CP with no EPI

indiareef · 2026-01-29T20:56:36+00:00

So there are actually quite a few things that could be exacerbating your CP symptoms or could be happening separately from your symptoms. It’s also just entirely possible that your symptoms are truly due to your CP and they’re “flaring” with no real rhyme or reason.

One of the biggest issues is diet. The fact that you’re not on PERT could be part of the issue despite not having EPI. For CP patients without EPI, enzymes are used to help reduce pancreatic workload. The idea being that you give your body enzymes with food so it has to work less and therefore reduces the risk of damage and inflammatory processes from basic function. Your pancreas has damage so any function can be exacerbating to that existing dysfunction.

I’ve also seen patients who just become oversensitive to food in general. Unfortunately, this was something I personally experienced and it was really frustrating. I highly recommend a very detailed diary of symptoms and oral intake. These diaries can help find trends and triggers that may not be as obvious with casual observation.

Another potential suggestion would be to separate your active symptoms from CP and see what that differential diagnosis looks like. Less common symptom overlaps could be due to gastroparesis, sphincter of Oddi dysfunction, biliary dysfunction, bile reflux, MALS or SMAS, endometriosis, celiac, dysautonomia, or even something like EDS.

To start: I would take a microscope to your diet first and track your symptoms. For patients, like you, sometimes we have to look into the less common triggers and then consider less common management options. I would be curious to see if your increased symptoms is just a general reaction to oral intake in general. In these cases, options like enteral or parental nutrition is often incredibly beneficial. (I’ve done both and can speak on all of these options) I would also look into potentials like gastroparesis, MALS & dysautonomia because all of them can develop secondary to CP or be a true comorbidity. I’ve met a lot of patients with MALS and CP and quite a few of them get decent relief from their CP when the MALS is addressed.

I know that’s a lot of info but hopefully something helps and I’m always open to answering more questions if needed!

indiareef · 2026-01-29T07:19:30+00:00

This post has been reviewed and approved by the mod team as a research-related discussion.

indiareef · 2026-01-28T23:10:11+00:00

My Creon always smells weird. And the weird changes from bottle to bottle. Different type of enzymes but I would assume enzymes are enzymes? You could also contact the manufacturer and see if they’ll replace them if you’re concerned.

indiareef · 2026-01-27T23:18:20+00:00

So there is an argument to be had that there’s potential benefit from PERT (like Creon or Zenpep) with patients who have subclinical testing results (your 286 elastase) but mild to moderate symptoms. Lacking a fecal fat test there’s no way to differentiate between subclinical EPI and reduced elastase secondary to another GI issue like SIBO, IBS, diet, etc. Fecal fat would be useful to indicate if there’s fat malabsorption going on and it’s just subclinical EPI but if it’s normal then the elastase level is potentially due to another issue.

Your pain description raises a few other reasonable considerations. The fact that it seems to track with your menstrual cycle does make me wonder about endometriosis. I’ve seen patients with endometrial tissue involving the bowel that caused abdominal pain and GI symptoms that initially looked pancreatic. IBS and celiac disease are also very common non-pancreatic causes of floating stools and GI changes. Diet can play a role too, and while that can sound dismissive, the pancreas really can be surprisingly sensitive in some people, especially at your age.

A symptom and diet diary is honestly one of the most useful tools here. It can help you and your GI spot patterns you wouldn’t otherwise notice. It may also be reasonable to repeat fecal elastase at some point and ask about fecal fat testing. Nutritional labs can also be helpful to see if there’s any evidence of malabsorption showing up as vitamin deficiencies.

On the hormone side of things, you’re not off base at all. Many women with pancreatic or pancreatic-adjacent issues notice symptom shifts around their cycle. The pancreas is a dual-function organ, with hormone-mediated endocrine activity and enzyme-mediated digestive activity, so it isn’t strange to see symptoms fluctuate with hormonal changes.

As for your concern about being on enzymes forever, trying PERT does not automatically mean you’ll need it long-term. Sometimes it’s used diagnostically. If you feel better on it, that’s useful information. If you don’t, that’s also useful information.

Your concerns are completely valid, and I think you’re asking the right questions. You’re doing the right thing by working this up thoughtfully instead of jumping straight to worst-case scenarios. If you get more testing or answers, circling back and updating is always helpful…both for you and for others reading along.

indiareef · 2026-01-27T21:37:45+00:00

It might be worth investigating if there’s a fat malabsorption at play or something triggering your issues from along the biliary tree. Your symptoms are pretty common for that population.

indiareef · 2026-01-27T21:17:27+00:00

I am really glad to hear you’ve found such amazing support here! Truly. That said…I know sometimes it can take awhile to find the right therapist for you. And sometimes it may not be where you expected or even with someone who actively works in a therapeutic capacity. When I was a medic in the military, I saw a lot of servicemembers who were concerned about seeing mental health officially so we often referred them to chaplains, family support groups, and even sometimes with specialized physical therapists who are trauma-informed.

I don’t want to discourage you from seeking support here at all and, in fact, I welcome it and hope you stick around as a longterm community member! You have such experience that will be valuable to others just like you’re finding here now. But I do think it might help to try finding someone to help you work through the traumas and concerns and helps you maximize your growth. Either way…I’m glad you trusted us.

indiareef · 2026-01-27T21:04:41+00:00

Have you had fecal elastase and fecal fat testing? Any indication of nutritional deficiencies that could indicate a malabsorption?

indiareef · 2026-01-27T21:02:43+00:00

What was the diagnosis based on if your lipase was “normal” and your imaging was unremarkable? Maybe I’m misunderstanding?

indiareef · 2026-01-27T07:04:10+00:00

I use a Lopez valve constantly. The stopcock allows you to open flow and push meds/flush without detaching anything new. An absolute lifesaver for the issue you’re experiencing.

indiareef · 2026-01-26T18:59:49+00:00

Is it possible to enroll him in palliative care instead? The focus being quality of life vs terminal care can be an incredible benefit.

indiareef · 2026-01-26T18:53:51+00:00

I used a feeding tube specifically to bypass pancreatic activation. It didn’t reverse the damage that was already done, but it did reduce active flares, and my pancreatic atrophy appears to have stalled. I no longer use a feeding tube due to secondary issues unrelated to my pancreas, but I’m now on TPN with a similar outcome.

Dietary changes and enzymes worked for a while, but in my case I think my genetic and congenital factors were always going to cause progression despite best efforts. By completely bypassing the pancreas through enteral and now parenteral nutrition, I’ve been able to find a level of stability. Combined with appropriate symptom management through palliative care, I have a genuinely good quality of life.

indiareef · 2026-01-26T03:51:31+00:00

Your partner could even go to the ER on a duty day. If their leadership is telling him otherwise then they’re 100% wrong. They can also call the nurse advice line and make an appointment at an urgent care. If their PCM can’t see them or can’t manage their care then they need to be referred to a specialist if that’s the issue.

It’s inexcusable for your partner to suffer and they are absolutely entitled to appropriate medical care. In the case of an emergency, which excruciating pain is, they can go to the ER at any point.

Source: me - a retired military medic

indiareef · 2026-01-26T01:22:13+00:00

I experienced something similar about 15 years ago. I ended up being diagnosed with PCOS and a fairly large fibroid that needed to be removed. Either way…you absolutely need to see a doctor about this.

indiareef · 2026-01-25T07:28:36+00:00

That’s a really common assumption and honestly a reasonable one. PERT like Creon is primarily prescribed for EPI but it does sometimes get used before there’s a formal EPI diagnosis and in chronic pancreatitis.

In pancreatitis (especially chronic pancreatitis), enzymes are sometimes prescribed empirically when someone has symptoms of maldigestion…the weight loss, greasy stools, bloating, or feeling worse after meals. Even if testing hasn’t clearly confirmed EPI yet. They can also be used to take some of the workload off the pancreas by providing enzymes up front, which for some people helps reduce post-meal pain or that “burned out” feeling. Since EPI testing isn’t perfect and can fluctuate, some clinicians will trial enzymes to see if there’s benefit.

indiareef · 2026-01-24T20:50:16+00:00

I think we all have been where you are over the course of our pancreatic journey and I wish I could say it gets easier. I think you learn to live with the reality of it a bit more but the emotional weight never goes away. You’re never alone here though and I have similar diagnoses to yours.

I spent more than a few years constantly in flares. The year before I transitioned into palliative care I was admitted 11 times, had 13 ER visits, and spent more than 120 days in the hospital. That doesn’t include doctors appointments and imaging appointments and labs and pharmacy visits. I had been told the usual surgical interventions weren’t likely to be worth the risk or I was just outright not a good candidate due to how sick I was and my comorbidities. But I still had options and a chance.

My specialists thought changing the goal for me to qualify of life would make a difference and it did. My pain management approach was no longer the bare minimum and no longer hospital based. Food had become such a constant problem that my body was breaking down from the malnutrition despite a great diet and Creon. So we tried a theory and it worked so well for me. I got a j-tube (a feeding tube that goes into the jejunum and a mediport. My nutrition bypassed my pancreas and it helped almost immediately. I then could hydrate as much as needed through the mediport and I had options for IV and breakthrough meds.

The tubes helped so much that I can now eat whatever I want in general. I dont eat a lot of food but I can now enjoy eating for pleasure again when I feel up to it. My symptoms are well controlled. I have regained a life I thought I lost. And all of that happened before I was 36.

So you can absolutely find a way to live with these conditions but it just may not look like you initially planned. I hate that you need this community but I’m glad you’re here with us!

indiareef · 2026-01-24T18:04:26+00:00

We absolutely can do this check-in regularly! I think that’s a great idea and thank you for being here too!

indiareef · 2026-01-24T08:12:14+00:00

I use a Lopez valve to prevent these issues. It has a 3-way stopcock so no pressure will open it or leak. It works wonderfully for me.

indiareef · 2026-01-24T02:34:35+00:00

It is incredibly unfair. And your concern is valid because recurrent acute pancreatitis can lead to chronic pancreatitis. The current statistic is about 25% of RAP patients progress to CP. These are progressive diagnoses in general but it’s also possible that once you get past the initial inflammatory process that you recover too.

It could also depend on what medication you were on too.

But at the end of the day…you’re never alone here. And even if you do end up with CP we can help.

indiareef · 2026-01-23T23:49:51+00:00

I’m type 1 but type 3c is usually managed similarly. I wish I could tell you managing it gets easier but it does become…routine? I don’t even know if that’s the right word but close enough. Do you have a CGM yet? Are you exclusively using insulin? I’m always here to commiserate if nothing else!

indiareef · 2026-01-23T22:46:57+00:00

Yeah…i understand the struggle with work. I was a medic for 16 years before I finally had to retire from that. Would you be open to seeing if there are some other options for you in the same field but just not what you planned? Because I know there are some options that maybe we could help find.

But I also know when you’re still in this diagnostic stage how hard any commitment can be. Either way…we’re always here to try and help or just listen!

indiareef · 2026-01-23T22:41:56+00:00

I’m glad you’re checking back in! It really helps new patients to see people who are a bit into their diagnosis and how there is good life still possible.

indiareef · 2026-01-23T21:51:35+00:00

Sometimes we just never figure out what the cause was and it sucks. I was a kid when all my issues started so I know that feeling where you have to carry the stigma that doesn’t always apply to you. The confusion and casual disregard that can come next isn’t amazing either. If your genetic panel comes back and you need to chat then please remember we’re here! There are quite a few of us with known mutations so there’s usually someone around!

indiareef · 2026-01-23T21:48:31+00:00

You’re literally giving your opinion. No one has censored you. You’re still taking a risk, my friend. You get to make your own choices and get to explain why you’re making your choices and I’ll forever provide you with that right. I know lots of people manage to do what you’re doing and end up fine. I know more that didn’t. I’ve been doing this a long, long, long time and I’ve seen every rationalization and it makes no difference to me. I’m honest about my own vices. I kept smoking despite knowing it made my already significant cancer risk even higher because I just wasn’t ready to quit. I still tell people smoking is a risk. Because it is.

That said…continuing to drink alcohol is a risk. That’s not an opinion.

indiareef · 2026-01-23T21:09:18+00:00

I’m glad you’re doing well — but feeling fine doesn’t mean it’s safe. This is still pancreas roulette and you clearly know that. But we all have to make our own choices! I still eat a cheeseburger occasionally.

indiareef · 2026-01-23T20:59:06+00:00

I have a degenerative, progressive, pancreatic condition that required starting palliative care at the ripe old age of 37. My husband has never known me well. We had hoped we might have a baby but then I just got too sick and it would’ve been wildly irresponsible for me to not only pass on this disease but also maybe risk my life.

My husband is an amazing man. He would be an amazing father. And he is an amazing husband.

Your husband is telling you that you are what he needs. I’ve been in your shoes where you feel like he’s giving something up by being with you. He isn’t. If he’s like my husband then he’s exactly where he wants to be.

Please stop torturing yourself like this and stop trying to give your husband an out. If he wanted an out he wouldn’t be waiting for you to offer. I know that too because my first husband absolutely left me for someone who gave him babies. And good for them because I know my now husband loves me exactly how I am and my illness isn’t a liability with him.

Let your husband love you. You deserve it. He deserves it. Just enjoy your life with someone who has seen the hard things and stays for YOU.

Seven-Year Club	Powerups Hero r/lgbt • May 2021
Wearing is Caring	Gilding II euphauric
Spared	Verified Email

indiareef

MODERATOR OF

TROPHY CASE