The Dual Diagnosis Diaries: 💜 When Remission Still Hurts

Dear Diary,

This entry is for Crohn’s Disease—the diagnosis that entered my life in 2003 and completely changed my understanding of pain, strength, food, bathrooms, fatigue, and what it truly means to listen to my body.

Crohn’s was my first autoimmune diagnosis. It introduced me to medical uncertainty, invisible symptoms, unpredictable flares, and the frustrating experience of looking “fine” while my body was staging a full rebellion behind the scenes.

More than twenty years later, Crohn’s is still teaching me something important:

Remission does not always mean relief.

Apparently, Crohn’s believes words should come with fine print.

💜 When the Tests Say “Better,” but the Body Still Hurts

People often think remission means everything returns to normal.

Objective testing may show that the inflammation is controlled. The disease may be quieter. Laboratory results may look better. The doctor may even say the words we have been waiting to hear:

“Your Crohn’s is in remission.”

Cue the confetti. Alert the media. Tell my digestive system it can stop acting like it has unresolved personal issues with me.

Unfortunately, it does not always work that way.

According to the Crohn’s & Colitis Foundation, up to half of people living with inflammatory bowel disease may experience chronic abdominal pain, including some whose disease is in remission.

That pain can interfere with daily activities, relationships, family life, work, sleep, eating, and the ability to enjoy the very life remission was supposed to return to us.

Remission may describe the activity of the disease, but it does not always describe the experience of the person living with it.

Sometimes the medical chart says remission while the body says, “Let’s not get carried away.”

🧠 When the Nervous System Remembers

One possible reason pain continues is something called visceral hypersensitivity.

After years of inflammation, the pain-signaling pathways connecting the gut and brain may become overly responsive. As a result, normal digestive functions—movement, pressure, gas, or stretching—may feel painful even when objective testing shows no active inflammation.

In other words, the inflammation may calm down while the nervous system remains on high alert.

The fire may be controlled, but the alarm system is still screaming, the sprinklers are still running, and somebody has already called the fire department twice.

And before anyone suggests that this means the pain is “all in our heads,” let me be perfectly clear:

The brain processes pain, but that does not make the pain imaginary.

It makes the pain neurological, biological, complicated, and very real.

Besides, if I were going to imagine something, I promise it would involve a beach, a frozen drink, and a digestive system that knows how to behave in public.

💊 A Problem Without a Simple Solution

One of the most frustrating realities of Crohn’s-related chronic pain is the lack of treatments designed specifically for it.

NSAIDs—including ibuprofen, aspirin, and naproxen—are generally discouraged for IBD-related pain because they can irritate or damage the gastrointestinal tract and may mimic or worsen IBD symptoms. Alternative approaches to pain management should always be discussed with a healthcare provider.

Opioids carry serious risks of their own and are rarely an ideal long-term solution.

That can leave patients trapped between living with pain and worrying that treating the pain might create another problem.

Because apparently Crohn’s enjoys making everything complicated.

There is no universal solution because Crohn’s pain does not come from one universal source. It may be related to inflammation, scar tissue, strictures, previous surgeries, nerve sensitivity, joint involvement, nutritional deficiencies, stress, or another condition entirely.

Persistent pain should never automatically be dismissed as “just Crohn’s.” New, severe, or changing pain deserves medical evaluation.

🔬 The Search for Better Answers

Researchers are examining why some people with inflammatory bowel disease develop chronic pain while others do not.

They are studying genetics, biomarkers, the gut microbiome, brain-gut communication, stress, diet, and compounds associated with nerve pain. They are also exploring non-opioid treatment possibilities and more personalized approaches to pain management.

That word—personalized—matters.

People living with Crohn’s are not interchangeable. Our symptoms, triggers, complications, treatment responses, and pain experiences are different.

One person’s safe food may be another person’s express ticket to the bathroom.

We do not need to be squeezed into one standard treatment box—especially when Crohn’s has already squeezed, twisted, cramped, and rearranged enough.

We need care that considers the whole person, not only the inflammation visible on a scan or the numbers printed on a laboratory report.

🦋 Crohn’s Was Here First

Before MuSK-positive Myasthenia Gravis entered my story, there was Crohn’s.

Crohn’s was the original uninvited guest—the one that arrived without asking, rearranged the furniture, took over the bathroom, and then decided to stay indefinitely.

Crohn’s taught me how quickly life can change. It taught me how to advocate for myself when symptoms were minimized and how to keep asking questions when the answers did not make sense.

It taught me that fatigue is not laziness, pain is not weakness, and needing accommodations does not mean I am incapable.

It also taught me that people can become experts at hiding what hurts.

We attend meetings while calculating the distance to the nearest bathroom. We smile while our stomachs twist. We make restaurant choices based on the menu, bathroom accessibility, and how quickly we can get home if the meal declares war.

We cancel plans because our bodies have made plans of their own. We learn which foods feel safe today, knowing they may betray us tomorrow.

Crohn’s does not believe in loyalty. Yesterday’s safe meal can become today’s personal attack.

And when remission finally comes, we may still carry pain, fear, exhaustion, dietary limitations, and memories of everything the disease has already taken us through.

💭 Reflection Corner

Remission is worth celebrating.

It represents progress, treatment working, inflammation decreasing, and the possibility of fewer complications. But celebrating remission should never require someone to pretend that every symptom disappeared with it.

A person can be grateful for remission and still be struggling.

A person can have controlled inflammation and still need support.

A person can look healthy and still be in pain.

A person can smile, laugh, work, travel, show up for others, and still know the exact location of every bathroom within a five-mile radius.

Both realities can exist at the same time.

If you are living with Crohn’s pain during remission, please know that your experience is valid. You are not ungrateful. You are not exaggerating. You are not failing at remission.

Remission is not a performance review, and you are not required to prove you are doing it correctly.

Your body’s story may simply be more complicated than a test result can explain.

Remission is a medical milestone—not a promise that every symptom, limitation, or fear has disappeared.

🎵 Music Playing in My Head While Writing This

“The Climb” — Miley Cyrus

Because Crohn’s has never been one finish line. It has been a collection of mountains, valleys, detours, bathroom breaks, treatment changes, and moments when simply continuing to climb was the victory.

Some days, the climb is inspirational.

Other days, I would prefer an elevator and a bathroom on every floor.

💬 Let’s Talk About It

If you live with Crohn’s Disease or another form of inflammatory bowel disease, have you continued experiencing pain even during remission?

Were your symptoms taken seriously, or did you feel pressured to accept that everything was fine because your inflammation was controlled?

And be honest: Have you ever mentally mapped every bathroom in a building before deciding whether you could relax?

Share your experience if you feel comfortable. Someone else may need the reminder that they are not alone—or the reassurance that emergency bathroom mapping is, in fact, a highly developed survival skill.

Thank you for reading, learning, laughing with me, and helping bring attention to the realities of living with Crohn’s Disease—including the realities that remain after the inflammation improves.

Please like, subscribe, and share The Dual Diagnosis Diaries to help support chronic illness education, advocacy, and awareness.

This entry is intended for education and awareness and should not replace individualized medical advice.

Founder • Author • Advocate • Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries 💜