For the first days after diagnosis

You don't have to have this figured out today.

A diagnosis of Crohn's or colitis brings a lot at once — new words, new appointments, a body that feels unfamiliar. Steady Grounds is a quiet place to start: one step, one question, one day at a time.

Start with today Questions to ask your team
"Bring a notebook to the first GI appointment."
"It's okay to ask them to slow down."
If you're reading this today

A few things worth knowing right now

Before anything else — some grounding, not homework.

This isn't your fault

You didn't cause Crohn's or colitis by something you ate, thought or did. IBD is a complex inflammatory condition involving the immune system, genetics, the gut and environmental factors. Stress doesn't appear to cause IBD, although it can sometimes worsen symptoms or contribute to flare-ups.

Symptoms can change over time

What you feel in week one isn't a preview of how this always goes. Flares and quiet stretches both happen.

You don't need every answer today

Diet, work, travel, family plans — those are month-two and month-six questions. Right now just needs the next appointment and a way to track how you feel.

A map, not a schedule

The early days, laid out

Everyone moves through this at a different pace. These are the four stretches most newly diagnosed people pass through, and what tends to help in each one.

First 24 hours

Let it land

  • Tell one person today, even just to say the words out loud.
  • Write down every term the doctor used — you can look them up later.
  • Rest counts as doing something.
  • Keep taking your prescribed IBD medicines as prescribed, unless your IBD team or another healthcare professional tells you otherwise.
First week

Get organised, gently

  • Keep a simple note of symptoms, bowel pattern, medicines, energy and anything that seems relevant — including food if you notice a pattern.
  • Make sure you know how and when your next follow-up will be arranged.
  • Ask your IBD team what changes in your symptoms should prompt you to contact them sooner.
First month

Build your team

  • Understand who does what — your IBD team will usually lead your specialist IBD care, while your GP remains an important part of your wider healthcare.
  • Learn your specific diagnosis: Crohn's disease, ulcerative colitis or IBD unclassified — and ask which part of your bowel is affected.
  • Start noticing changes and patterns in your symptoms, energy and daily routine.
First 3 months

Find your rhythm

  • Revisit questions about work, food and travel when you feel ready.
  • Look for one community — online or local — even if you just read at first.
  • Notice what's improving, what isn't, and anything that's changed — share this with your IBD team.
Bring these with you

Conversation prompts

Questions worth having ready — for your care team, for your own notes, and for the people close to you. Add your own as you think of them.

For your GI team

At the next appointment

  • What type of IBD do I have, and where is it active?
  • What does this medication do, and how will we know it's working?
  • What symptoms mean I should call before the next visit?
  • Is there a nurse line or portal for questions between appointments?
  • Who should I contact if I think I'm having a flare?
  • What symptoms should make me seek urgent help rather than wait for my next appointment?
For yourself

Journaling prompts

  • What felt hardest about today, and what actually helped?
  • What did I eat, and how did I feel a few hours later?
  • What's one thing I'm proud of managing this week?
  • What am I avoiding asking, and why?
For people who love you

Helping them understand

  • Here's what a flare actually feels like for me.
  • Here's what would help on a bad day — and what wouldn't.
  • I might cancel plans sometimes. It's not about you.
  • You can ask me how I'm doing — I'll tell you honestly.

When to ask for help

Contact your IBD team or GP if your symptoms are getting noticeably worse, you think you may be flaring, or you're struggling with medicines, eating or drinking.

Seek urgent medical advice if you have persistent vomiting, signs of dehydration or feel significantly unwell.

Go to A&E or call 999 if you have severe abdominal pain, continuous heavy rectal bleeding, a large amount of blood, or feel seriously unwell.

Getting organised

Building your care team

A short checklist for the first few weeks — nothing here needs to happen today.

Your IBD teamKnow how to contact your IBD team between appointments — often through an IBD nurse helpline, advice line or patient portal.
A GP who's in the loopA GP who has your diagnosis on record.
A record-keeping systemA notebook, notes app, or tracker — whatever you'll actually keep up with.
One trusted personSomeone who knows what's going on and can come to an appointment if needed.
A mental health contact, if it helpsA diagnosis is a lot to carry. Support for that is part of care, not separate from it.

On bad daysThis is a flare, not a failure. Flares can be treated — you don't have to manage one alone.

On good daysLet them be good, without waiting for the next bad one.

On uncertain daysNot knowing yet is normal. You're still learning your own patterns.

Take the next step whenever you're ready.

There's no timeline you're supposed to be keeping to.

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