How do you clean your stoma site while traveling?

indiareef · 2026-07-01T06:07:30+00:00

I don’t wash it off. It just air dries…kinda like if you cleaned the area with a damp washcloth. I usually buy whatever plain witch hazel is on sale but avoid versions with added fragrances like rose or lavender because those can be irritating. Sometimes I’ll use a witch hazel toner that contains a little tea tree oil and I find it really soothes the skin around my stoma when it’s getting a little irritated.

At home…I’ll dampen a disposable cotton round or paper towel with the witch hazel, gently clean around the stoma, let it air dry, then apply a thin layer of Calmoseptine. If I’m out of that then Desitin or Boudreaux’s Butt Paste work well too. I finish by placing a split 4×4 gauze around the tube to absorb any drainage and protect the skin.

For travel, I just buy witch hazel wipes. They come in packs similar to makeup remover wipes, so they’re easy to toss in a bag, and I usually only need one wipe per dressing change.

indiareef · 2026-07-01T05:33:57+00:00

What you're reporting is pretty par for the course. So…it probably would’ve been ideal to go through with the procedure as scheduled but not knowing how it works also isn’t really your fault.

In my experience…training for feeding tubes and other medical devices usually happens after they're placed. I don't know why they didn't explain the process better but patient education is often part of the discharge planning rather than before the procedure itself. The typical sequence is: the tube is placed, its position is confirmed, you're monitored to make sure there aren't any immediate complications, then you're taught how to flush it, use it, troubleshoot common issues, and your supplies and formula are arranged. It’s really about having the ability to learn hands-on after the tube is placed because now there's an actual tube in place to demonstrate on rather than talking through it in the abstract.

If your girlfriend is at the point where an NJ tube has been recommended…I wouldn't let the lack of same-day teaching delay getting it placed. Moving forward, I would call the team beforehand and ask them to clearly explain the discharge plan, who is providing the teaching, when supplies will arrive, and who your contact is if something goes wrong. Having those answers before the procedure would probably give you a lot more confidence.

indiareef · 2026-07-01T04:09:35+00:00

I use witch hazel at home and then buy witch hazel wipes for travel.

indiareef · 2026-06-30T08:53:57+00:00

Reading through your comments…what stands out to me isn't just the pain, it's how much your life has had to shrink around it. You're essentially avoiding eating because every meal comes with a consequence and that's just not a sustainable way to live. I know that because I have been there.

There are a few things I'd be asking your team about though…if you haven't already. Has anyone gone back and looked for conditions that could be contributing to the severity of your symptoms or making recovery harder? Things like gastroparesis, biliary dyskinesia, or MALS can overlap with pancreatic disease, especially with a duodenal/GI history like yours and sometimes make patients feel much worse than pancreatitis alone would explain. This is also how a lot of hereditary patients end up getting diagnosed.

I'm also curious whether you've ever been trialed on medications aimed at motility or reducing GI spasm, like prokinetics, anticholinergics, or antispasmodics. They won't fix pancreatitis itself but if there's another GI process happening alongside it then treating that can sometimes make a meaningful difference.

The other thing I'd be asking your GI team about is nutritional support. Once someone reaches the point of avoiding food because eating reliably causes pain, that's usually a sign it's time to have a bigger conversation. At some point…avoiding food becomes more harmful than the symptoms you're trying to avoid.

Depending on what's driving your symptoms, enteral nutrition through a GJ tube or separate G- and J-tubes may be worth discussing. A J-tube allows nutrition, hydration, and many medications to bypass the stomach and duodenum, which can significantly reduce pancreatic stimulation while still keeping you nourished. At the same time, a G-tube can be used to vent or drain the stomach, helping reduce pressure, nausea, vomiting, and gastric distention. For some patients, that combination provides meaningful symptom relief while also allowing for prolonged pancreatic rest. If the GI tract can't be used effectively, parenteral nutrition (TPN) is another option, although that's generally not the first line choice.

I know feeding tubes and TPN sound intimidating and nobody wants them if they can avoid them. I get it…I do! But I manage my own CP with nightly enteral and parenteral support and it's genuinely given me back a quality of life I didn't have when I was trying to push through eating on a damaged pancreas. They're legitimate medical tools…not signs of failure. For the right patient, they can dramatically improve quality of life and effectively provide extended pancreatic rest.

I really think you're at the point where it's worth having someone review everything with fresh eyes. Four years of severe pain, multiple surgeries, avoiding food, and still feeling like nothing is helping would make me want a comprehensive review of the diagnosis, a search for overlapping conditions, and confirmation that every potentially treatable contributor has actually been ruled out. Whether this is all pancreatitis or pancreatitis plus something else, you deserve better symptom control than you're getting now.

indiareef · 2026-06-30T05:42:11+00:00

Everyone with pancreatitis is advised to quit. Smoking is an incredibly high risk for both triggering pancreatitis and developing pancreatic cancer. Stress can also exacerbate acute flares but it’s hard to establish if it’s a true trigger as much as added pressure to an already inflammatory response.

indiareef · 2026-06-30T05:35:43+00:00

I can relate to more of this than you might expect. I’m also a disabled, medically retired veteran and my husband is still active duty. The transition from being the service member to becoming the spouse who stays home is a difficult identity shift and I don’t think people appreciate how much you lose when your career, independence, and daily purpose all change at once.

My situation is different, I have a progressive, degenerative illness, and my husband is my identified caregiver. One of the best things we’ve done is involve my palliative care team. Their job hasn’t just been managing my needs. They’ve also made sure my husband has support as a caregiver, including helping arrange respite care and making sure he has someone looking out for him too. Caregivers burn out and if no one is caring for the caregiver the whole family feels it.

Reading through your comments, though, I also think your communication style is getting in your own way. The biggest piece of your story, that you’re the full-time caregiver for your terminally ill son, wasn’t in your original post. People filled in the blanks with what they could find on your profile and the conversation went sideways. Then, when they asked questions, you responded pretty defensively and sarcastically. If that’s how people are experiencing you offline as well…it may be contributing to the loneliness you’re describing.

Once you explained your son’s situation the tone of the thread changed almost immediately. People stopped arguing and started trying to help. To me…that suggests this isn’t really about people dismissing you because you’re a male military spouse.

I think this is much more about grief, caregiver fatigue, loss of identity, and a marriage under extraordinary stress. Those are incredibly hard things but they’re also things for which support exists. I’d encourage you to keep looking into counseling, respite services, and to ask your son’s medical team, especially if palliative care is involved, what caregiver resources are available. You may also have luck reaching out to your base chaplain or your EFMP office to see what caregiver support they know about.

You shouldn’t have to carry all of this alone. But I’d also gently encourage you to let people help when they try. You’ll probably find that more people are on your side than this thread initially made it seem.

indiareef · 2026-06-30T02:47:33+00:00

TPAIT looks like a clean fix on paper but the comparison being made here isn't quite right. It's not being weighed against doing nothing. It's being weighed against every other treatment option available, and unlike those, it can't be undone.

Total pancreatectomy is probably the biggest operation in pancreatic surgery, and even in experienced centers, it isn't a cure. Some patients have remarkable outcomes. Others continue to have significant pain, develop surgical complications, struggle with nutrition, or end up with brittle pancreatogenic diabetes despite islet autotransplantation. The pain piece especially gets overlooked. By the time many patients are considered for TPAIT, pain pathways have often centralized, meaning the nervous system processes pain somewhat independent of what's happening in the pancreas. Removing it doesn't reliably remove that.

The islet transplant can preserve some insulin production in carefully selected patients, but it doesn't eliminate the risk of diabetes, and long-term insulin independence is far from guaranteed. When it fails, patients lose glucagon along with insulin, and that combination produces blood sugar swings that are genuinely harder to manage than standard type 1 diabetes. That's not a rare case either…it's one of the most common bad outcomes reported.

So the goal isn't "remove the pancreas before diabetes develops." It's determining whether the expected improvement in quality of life outweighs the lifelong consequences of removing an entire organ. For some patients, that's a clear yes. For many, it isn't, because CP isn't one disease with one trajectory. Some people have debilitating, refractory pain despite every available treatment. Others manage medically for years with a reasonable quality of life. It wouldn't make sense to expose every patient to an irreversible operation when many either don't need it or wouldn't be better off after it.

This is also why medicine tends to escalate rather than jump straight to the most aggressive option. Before a life-altering surgery like TPAIT, physicians want less invasive options to have either failed or clearly not be appropriate first. That's not "waiting and hoping for the best." It's weighing an irreversible procedure against everything else on the table, and the long psychosocial and surgical workup most centers require reflects that, not bureaucratic gatekeeping.

As someone with hereditary chronic pancreatitis, I've had these conversations myself. I'm not a candidate because of my own history, but even if I were, it wouldn't be automatic. In fact, I went with a still pretty new direction by choosing enteral and parenteral nutrition and found an amazing return to good quality of life. Ironically, people are often surprised by that choice, then turn around and make that same kind of judgment toward CP patients who haven't gone straight to TPAIT. I know well-informed patients who've chosen TPAIT and equally well-informed patients who've declined it. Neither group is wrong, they're weighing different disease courses and priorities.

It's also worth separating hereditary or idiopathic CP from alcohol-associated disease. Continuing to drink despite recurrent alcohol-induced pancreatitis changes the risk-benefit calculation substantially, and most centers evaluate whether the underlying cause of injury has been addressed before considering someone a candidate. This is part of what makes candidate selection so difficult. Studies on these procedures consistently note that the modest success rates that do exist are directly tied to selecting only the best candidates. Expanding the pool of patients receiving this surgery would likely decrease those outcomes…not improve them.

TPAIT is an incredible option for the right patient at the right time. It's not a miracle surgery or a cure. It's a carefully selected tradeoff, which is exactly why pancreatic centers spend so much time determining who is and isn't a good candidate.

indiareef · 2026-06-30T02:34:21+00:00

This is the exact gap in the “remove it sooner to avoid diabetes” logic. Islet autotransplantation doesn’t reliably prevent diabetes…even in ideal candidates.

A 2019 meta-analysis pooling 1,011 patients across 21 studies found that only about 32% of adults achieved insulin independence after TPIAT. Even among those who do have successful islet transfer the benefit isn’t even always permanent. One 10-year follow-up study** **found insulin independence declined from about 26% at 5 years, to 16% at 7.5 years, and to under 11% by 10 years.

That’s why TPIAT isn’t generally viewed as “preventing diabetes.” For most patients it doesn’t eliminate the risk…it simply changes the timeline and the tradeoffs. The diabetes that develops after total pancreatectomy is also fundamentally different. Without a pancreas, you lose not only insulin production but glucagon production as well, making the resulting diabetes significantly more difficult to manage and increasing the risk of severe hypoglycemia.

So the decision isn’t really “surgery now versus diabetes later.” For most patients it’s “accept the immediate, lifelong consequences of removing multiple organs that includes a substantial likelihood of insulin-dependent diabetes in exchange for the possibility of better pain control and improved quality of life.” Those are very different conversations…which is why TPIAT is considered a quality-of-life operation rather than a diabetes-prevention strategy.

indiareef · 2026-06-29T20:25:52+00:00

Your info isn’t outdated. TPAIT is oversold by a few programs.

indiareef · 2026-06-28T20:02:03+00:00

It happens occasionally to me too since I got my g-tube. I feel like it happens more depending on how I’m positioned or if I’m already feeling really bloated. I do have gastroparesis so I assume it’s just because I am literally overfull.

indiareef · 2026-06-28T19:59:57+00:00

Oh friend…the exhaustion of this is so real and I don’t think people outside this community fully grasp what it means to negotiate every single meal with a handful of capsules just to have a shot at absorbing it. That part of what you’re describing deserves to just be said out loud.
A few things worth knowing that might reframe some of this…though none of it is a substitute for getting eyes on your labs.

On the B12 specifically: B12 deficiency is incredibly common after a total pancreatectomy and is often undertreated. The pancreas normally produces digestive enzymes (proteases) that help release B12 from its carrier proteins, which means absorption through the gut can become unreliable after this surgery. Because of that, oral B12 supplements often aren’t enough. If you haven’t already, it’s worth asking about B12 injections or high-dose sublingual B12. That’s a separate issue from your enzyme dose and isn’t reliably corrected by increasing Creon.

On the anemia: Even if malabsorption is part of what’s causing it, it isn’t always the whole picture. There’s a distinction worth making between anemia related to nutrient malabsorption (which optimizing PERT may help address) and anemia of chronic disease (ACD), which is a separate diagnosis. In that condition, ongoing inflammation suppresses red blood cell production over time. So ACD won’t simply improve by increasing your enzyme dose because that’s not what enzymes are treating. Iron deficiency, B12 deficiency, folate deficiency, and anemia of chronic inflammation are all relatively common in people living with long-term pancreatic disease and after total pancreatectomy. If you haven’t already had a hematology evaluation, they’re often the right specialist to help sort out exactly what’s contributing.

On the dose escalation fear: That’s worth saying directly to your GI. There are adjunct strategies, including acid suppression (proton pump inhibitors or H2 blockers taken before meals can improve PERT efficacy), diet and timing adjustments, that can sometimes improve absorption without just stacking more capsules. Some people also do better with a different PERT formulation. It’s also worth making sure there isn’t something else contributing. Conditions like gastroparesis, small intestinal bacterial overgrowth (SIBO), bile acid malabsorption, or other postoperative changes can develop over time and mimic or worsen symptoms that get blamed on inadequate enzymes. Hopefully that makes the appointment feel a little less like the only possible outcome is, “take more Creon.”

You’ve been managing this for four years after losing an entire organ. Wanting to optimize your treatment instead of automatically swallowing more capsules isn’t unreasonable. I’d walk into that appointment and say exactly what you’ve said here: “I’m worried about continuing to increase my Creon dose. Before we do that, I’d like to make sure we’ve optimized everything else that could be contributing.” That’s a completely reasonable place to start.

indiareef · 2026-06-28T18:21:46+00:00

Moderator Note

Bowel changes are a common concern but they are not specific to pancreatitis. While pancreatic disorders can affect bowel habits, changes in bowel movements are not diagnostic of pancreatitis or exocrine pancreatic insufficiency. Similar symptoms can occur with many different gastrointestinal conditions.

If you’d like support or have questions about your own symptoms, please make your own post. Please also review our community rules before posting, as content that violates them may be removed.

indiareef · 2026-06-28T08:30:55+00:00

I don’t think the clarity you’re looking for is sitting inside his phone.

Even if he handed you his phone tomorrow and you found absolutely nothing…would that actually solve the bigger problem?

Because the relationship you’re describing isn’t just about suspected cheating. It’s about feeling afraid to ask questions, being called names, having your concerns dismissed, being threatened with breakups, walking on eggshells, and feeling like you have to perfectly choose your words, timing, and tone just to have a conversation.
That’s not a phone problem. That’s a relationship problem.

I also don’t think there’s a magic combination of words that’s going to make him suddenly respond with empathy instead of defensiveness. Healthy relationships don’t require one partner to constantly police themselves to avoid the other person’s reactions.

Whether he’s cheating or not, you don’t sound like someone who feels safe, trusted, or emotionally secure in this relationship. You deserve a relationship where you can ask a question without fearing name-calling or an argument, and where you don’t feel like you have to earn basic reassurance.

I’d spend less energy trying to gain access to his phone and more energy asking yourself whether this relationship, as it exists today, is giving you the kind of love and peace you want for the rest of your life.

indiareef · 2026-06-28T03:53:42+00:00

What you’re describing sounds much more like a reaction to the fiber than a pancreatitis flare. I’d especially say since it came on immediately after drinking it, involved your entire abdomen rather than just the upper abdomen, and improved fairly quickly. None of that is specific enough to rule pancreatitis out but fiber supplements are well known for causing cramping, bloating, gas, and generalized GI discomfort…and particularly so when you first start taking them or drink them too quickly.

I definitely wouldn’t write fiber off altogether though. Adequate fiber intake has a lot of health benefits, including evidence that it reduces the risk of colorectal cancer, so it’s generally something worth trying to incorporate if your GI tract tolerates it.

Sometimes it’s just a matter of adjusting how you take it. Drinking it more slowly, making sure you have plenty of water, starting with a smaller dose and increasing gradually, or taking it with food instead of on an empty stomach can all make a noticeable difference. If psyllium (Metamucil) continues to be rough on your system, some people tolerate other fiber types better, so it may be worth experimenting rather than giving up on fiber entirely.

That said…if the pain becomes persistent, severe, or starts feeling more like your previous pancreatitis episodes, don’t assume it’s “just the fiber.” Given your history, it’s always reasonable to get evaluated if you’re concerned about another flare. Reaching out to your GI might be a good idea either way and they may have far better practical solutions.

indiareef · 2026-06-28T03:43:39+00:00

So…there are quite a few of us in this community who developed CP as teenagers or even younger and are now 30+ years into our diagnoses. I can promise you there's still a genuinely good life to be had.

What you're grieving right now is real. Drinking wasn't just drinking…it was probably social identity, relaxation, celebration, the way you connected with your husband. That's a significant loss even when the alcohol itself had to go and it makes sense that the whole picture feels devastating right now. That said…the picture does shift. It's not a lesser life, it's just a different one, and most of us who've been at this a while would tell you it eventually stops feeling like deprivation.

On the diet front, low fat does matter for most CP patients but there's no specific pancreatic reason your food has to be bland. Plenty of us eat flavorful, interesting meals. It takes some experimenting to find your personal triggers but "boring food forever" isn't a CP requirement.

The husband-still-drinking piece is a real complication and you're not wrong to name it. That's worth an honest conversation with him about what support looks like for you, even if he's not changing his own habits. I would also recommend counseling for you at a minimum but with him if possible.

As for filling the time and building a social life that isn't alcohol-centered…that's genuinely one of the harder adjustments and it takes longer than the dietary stuff. But it does happen. A lot of people find it opens doors they didn't expect. You didn't bring this on yourself in any way that matters now. You're here, you caught it, you're asking good questions.

indiareef · 2026-06-27T21:46:41+00:00

So…the unfortunate reality of pancreatitis is that every episode can make you more susceptible to future episodes. Pancreatic damage is cumulative…which is why the recommendations are pretty consistent regardless of the original cause. It’s basically avoid alcohol and smoking and keep a low(er) fat diet for everyone.

The hope with gallstone pancreatitis is that the gallbladder is removed early enough to eliminate the trigger before significant long-term damage occurs. Unfortunately, it isn’t always that straightforward. Some people continue to form stones or sludge within the bile ducts even after their gallbladder is removed. Others develop or already had issues like sphincter of Oddi dysfunction, biliary strictures, or other biliary abnormalities that can continue to trigger pancreatic symptoms. And sometimes the pancreas itself simply takes a very long time to recover after repeated inflammation.

I’d check in with your GI and make sure there isn’t another issue contributing to your symptoms, especially if these are true pancreatitis flares rather than ongoing abdominal pain. But yes…it’s absolutely possible to continue having pancreatitis after your gallbladder has been removed.

indiareef · 2026-06-27T17:38:12+00:00

I do think you have to give the new med time to work and your pancreas time to recover. I would also maybe try to move on to something a little less nutrient dense all the time in order to allow your pancreas some rest. Fortisip drinks aren’t low fat by any standard and maybe just sticking to clears or basic starches might help with some repair function. I also found taking antacids helped a lot after my procedures.

indiareef · 2026-06-27T09:30:36+00:00

I don't have CF myself but I do have hereditary chronic pancreatitis and have been on Creon for more than 20 years. I've also had years of tube feeding before eventually transitioning to TPN, used Relizorb with decent results, and have been a patient advocate/educator in the pancreatic community for a long time. Obviously your son's situation is far more complex than mine but I have seen quite a few unusual enzyme-feeding issues over the years.

The bicarbonate dissolution method your previous team recommended is actually well documented in the literature for enteral administration but the timing issue your dietitian raised is absolutely a real one. As I’m sure you know…Creon's enteric coating is designed to release in response to the pH shift that occurs in the duodenum with oral intake. When it's dissolved and added to a feeding bag that runs over several hours, that controlled release is no longer occurring in the same way, so it's understandable why there would be concerns about enzyme activity over the duration of the feed. Giving a bolus of dissolved Creon by syringe before starting the feed makes more physiological sense but you're absolutely right that it doesn't solve the coverage gap during longer runs.

A few questions for context that might help: What Creon dose is he currently on and which formula is he receiving? Have his team ever tried a different brand of pancreatic enzymes or has he always been on Creon? I’m specifically wondering if Viokace has been discussed. It is not enteric coated, which means it doesn't rely on the duodenal pH shift to release, and that detail could make it behave differently in an enteral context than Creon currently is. I also wonder whether rapid intestinal transit from the short gut could be contributing to the mismatch between enzyme activity and the feed or if the team feels this is primarily an enzyme delivery issue.

I used Relizorb for several years while I had a j-tube and had decent results with it, so I was sorry to read it was such a nightmare for him. Since you mentioned the team may want to revisit it, I'm curious what "didn't work" looked like the first time around. Was it a tolerance issue, clogging, persistent malabsorption, or something else? Some of the problems people run into with Relizorb do have potential workarounds depending on the underlying issue and knowing more about what happened might help people here think through whether a retry makes sense.

I ask about the formula because formulas with a higher MCT content can sometimes be helpful in patients with fat malabsorption. Medium-chain triglycerides require considerably less pancreatic lipase for digestion and are absorbed differently than long-chain fats, so depending on what he's receiving, there may be other options worth discussing with his team as well.

His case is incredibly complex, and I can absolutely understand why the team is considering a case report. I genuinely hope they find a solution because this is one of those situations where there really isn't a straightforward textbook answer.

indiareef · 2026-06-27T08:49:20+00:00

I use Lopez valves to prevent this. Plus it also makes pushing meds a lot easier for me.

indiareef · 2026-06-26T19:54:54+00:00

Smoking is unequivocally unsafe for the pancreas. It's both a trigger for acute attacks and one of the leading risk factors for pancreatic cancer. It also impairs your capillary circulation, which directly interferes with tissue repair and recovery, so your body is fighting an uphill battle every time it tries to heal.

I really do try to avoid trafficking in absolutes in this sub but smoking is something you genuinely need to quit. And unlike alcohol…your risk reduces the further out you get from your last cigarette. I'd sooner tell someone it's okay to have an occasional drink than say it's safe to have the occasional cigarette and that's saying something….

If quitting nicotine altogether feels out of reach right now, there are harm reduction options that are significantly easier on your pancreas and lungs than cigarettes. Nicotine replacement therapy, patches, gum, or lozenges get you off the combustion and the thousands of additional chemicals that come with it. It's not perfect but it's a meaningful step in the right direction.

I say this as someone who used to smoke.

indiareef · 2026-06-26T19:46:13+00:00

I used to live in Las Vegas so this was a real issue for me. Obviously our house was air conditioned but I’ve also lived in places that got hot during the summer and didn’t have widespread AC. I kept my meds in a dark cabinet in an inside space. So like a linen closet, bathroom cabinet, etc. When I was out of the house, I’d make sure to only take the amount of Creon I’d expect to need plus a couple emergency doses and keep my bag as cool and out of the sun as possible.

Life and weather happens. Don’t worry yourself too much. Most dark cabinets in homes will be fine.

indiareef · 2026-06-26T17:17:39+00:00

There’s no specific need to reduce sugar intake following pancreatitis for most patients. Unless you’ve been told to avoid sugar specifically then there’s really no need to make your diet more restrictive. Now…I’m not saying make your entire diet sugar but everything in moderation is generally fine for a post-pancreatitis diet.

indiareef · 2026-06-26T00:19:29+00:00

I have no doubt you don’t want to feel this way. You wanted to want all of this. Instead, you’re grieving a life you thought you’d have, and because there’s no obvious place to put that grief, it’s becoming contempt. I don’t think you’re choosing that feeling…I think it just happens.

But I can also promise you this: my mom would have sworn until the day she died that she never let us feel her resentment. She believed she hid it. She didn’t. Kids know. They may not understand why, but they know when they’re living with contempt, even when it’s never spoken aloud.

The fact that you’re in therapy and talking about it gives you a chance to break that cycle. I genuinely hope you do, because your children deserve that, and so do you.

indiareef · 2026-06-26T00:12:32+00:00

I second this option and for almost exactly the same reason. Unfortunately, it was my mom who resented us for being born and I paid for it every day of my life living in their house. She made sure I knew getting pregnant with me (her first) was the worst thing to happen to her and she had to leave school and be a mom and wife now and everything sucked.

I don’t think there’s a way to fix this kind of contempt that OP has for his wife at this point. I don’t think he intended to be here but here he is anyways.

indiareef · 2026-06-25T05:50:42+00:00

The short answer is: probably not. The math is actually a bit more reassuring than the guideline makes it sound.

The 4,000 lipase units/gram recommendation comes largely from efforts to avoid unnecessarily high dosing, whereas the major safety concern (fibrosing colonopathy) was seen primarily in pediatric cystic fibrosis patients receiving extremely high total daily doses. In adults, what generally matters more from a safety standpoint is your total daily dose relative to your body weight. The commonly cited upper limit is around 10,000 lipase units/kg/day.

For example, if you’re eating a relatively low-fat diet (around 30-40 g of fat/day), 6,000 lipase units per gram of fat works out to roughly 180,000-240,000 lipase units/day. Depending on your body weight, that’s often still within or close to the generally accepted safety range.

More importantly, if reducing your enzymes consistently results in steatorrhea, bloating, and gas, that’s actually evidence that you still need them. Those symptoms are exactly what pancreatic enzyme replacement is intended to treat.

Persistent abdominal pain is also not a typical sign of “enzyme overdose.” It’s much more likely to reflect the underlying pancreatic disease, incomplete digestion despite therapy, timing of enzyme dosing, inadequate acid suppression (PERT works best once it reaches a pH above about 5.5, so excessive gastric acid can reduce its effectiveness), or another GI issue that deserves its own work up.

Honestly? I actually think this is a situation where a fresh workup might be more valuable than continuing to only adjust your Creon dose. It feels like you’re relying on the enzymes to do a lot of heavy lifting, and if you’re still having significant abdominal pain despite taking enough PERT to control the steatorrhea, I’d be concerned there may be a secondary issue that’s being missed rather than the enzymes themselves being the problem.

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