5 Things I Wish Someone Had Told Me When I Was Diagnosed with Crohn's Disease

When my consultant first said those words - "It won't kill you. But... there may be times when you wish it had" - I didn't know whether to laugh, cry, or run for the hills.

That was 37 years ago. Since then, I've survived multiple surgeries, countless flares, embarrassing moments I'd rather forget, and more hospital appointments than I can count.

Looking back, there are five things I desperately wish someone had told me at the start. Not the medical textbook explanations - the absolute, lived-experience truths that actually matter when you're trying to build a life around this disease.

1. "Normal" Is Gone Forever - And That's Actually Okay

The most brutal truth to swallow: you're not going back to how things were before diagnosis.

Your pre-Crohn's life - the spontaneous plans, the carefree eating, the reliable energy levels, the body you could take for granted - that's done. It feels brutal to say it so bluntly, but denial wastes precious time and energy.

What I wish I'd known:

You're not losing your life. You're building a different life. One that requires more planning, more self-awareness, and more flexibility. But also one that can still include joy, achievement, relationships, and meaning.

The sooner you stop mourning your old "normal" and start creating your new one, the sooner you'll find your footing.

Practical steps:

• Grieve the change. Give yourself permission to be angry, sad, and frustrated. This is a genuine loss.

• Redefine your priorities. What truly matters when energy is limited and health is uncertain?

• Build in flexibility. Make backup plans your default. Always have Plan B (and C).

• Find your new baseline. What does "good" look like now? It won't match your pre-diagnosis good, and that's fine.

The paradox: accepting that things have changed permanently is what allows you to move forward effectively.

2. Nobody Truly Understands - Except Other People with Crohn's

Your family will try. Your friends will mean well. Your colleagues will nod sympathetically.

But unless they're living with inflammatory bowel disease themselves, they genuinely cannot understand what it's like to:

• Plan every outing around toilet locations

• Look perfectly fine whilst feeling dreadful

• Cancel plans for the third time this month

• Explain why "healthy" salads trigger symptoms

• Live with pain that never entirely goes away

• Exist in a state of permanent uncertainty

What I wish I'd known:

This isn't their fault, and it's not your responsibility to make them understand completely. What matters is whether they're willing to adapt, accommodate, and support you - even when they don't fully grasp what you're experiencing.

The game-changer:

Finding your tribe. Other Crohn's patients get it without explanation. Online communities, support groups, and hospital waiting room conversations—these connections are invaluable. They provide a sense of understanding and support that can't be found elsewhere. Knowing that you're not alone in this journey can be a source of comfort and strength.

Where to find your people:

• Crohn's & Colitis UK local support groups

• Online forums: HealthUnlocked, Reddit's r/CrohnsDisease

• Facebook groups: Search "Crohn's Disease Support UK"

• Your hospital's IBD clinic - ask about patient networks

You'll find more relief in five minutes talking to someone who truly understands than in hours trying to explain yourself to well-meaning people who don't.

3. Food Becomes Complicated - And That's Uniquely Personal

Before Crohn's, I thought I understood healthy eating. Vegetables, whole grains, high-fibre foods - all the standard NHS guidance.

Then I discovered that those "healthy" foods were destroying my gut.

What I wish I'd known:

There's no universal Crohn's diet. What devastates one person's digestive system might be excellent for another. You'll need to become a detective, tracking your own triggers and tolerances.

The confusing reality:

• Raw vegetables can be agony during flares

• "Healthy" high-fibre foods may worsen symptoms

• Simple carbs (white bread, white rice) often become safer than wholegrains

• Your trigger foods won't match anyone else's exactly

My personal villains:

• Leeks (intestinal warfare)

• Cherry tomatoes (pass through completely intact, remaining intact throughout the journey)

• Anything with self-raising flour (the raising agents produce gas)

• Real ale (continues fermenting in your gut)

Your list will be different. And that's the point.

What actually helps:

Keep a food diary:

• Note everything you eat

• Record symptoms (timing, severity)

• Identify patterns over weeks

• Share findings with your dietitian

Start simple during flares:

• Well-cooked white rice

• Peeled, cooked potatoes

• Plain chicken or white fish

• Ripe bananas

• White toast

Reintroduce foods gradually:

• One new food every 2-3 days

• Small portions first

• Note preparation method (raw vs. cooked matters enormously)

Ignore the internet's "miracle diets":

If it promises to cure Crohn's, it's nonsense. No diet cures Crohn's. But the proper diet for you can significantly reduce symptoms and improve the quality of life. Understanding your body's unique triggers and tolerances can empower you to make dietary choices that can positively impact your health and well-being.

4. Medical Professionals Are Guides, Not Gods

Doctors know medicine. They understand pathology, medications, and surgical techniques.

But they don't know your body better than you do. And they certainly don't know what it's like to live inside your experience.

What I wish I'd known:

You're allowed to question, challenge, and seek second opinions. You're allowed to refuse treatments that don't feel right. You're allowed to advocate for yourself when something isn't working.

The partnership approach:

Your consultant brings: Medical expertise, treatment knowledge, and access to tests and procedures.

You bring: Lived experience of your body, quality of life priorities, and practical constraints.

Together, you create: A treatment plan that balances medical efficacy with personal sustainability.

When to push back:

• Your symptoms aren't being taken seriously

• Treatment side effects are intolerable

• Your quality of life concerns are dismissed

• You're not given options or explanations

• Something feels genuinely wrong, and you're being told it's "just stress"

Trust your gut (ironically, the very organ causing problems). If something feels off, if a treatment isn't working, if you're not being heard—speak up. And if necessary, find a different consultant.

5. It's Not Just a Physical Disease - The Mental Toll Is Real and Valid

Crohn's disease affects your gut. But it impacts your entire existence.

What I wish I'd known:

The psychological impact of chronic illness isn't weakness. It's a normal, expected response to living with pain, uncertainty, and limitation. Depression and anxiety in Crohn's patients aren't character flaws - they're common complications of the disease itself.

The mental health reality:

You're dealing with:

• Chronic pain and fatigue

• Unpredictable symptoms

• Loss of spontaneity and control

• Social isolation

• Changed body image (especially post-surgery)

• Financial stress from medical costs and work limitations

• Relationship strain

• Existential questions about purpose and identity

That's a lot. More than anyone should have to carry alone.

Warning signs you need support:

• Persistent low mood lasting more than two weeks

• Loss of interest in things you used to enjoy

• Suicidal thoughts (seek immediate help - ring 999 or Samaritans on 116 123)

• Panic attacks or constant anxiety

• Inability to function in daily life

• Self-destructive behaviours

Getting help isn't optional:

NHS options:

• Ask your GP for a referral to IAPT (Improving Access to Psychological Therapies)

• Some hospitals have psychology services for chronic illness patients

• Self-refer in many areas (search "[your area] IAPT self-referral")

What helps:

• Therapy specifically for chronic illness

• Support groups with others who understand

• Honest conversations with trusted people

• Medication if needed (antidepressants aren't a defeat)

• Mindfulness and stress reduction techniques

The physical and mental aspects of Crohn's are inseparable. Treating both isn't a luxury—it's a necessity.

The Bigger Picture: What All Five Truths Mean

These five realities - the permanence of change, the isolation of invisible illness, the complexity of food, the need for self-advocacy, and the mental health toll - might sound overwhelming.

They are overwhelming. Living with Crohn's is genuinely complicated.

But here's what 37 years have taught me: You adapt. Not quickly, not easily, but eventually, you find your rhythm. You learn what works for your body. You build a support network. You develop resilience you never knew you had.

Moving Forward

If you're newly diagnosed, you're probably scared. That's normal. If you're years into this journey and still struggling, that's also normal.

Crohn's is unpredictable, frustrating, and life-altering. But it doesn't have to be life-ending.

The five truths I wish I'd known earlier would have saved me years of confusion, false hope, and unnecessary struggle. I'm sharing them now in the hope they'll help you find your footing faster than I did.

You're not alone in this. Millions of people worldwide are navigating similar challenges. Connect with them. Learn from them. Please support them.

And remember: Crohn's is something you have, not something you are.

What would you add to this list? What do you wish someone had told you at diagnosis? Share in the comments.

Related Resources:

• Crohn's & Colitis UK: www.crohnsandcolitis.org.uk

• NHS Crohn's Disease Information: www.nhs.uk/conditions/crohns-disease/

• HealthUnlocked Crohn's Community: www.healthunlocked.com