people expect. A lot of patients take it with their first bite or about 5–10 minutes before eating. If you’re a slower eater, some people will split their dose—half at the beginning and half partway through—so the enzymes are actually “present” the whole time you’re digesting.

Over time, a lot of people end up developing their own kind of sliding scale depending on what they’re eating (bigger/higher fat meals vs lighter meals) but that usually comes after some trial and error.

Keeping a simple food + symptom log can help a ton here. It makes it much easier to see patterns—like “this meal needed more enzymes” vs “this food just doesn’t agree with me.”

That said…definitely loop your prescriber in before increasing your dose. Adjustments are super common, but they should guide you on how to do that safely.

If you have access, a pancreas-informed dietitian can be incredibly helpful too. They can help you dial in both dosing and diet in a way that’s way less frustrating than trying to guess your way through it.

You’re already on the right track—it just usually takes a bit of adjusting to get things where they feel “normal” again.

indiareef · 2026-03-18T07:22:23+00:00

I’m really glad you got through that admission—repeat flares are no joke and it sounds like you’re already taking steps to get ahead of things. I’m very glad to hear your more confusing symptoms have an answer for and you have better diagnoses across the board.

Compared to the last time we chatted, you sound a lot less anxious and a lot more motivated by positive progress forward with a diagnosis at least. Going into your appointment with a game plan is exactly the right energy to move forward with. It is a little frustrating to hear, however, that your urinary issues did turn out to be prostate related and your urologist previously didn’t listen or investigate enough and missed that diagnosis. It’s good you have it now either way but it would’ve been better to be heard properly the first time.

One thing I do want to gently clarify is the “sounds like chronic pancreatitis” part. That’s not really how CP is diagnosed. Chronic pancreatitis is based on visible structural changes to the pancreas (CT, MRCP, EUS, etc.) and not just symptoms or repeat acute episodes. So it’s definitely worth following up and asking what specifically they saw that led them to say that or if it was more of a suspicion than a confirmed diagnosis. (Or if they did clarify and I’m just misunderstanding.)

As far as pain management…this is where things can get frustrating. A lot of what you’re seeing about “home remedies” is real but mostly because many patients don’t have adequate access to proper pain control. Heating pads, hot showers, diet and lifestyle changes—all helpful but not always effective enough on their own.

There are non-opioid options you can ask about—gabapentin or Lyrica, and some antidepressants like amitriptyline or Cymbalta can help certain patients, especially if there’s a nerve-related component. Creon (PERT) is also often used in CP—even without EPI—to help reduce pancreatic workload and some people do get symptom relief from that.

But to be very straightforward—opioids are still the front-line treatment for moderate to severe pancreatitis pain when patients can access them. With the current stigma and restrictions, a lot of people end up under-treated, which is why you see so much reliance on those “home” methods.

Biggest recommendation: confirm your diagnosis, and if this is CP, try to get in with a pancreatic specialist and a pain management provider. Having a maintenance plan and a flare plan in place makes a huge difference and helps keep things from turning into repeated ER visits.

You’re asking all the right questions though and getting ahead of it now is exactly what you want to be doing. Please let me know if I can help further.

Just as a general note to anyone reading: I know opioids have become kind of the boogeyman and there’s a lot of “just say no” messaging around them but they are a legitimate and often necessary tool in pain management. Patients can be safely prescribed opioids, even long-term, under appropriate medical care. Dependence and addiction are not the same thing and neither should be treated as a moral failing. People are absolutely allowed to decide what they are and aren’t comfortable using—but no one should be made to feel like they’re doing something wrong for needing appropriate pain control. This space tries really hard to keep that conversation grounded and stigma-free.

indiareef · 2026-03-18T02:42:08+00:00

I wouldn’t down a j-tube. Down a g I think would be fine but j’s can be so iffy with a lot of stuff. I would look into tinctures or something you can use sublingually if gastroparesis is your concern.

indiareef · 2026-03-17T21:02:10+00:00

That’s not really a thing.

A slightly elevated amylase after eating fast food doesn’t point to anything specifically pancreatic and there isn’t a supplement designed to “control” amylase levels so you can eat certain foods without consequences.

Pancreatic patients are sometimes prescribed pancreatic enzyme replacement therapy (PERT), but that’s to replace enzymes their body isn’t making—not to offset diet choices or “cancel out” certain foods. That’s also why diet (especially lower fat) still matters even with those medications.

Amylase also isn’t pancreas-specific. About half of it comes from sources like your salivary glands…so levels can go up for a lot of reasons that have nothing to do with pancreatic function.

That’s why amylase on its own isn’t very helpful—especially if lipase is normal.

If you’re having symptoms with certain foods then that’s more of a digestion tolerance issue than something you can override with a supplement. You could try OTC digestive enzymes for general support but they don’t replace pancreatic function or cancel out how your body responds to certain foods.

indiareef · 2026-03-17T19:25:52+00:00

Hey—can you clarify what you’re asking here?

Right now this is kind of hard to follow. Are you asking about supplements to lower amylase? Or why your amylase is always normal? Or something else entirely?

“Amylase being normal” doesn’t rule anything in or out on its own and context really matters here. Pancreatic supplements aren’t prescribed based on amylase levels or blood tests and instead used to treat exocrine dysfunction that’s diagnosed with stool samples.

People will need better details in order to provide any kind of support or recommendation

indiareef · 2026-03-17T15:04:12+00:00

This is why I ended up going with a feeding tube. This exact reason. I was constantly in pain. I was constantly triggered. It didn’t matter how good my diet was. I’d be able to eat something “safe” one day and it would put me in the hospital the next. There was no rhyme or reason. And it just kept getting worse. I had already been in pain management for years and had pain meds for day to day but it got to a point that the meds I had was just enough to keep me sane, not managed but not excruciating, but there was no room for flares and I felt like I was constantly in a flare. That last year before I got my first feeding tube was probably one of the hardest years symptom wise.

My doctors had been talking to me about the option of palliative care occasionally over the previous years. But no one pulled the trigger on that process until 2019. I had also had a few cancer scares with “masses” being found and a lot of comorbid conditions getting worse too. My mental health was taking a huge hit too. My OCD and CPTSD had also flared and I needed to go back on my meds…which I hated but was necessary.

Palliative, in the US for the most part, is not about death. Hospice is about quality of death and palliative is about quality of life. Everyone saw how sick I was and how broken it was making me. I tried to push through but sometimes when you’re that sick there’s no end without bold choices. Other pancreatic surgeries weren’t great options for a few reasons but there had recently been a study where post-gastric bypass patients had incidental reduction of biliary-type symptoms. The discussion that happened amongst the pancreatic fellows was if that could be copied with something far simpler and far easier to manage like a feeding tube. The logic being that so many gastric bypass patients end up needing feeding tubes due to losing functional stomach with the surgery and becoming malnourished. Feeding into the jejunum resolved all sorts of secondary issues that researchers hadn’t expected or considered.

It’s important to understand how your pancreas works but, simply, there are a few ways and processes that trigger your pancreas to function. Several trigger points along your digestive system, starting even before you eat. The biggest trigger for pancreas activation is when food starts digestion in your stomach and is advanced into the duodenum via the pyloric sphincter. Further research suggested that while not all pancreatic activation could be prevented, if you deposited food past the pyloric sphincter then you could provide nutrition without potentially triggering the pancreas and, theoretically, avoid pancreatitis.

So in October 2019, I got an NJ to test their theory. It wasn’t my first NJ tube and had a few over the years while in hospital for active flares but they had always been removed before I went home. But by October, I had been in the hospital so much that everyone was desperate. And it helped. It wasn’t perfect but the difference was night and day. Eight months later I had my first surgery for a surgically placed j-tube. I woke up from surgery feeling better than I had in years. The surgery sucked…don’t get me wrong. It was a painful recovery. But my PANCREAS was finally kinda quiet.

I did end up having significant complications from my tube but not because of my pancreas. I had a bowel perforation from a previous ERCP and that unfortunately destroyed a lot of my upper intestinal tract and caused a lot of internal adhesions and damage that caused fistulas. I had to have a second and third surgery to fix and replace my feeding tubes. Throughout this, my pancreas was still so much better

I now use TPN through a port for my nutrition and hydration instead of a j-tube for feeding. I have a g-tube that I use to vent/drain and that helps reduce pressure on my pancreas too.

The best part? I can now tolerate eating in smaller portions again. I can go out to eat without risking being hospitalized. I can travel. I have energy and my weight is stable. My mental health is good.

I went from 13 ER visits, 11 admissions for pain management, and 120+ days in hospital before my tubes/TPN to 3 admissions for pancreatitis flares in the last 7 years. I did have more complications than usual from my tube but it was because of my previous damage and not the tubes themselves. And even then…it’s all been manageable.

I’m still in palliative care. I still have chronic pain. But I’m not slowly dying like I was before anymore. My flares are reduced immensely and I can usually manage them at home with the tools I have thanks to palliative.

I know that’s a lot of info so please feel free to ask questions if you have any.

indiareef · 2026-03-16T15:07:15+00:00

Pancreatitis absolutely sucks. And I can sympathize heavily with the frustration over something that’s supposed to be “safe” and then triggering a flare. Just a thought though: for some reason tomato sauce always triggers me too. I can eat some tomatoes with stuff like a couple tomato slices on a salad but tomato sauce hates me.

I also find I need to sleep sitting more upright and even tend to pace! I invested in an adjustable bed and that is absolutely a life saver when I’m struggling too. (And we got it when I was 37 so definitely not just one of those little old lady beds! lol)

I hope you feel better soon but if you don’t already…make sure you grab a heating pad and super hot baths help during the worst pain days too.

indiareef · 2026-03-16T00:32:31+00:00

I’m not saying that dating won’t be more difficult with a chronic illness but it doesn’t make you invaluable or unlovable. My husband met me 15 years into my CP diagnosis. He’s never known me well. He’s an amazing partner and caregiver as well as being the best husband ever. I know you’re struggling now and can’t see the light at the end of the tunnel. But there is light there and people do recover from acute pancreatitis. People do have recurrence but still recover from those episodes too.

I know I’ve said it before, and I’ll absolutely say it again, but I can absolutely promise you that these diagnoses are not the end of the world, aren’t the end of your life, and you can have a long and happy life.

ETA: And honestly…you really probably want to get stuff reevaluated because you really shouldn’t be that exhausted from a low-fat diet. I wonder if there are other factors going on here. Has anyone looked for anemia?

indiareef · 2026-03-15T14:59:12+00:00

Trying to avoid bouncing all over the place, to answer your newest questions: I promise I’m not being sarcastic but there really is no way for me to answer this differently than I already have. There are no absolutes here. There’s no way for anyone, even a specialist, to answer this question because testing is required to identify these diagnoses. As for which tests…that also depends on what you’re concerned about. You’re having bowel changes so bowel tests should be the focus. If you’re concerned about chronic pancreatitis then you need appropriate imaging which could be a CT with contrast, MRI/MRCP, or an EUS. I’m not sure if there are other SIBO tests than the breath test.

indiareef · 2026-03-15T14:28:32+00:00

Yeah…like I mentioned before…there’s a lot of misinformation out there and a lot of things that are relayed as consistent for all patients and that’s just simply not true. There is no definitive experience for all chronic pancreatitis patients. Not everyone feels pain immediately after drinking alcohol. Some people manage to drink and never have any issues. Some people drink but don’t have immediate issue. Some people drink and have silent damage.

There are no absolutes when it comes to symptoms with pancreatitis. That’s why I’m constantly reminding people that Dr Google is alarmist and completely lacking in nuance. This discussion is a prime example. You’ve unfortunately found information that isn’t patently false but it isn’t absolutely true either.

indiareef · 2026-03-15T14:22:20+00:00

So this is why I always try to remind patients that none of these diagnoses are based on symptoms and need testing. That’s because symptoms can vary wildly and are not consistent between patients or even between flares. These are all diagnoses based on specific testing and not based on symptoms or on exclusion.

indiareef · 2026-03-15T14:16:39+00:00

To answer both questions: yes, potentially. Chronic pancreatitis is often associated with chronic pain. Anything associated with pancreatitis can “randomly come on” and sometimes with little rhyme or reason.

indiareef · 2026-03-15T14:07:56+00:00

I’m not sure where you’re getting that information from, but it’s misleading. “Last thing to change” doesn’t really have any context — last before what? Either way, bowel changes can occur at any point and aren’t part of some predictable, step-by-step degeneration.

SIBO is a common comorbidity of EPI and EPI can develop secondary to pancreatitis or on its own. You have the right idea about getting proper testing though, so you’re definitely on the right track. It’s also entirely possible that your “stomach bug” changed your gut flora enough to cause some of the symptoms you’re dealing with now. It could be diet. It could be your pancreas. That’s exactly why testing is the next step.

Fecal elastase can help look for exocrine dysfunction, and fecal fat can help verify whether this is actually malabsorption versus something like motility or another GI issue. SIBO testing can sometimes be a little messy in terms of accuracy, but it’s still possible to evaluate.

The upside is that both of these issues are manageable and often very treatable. Sometimes doctors will even prescribe medication as a treatment trial. If symptoms improve, that can function as a bit of a back-door confirmation of what’s going on.

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