Just been diagnosed with Crohn’s Disease? Start here.
You’re not dying, you’re not alone, and it does get more manageable. Here’s what one 40-year ‘Old Crohnie’ wishes somebody had told him on day one.
What actually is Crohn’s Disease?
In plain terms — the way Brian’s doctor first explained it to him: imagine your intestine is a garden hose. If part of that hose narrows or becomes inflamed, whatever’s trying to pass through slows down, backs up, and causes pain. That’s Crohn’s, in the simplest possible language.
Medically: Crohn’s Disease is a type of Inflammatory Bowel Disease (IBD) that causes inflammation of the digestive tract, which can lead to abdominal pain, diarrhoea, fatigue and weight loss. There’s no known cure, but treatment can bring about long-term remission — and many people with Crohn’s go on to live full, active lives.
- A lifelong condition — but a manageable one for most people
- Symptoms and severity vary hugely from person to person
- The exact cause is still unknown; genes, immune system and stress may all play a part
- Treatment has improved enormously in the last 20 years
Six things Brian wishes he’d known sooner
Learn to spot your own warning signs
Crohnies tend to be people-pleasers who push through pain rather than rest. Brian’s biggest lesson: your body will tell you when to stop — listen earlier, not after you land in hospital.
Interrupt your doctor — politely
Hospital rounds move fast and rarely explain things in plain English. Brian learned to stop the specialist and ask for a straight, jargon-free explanation of exactly what was happening and why.
Avoid untrained ‘keyboard warrior’ medical advice
The internet is full of confident strangers rubbishing medications that simply didn’t work for them personally. Trust your own medical team over forum certainty.
Protect yourself from negative energy
Constantly negative people — at work or at home — add stress you don’t need. Brian’s advice is blunt: avoid them, or get rid, wherever you realistically can.
Find your ‘Geraldine’
One person in Brian’s corner made the difference between coping and not. Let the people who love you actually help — don’t be too proud to accept it.
Take control of your mind, not just your body
Medication treats the body. Brian is candid that changing his own thinking — learning to ‘let it go’ — is what finally let his treatment work properly.
Practical support worth knowing about
Depending on where you live, options like these can buy you breathing room while you get well:
- Mortgage or loan payment breaks — talk to your bank early and honestly
- Government back-to-work or welfare bridge schemes in your country
- A good local GP who knows your full history and can advocate for you
- IBD patient communities and charities — you are not the only one going through this
Trusted places to learn more
For medical information, always start with your own care team, alongside established IBD charities such as the Crohn’s & Colitis Foundation, Crohn’s & Colitis UK, and the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA).
The book that started as one man’s survival guide
‘Diary of an Old Crohnie’ won’t replace your doctor — but it might be the first thing that makes you feel understood.