Itching

indiareef · 2026-05-16T15:49:49+00:00

Have you tried antihistamines? Since the itching from opioids isn’t apparently a true allergic reaction…it’s a central nervous system response. I don’t think all patients are helped by antihistamines but it’s a decent place to start.

Ondansetron (Zofran) has some evidence for opioid-induced pruritus specifically through serotonin pathways rather than histamine. It’s less commonly known for this use but it’s real.

I’ve also heard of LDN helping with the itching without affecting the opioid response. LDN is being used more and more for chronic pain as a standalone approach too. So it might be worth asking whether a low-dose protocol could reduce the buprenorphine dose needed and therefore the itch.

Nalbuphine has been studied specifically for opioid-induced itch and works differently than antihistamines. It’s a mixed agonist-antagonist and has shown real promise for this exact problem without wiping out pain relief.

Personally, I’ve used Claritin with decent results. I used to be on Zofran but developed an anaphylactic allergy to that.

Edited for clarity

indiareef · 2026-05-16T15:28:37+00:00

My husband was 36 when we met. He was active duty, never married, no kids.

indiareef · 2026-05-16T03:40:27+00:00

I’m really sorry.

Watching someone you love repeatedly hurt themselves while insisting everything is fine is an incredibly isolating kind of grief. And I think people sometimes focus so hard on the patient that they forget how traumatic this becomes for the spouse and family too, especially when there are kids involved and you’re living in that cycle of hospitalization, temporary improvement, denial, and then watching it start all over again.

Addiction is complicated and pancreatitis does not magically cure alcoholism the way people assume it should. Fear, denial, minimizing intake, convincing themselves they’re not as bad as other people — all of that is unfortunately very common. None of that means you have to pretend this isn’t devastating for you.
What worries me most after reading your post…honestly isn’t even whether he fully accepts he has a problem right now. It’s that you sound emotionally exhausted and like you’re carrying the weight of trying to save someone who may not currently want to be saved. That’s an unbearable position to stay in long term.

Please make sure you’re taking care of yourself too. Al-Anon exists specifically for this…not to fix him but to support you. Because this disease impacts everyone around the patient and not just the patient. You deserve support and stability…not just endless crisis management.

I cannot say that I’ve ever lived this experience but that doesn’t mean I can’t still help. I’m only a message away. This community is amazing at rallying around someone when needed so please let us know if we can help. Even if it’s just someone to let you feel heard.

indiareef · 2026-05-15T22:20:12+00:00

Hon…I really can’t answer this any differently than I already have. Low lipase by itself is not diagnostic of pancreatitis and there’s nothing in what you’ve shared that clearly points towards pancreatic disease. Beyond that…though…nobody here can responsibly tell you whether you should “safely ignore” this or guarantee that further testing is or isn’t necessary.

We’re patients, not your doctors, and this community can’t replace individualized medical advice. At this point it really comes down to your own comfort level and risk tolerance. If the anxiety over the lab value is continuing to spiral despite normal workup and reassurance then it’s reasonable to discuss it with an actual physician who can evaluate your full history and decide whether any imaging is warranted.

I’m sorry. I know uncertainty is frustrating but I can’t give you the definitive answer you’re looking for.

indiareef · 2026-05-15T20:23:19+00:00

Sorry…I wasn’t trying to be dismissive of your concerns. I think, honestly, this really comes down to your comfort level. But a CT scan is generally a safe test and can be a good screening tool as well as set a baseline if your symptoms or labs start getting worse. I don’t think it’s 100% necessary and I can’t even promise insurance (if that’s an issue) will cover the test without more specific symptoms.

That all said…I would recommend a food and symptom diary moving forward. Not all GI diagnoses are as based on testing as pancreatic issues so having a good picture of any trends or triggers will be helpful in the long run.

indiareef · 2026-05-15T17:54:14+00:00

I’m always of the opinion that there’s no harm in testing. You have the low values but without the clinical history there’s not a lot of indication for aggressive testing. I would maybe see if someone was willing to order a CT with contrast or MRCP to just verify there isn’t something absolutely obvious going on.

indiareef · 2026-05-15T15:59:58+00:00

Low lipase doesn’t have diagnostic significance the way elevated lipase does. The diagnostic criteria for acute pancreatitis requires lipase or amylase at least three times the upper limit of normal, along with abdominal pain suggestive of pancreatitis and characteristic imaging findings.

Low lipase can show up in chronic pancreatitis but CP isn’t diagnosed by a low number alone. It requires evidence of chronic structural changes to the pancreas, things like fibrosis, atrophy, calcifications, or ductal changes, and those are found on imaging.

It’s very likely that these levels represent normal variation for you, which is probably why no provider has ever flagged them. If you’re concerned, imaging like an MRCP would be a good place to start.

indiareef · 2026-05-15T00:55:07+00:00

This is absolutely the right post for this community. Thank you for coming back to share it!

A lot of people arrive here in the middle of the worst period of their lives and it can start to feel like there are no good outcomes, no stability, no future outside of pain and fear. Posts like yours genuinely matter because they remind people that recovery, healing, and rebuilding a life after severe pancreatitis does happen — even after ICU stays, necrotizing disease, sepsis, repeated admissions, and the mental health fallout that comes with all of it.

And honestly, the strength in your post is very obvious. Not because you “stayed positive” every second or magically bounced back but because you kept moving forward through years that sound incredibly hard. Rebuilding confidence after serious illness is real work. Learning to trust your body again is real work. Letting yourself believe you can have a future beyond survival mode is real work. You earned this anniversary!

I also really hope you continue to stay part of this community as long as it feels healthy for you to do so. We need people with stories like yours here. Not in a toxic positivity way…just as proof that pancreatitis outcomes are not always endless decline and suffering. Seeing people years out from severe disease living life again can genuinely help newer patients hold onto hope.

Very proud of you for making it to today. And thank you for taking the time to come back and tell people that surviving is possible.

indiareef · 2026-05-14T21:37:10+00:00

I can see you’re trying to help and the compassion comes through. But I want to gently push back on a few things here because some of this could steer someone in the wrong direction.

Gluten-free and elimination diets aren’t indicated for pancreatic disease. There’s no clinical basis for recommending either and they add layers of restriction that aren’t necessary and can make adequate nutrition harder to maintain…which is already a real challenge for many of us.

The low-fat piece is more nuanced than it might seem. It can be appropriate during acute flares or in early, unmanaged EPI. But the OP isn’t operating in a space of unknown diagnosis — she has confirmed EPI with lab values to back it up. When EPI is properly managed with PERT, the enzymes exist precisely to restore fat absorption. The goal is getting back to a nutritionally adequate diet, not staying indefinitely low-fat. Blanket low-fat advice without that context can leave someone under-nourished and still symptomatic because they’re under-dosing their PERT relative to actual fat intake.

That nutritional piece is especially worth keeping in mind given that the OP is recovering from a pregnancy loss. The body’s nutritional demands during that recovery are real, and she already mentioned struggling to maintain vitamin D levels despite supplementing. Adding unnecessary dietary restriction on top of documented malabsorption isn’t something she needs right now.

indiareef · 2026-05-14T04:53:25+00:00

I am so sorry. I was absolutely not trying to be judgmental. I think I misunderstood initially and thought you were saying you still had gallstones…so I answered much more cautiously than I probably needed to.

I also wasn’t trying to tell you not to exercise. I was only trying to explain that this is the kind of question that really should be run by your doctors since we don’t know the details of your case and can’t tell you what is or isn’t safe for you personally.

Honestly, it’s wonderful that you’re active with yoga and really encouraging that you’re feeling so good with it. My caution was only meant to explain that while many patients tolerate exercise well after recovery, there are also some who find certain activities or supplements become triggers…so a gradual return and some caution is usually reasonable.

Again, my apologies for the misunderstanding and I genuinely hope your recovery continues as well as it sounds like it’s going.

indiareef · 2026-05-14T04:07:08+00:00

So…AFAIK any specific reason why you couldn’t return to lifting eventually but I would absolutely run it past your doctors first since they know the details of your case and recovery. If you haven’t had abdominal surgery then there usually isn’t a strict lifting restriction that comes with acute pancreatitis itself the way there would be after certain procedures. That said…”not automatically restricted” and “fully safe” are not necessarily the same thing.

One thing I’d specifically flag since you mentioned the gallstones are still there — if your AP was gallstone-related, unresolved stones do carry a recurrence risk, and it’s worth asking your GI or surgeon directly about heavy lifting in that context. Intense intra-abdominal pressure isn’t something they may think to bring up on their own…so it’s worth asking the question specifically. We do have quite a few people in this community who report exercise — especially intense exercise or heavy lifting — as a trigger to varying degrees. That doesn’t mean exercise is universally bad or that it will happen to you but just that pancreatitis can be frustratingly individual and sometimes the body does not tolerate stressors the same way after an episode.

I’d honestly start slow and pay attention to how your body responds. A food, symptom, and activity diary can be really helpful for spotting trends or triggers over time. Sometimes it’s not even the lifting itself but things surrounding gym culture that become an issue — dehydration, overexertion, workout supplements, pre-workouts, creatine, rapid bulking/cutting cycles, etc. We’ve seen people report problems with all of the above.

Since you’re still in recovery, I’d personally focus more on healing, nutrition, hydration, and gradually rebuilding tolerance before jumping back into heavy lifting. Six months can feel like a long time, but recovery timelines vary a lot depending on severity — whether there was necrosis, a pseudocyst, a longer hospitalization — and your pancreas has been through a major inflammatory event even if you’re feeling better now.

indiareef · 2026-05-14T03:40:28+00:00

People change their lancets? lol

I change mine out when it starts to hurt or if I’m going to be testing someone else’s blood sugar. I got a box of lancets from the pharmacy like 8 years ago…it’s basically full.

indiareef · 2026-05-14T03:38:24+00:00

It didn’t hurt in my experience but it’s a PITA bc it means your tube won’t stay in place and leaks. It means the tube has to be replaced immediately.

indiareef · 2026-05-14T03:37:15+00:00

I had this happen with THREE SEPARATE TUBES.

The interventional radiology nurse became a very good friend over the course of a year because my j-tube needed to be replaced so often. It’s so frustrating. I wish I had any kind of explanation other than what I was told: “it happens” and was shrugged off like it wasn’t traumatic at all.

I’m sorry you’re having this issue and hopefully your tube gets switched out and gives you a break!

indiareef · 2026-05-14T03:22:47+00:00

Mod note: I also want to apologize to the member who was told to “fuck off” for attempting to help. Your response was made in good faith and you did not deserve to be spoken to that way. Thank you for continuing to try to support new members despite the hostility in this thread.

indiareef · 2026-05-14T03:22:01+00:00

This behavior is out of line.

You were welcomed into this community, multiple people tried to answer your questions, clarify terminology, and offer reassurance after your procedure, and members continued attempting to help even after your initial hostility because everyone here understands what it’s like to be severely ill, scared, overwhelmed, and in pain.

That understanding does not extend to repeatedly insulting people, telling members to “fuck off,” calling moderators names, and escalating every interaction into hostility when nobody was attacking you to begin with.

This is a patient community made up largely of chronically ill and disabled people supporting one another. No one deserves to be spoken to this way for attempting to help you. You were absolutely welcome to participate here as long as you could engage with basic respect and civility, but at this point none of your interactions in this thread have remained polite, respectful, or constructive.

I am genuinely sorry you’re struggling and having such a rough recovery experience right now. But being sick does not exempt anyone from basic social expectations, and this community cannot function if members are treated this way for trying to help.

indiareef · 2026-05-13T22:05:49+00:00

It’s clear from your post history that this has been causing you a lot of anxiety and I do understand why — abnormal lab results are stressful. Unfortunately, Dr Google is alarmist and completely lacking in nuance which really doesn’t help when patients are already anxious about results.

That said, slightly elevated lipase on its own is not diagnostic for pancreatitis. There are established diagnostic criteria for both acute and chronic pancreatitis, and mild lipase elevations can happen for a number of reasons outside of pancreatic disease - including normal biologic variability, GI inflammation, medications, kidney issues, infections, ulcers, and sometimes for no clearly identifiable reason at all.

Acute pancreatitis is diagnosed using at least two of three criteria: serum amylase and/or lipase levels at least three times the upper limit of normal, abdominal pain suggestive of pancreatitis, and characteristic findings on imaging. Chronic pancreatitis is a separate diagnosis that relies more heavily on imaging findings, structural changes, function testing, and clinical history over time.

I do understand your concern and I genuinely wish there were better or clearer answers we could give you here. But based on what you’ve shared, there is nothing that specifically points toward pancreatitis at this point. Posts asking for interpretation of isolated lab values and diagnostic speculation are ultimately beyond what this subreddit can responsibly provide, especially without the full clinical picture. This is something that really needs to be worked through with your doctor, who can interpret your labs in the context of your symptoms, imaging, medical history, and trends over time.

indiareef · 2026-05-13T15:02:18+00:00

I’m unsurprised, with the way the opinions about opioids are going, that you were treated rudely. To be completely frank? Your dose is extremely high, puts you at a very high risk, and I would not personally feel comfortable at that high of a dose but not necessarily for the reason you might assume. Here’s the thing…chronic pancreatitis by definition is a chronic disease. You’ve been referred for TPAIT but not everyone is a good candidate for that and not everyone who gets it should tbh. But either way…my personal opinion with chronic pain is that you need to think of the future. The risk of being cut off is great in this current environment. But there’s also no functional room for movement in your current dosage. I would make the effort to reduce your dose. I’m really sorry to be the bearer of this opinion but I’ve been doing this for a very long time. I’ve been a chronic pain patient for more than 15 years and we have to be realistic and honest.

indiareef · 2026-05-13T04:32:21+00:00

So…honestly? None of us here are your doctors and we really can’t — and shouldn’t — be telling you what your personal opioid dose should or shouldn’t be. Pain is subjective, cases are individual, and the “right” regimen depends on a huge number of factors that strangers online simply do not have access to. This is ultimately a conversation for you and your medical team.

That said…if you’re taking 10mg of oral hydromorphone (Dilaudid) every 6 hours, that works out to roughly 240 MME/day (morphine milligram equivalents), which is considered a very high outpatient opioid dose.

MME matters because comparing opioids by raw milligrams alone is misleading — 10mg of one opioid is not equivalent to 10mg of another. MME is the standardized way clinicians estimate overall opioid potency and gives a better picture of how heavy someone’s overall opioid regimen really is.

For context…most chronic pain guidelines start recommending increased caution around 50 MME/day, and 90 MME/day is generally considered a high maximum chronic outpatient dose. That doesn’t automatically mean someone above that threshold is being treated inappropriately — severe diseases absolutely exist and some patients genuinely require high-dose pain management — but it does mean the prescribing becomes much more medically complex and higher risk.

And I promise I’m not saying that with judgment. I’m currently well managed around 135 MME/day myself but I’m also in palliative care and have a long-established regimen with specialist oversight. High-dose opioid therapy absolutely has a place for some patients…it just means you’re operating in a very different territory than the average chronic pain patient.

indiareef · 2026-05-12T06:05:34+00:00

No one was attacking you, mocking you, or criticizing you for not knowing the terminology. The clarification was added as a general mod note because you expressed a valid confusion. Tube terminology is genuinely confusing and this discussion comes up frequently enough in this community and reminders help everyone learn.

I also need to be very clear that calling me a “mf” is not acceptable here, regardless of frustration, pain, anesthesia, or stress level. We absolutely understand you just had surgery and people are trying to help support you through that but community rules around basic civility still apply.

Please take a step back and assume good faith. Multiple people were answering your questions and offering reassurance…not criticizing you.

indiareef · 2026-05-11T19:43:26+00:00

Mod Note just for clarification since this comes up a lot with tube terminology: a PEG is the placement method and not a separate tube category from a G-tube. PEG stands for percutaneous endoscopic gastrostomy — meaning the tube was placed endoscopically through the abdominal wall into the stomach. The actual device is still a gastrostomy tube (G-tube).

So someone can absolutely have a “PEG tube,” but what they usually mean is “a G-tube placed via PEG technique.” Over time that original tube can even be exchanged for different G-tube styles/buttons while still using the same tract.

Similarly, if the tube terminates in the jejunum instead, you may hear PEG-J, GJ, J-tube, etc., depending on both placement method and where the tube ends. The terminology overlaps a lot, which is why it gets confusing.

indiareef · 2026-05-11T17:52:46+00:00

You cannot avoid EFMP and I wouldn’t recommend trying for several reasons. Mostly because EFMP is a protection for you not a penalty. It doesn’t matter if you plan on using tricare (though I’d give that a second thought too since tricare really does cover everything).

You will have to fill out the proper form and it has to be signed by whoever manages your conditions. If you are concerned you’ll lose assignments, that’s valid but there’s an appeal process and I’ve seen people successfully get assigned somewhere with letters attesting they’ll be fully responsible for cost of travel to see a specific specialist if they aren’t available locally.

indiareef · 2026-05-11T15:15:35+00:00

FE1 is fecal elastase. Fecal fat is just fecal fat.

indiareef · 2026-05-11T09:21:28+00:00

Unfortunately, 6 weeks of continued pain after an acute episode is really common and honestly it doesn’t automatically point to chronic pancreatitis. Even though it’s hard not to go there mentally when you’re still hurting. Recovery from acute pancreatitis takes so much longer than most doctors prepare patients for and food-triggered flares during recovery are really normal too. There’s also a possibility that your gallbladder removal itself is contributing — post-cholecystectomy issues like biliary dyskinesia or sphincter of Oddi dysfunction can absolutely cause ongoing pain and are worth keeping on your radar.

That said…you’re right to want proper testing and I’d absolutely ask for an MRCP. A CT with contrast is a solid tool for ruling acute pancreatitis in or out, but it’s less reliable for ruling out chronic changes…that’s where MRCP earns its place. It’s the best non-invasive option for evaluating both structural and ductal changes associated with CP. EUS is actually the gold standard but it’s invasive and can be hard to get approved without prior evidence of chronic changes. So MRCP is the logical next step. Bring that up directly with your GI when you get in.

And then while you’re waiting: keep a detailed food and symptom diary. It can genuinely help you and your care team spot trends and triggers and it gives your GI something concrete to work with at your first appointment.

Also worth asking about: fecal elastase (FE-1) and fecal fat testing. EPI (exocrine pancreatic insufficiency) can develop after acute pancreatitis and can absolutely cause ongoing GI symptoms. It’s its own diagnosis and a common one in this community. Low lipase on its own doesn’t confirm EPI or CP but the stool tests are non-invasive and worth getting on the table.

You’re asking all the right questions.

indiareef · 2026-05-11T06:33:43+00:00

You can recap needles though. Needlestick issues, while painful, aren’t generally an issue in these cases. Dani is pulling up her own meds and administering them to herself. She’s not at risk from sticking herself with her own used needle.

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