Your Guide to Appointments

Health appointments can be daunting when you have Crohn’s or Colitis – no matter how many you’ve attended before.

- What do you want to get out of the appointment?
- What should you ask?
- How can you make sure you’re being listened to?
- What will your doctor or nurse want to know?

There’s a lot to think about.

But you’re not on your own.

This information will help you get the most out of your time with health professionals, and focus on what matters to you. Download My Appointments Journal to help you take note of how you’re feeling in between appointments, and keep everything neatly in one place. You find it easier to print just the journal page

Let us know your experiences using My Appointments Journal - email us at evidence@crohnsandcolitis.org.uk for the chance to share your experiences with the Crohn's and Colitis community.

Making the most of your appointment

Tools to help


Who you'll see

Not everyone’s IBD care teams look the same - but whoever you see, they’re all working to help keep you as healthy as they can.

Here are some of the health professionals and how can they help:

  • Your GP – can provide blood tests, faecal calprotectin tests, and prescriptions. They organise your referrals and take a holistic approach to your health.
  • IBD Clinical Nurse Specialist – will facilitate communication with the IBD team to enabling shared decision-making, support your care plan, manage medicines and offer practical and emotional support.
  • Consultant Gastroenterologist – a named gastroenterologist should lead your care and be responsible for the management of your condition.

Remember that there may be another health professional who can help you reach a specific goal. You could ask if there’s anyone who can support you with diet or nutrition, looking after your mental health or alternative approaches to living with the condition.

If you want to, you can ask for a second opinion. Use our interactive map to search for local hospitals who have specialist services for IBD.

We've helped create guidelines on what quality care should look like at every point of a patient’s journey – from first symptoms, to diagnosis, treatment, and ongoing care. These are the IBD Standards.

Keep a note of your team: 


About you

Understanding you

Your triggers
It can be helpful to note down things that trigger symptoms for you. Maybe it’s stress, certain foods - making notes will help you understand more about what you should (if you can!) avoid.

What helps you in a flare?
Make a note of tried and tested ways you can feel better. Have a plan of action that you’ve developed with your doctor or IBD nurse around what to do in a flare. Does your IBD service have a flare card? See our information for tips on what to do if you're having a flare

Your goals
Your health professionals probably won’t know what your priorities are. So setting goals for what you want out of your treatment is really useful for staying focussed.

What’s your normal?
Let your health professional know what‘s usual for you - it’s easy to get used to living with symptoms that you shouldn’t.

What matters to you

Crohn’s and Colitis affect more than just guts. Think about what's bothering you and let your health professionals know.

My consultant asked me for a goal and I said it was to stand in a field with no toilets around. For a long time toilets were like a security blanket - I always had to know where the nearest one was.

So, the idea of going to Peru and doing the Inca trail - it felt like an impossible journey. But that’s where we’ve just gone on holiday. I’m not worried at all now

Paul
Living with Ulcerative Colitis

 


 


Tips on talking 

Communication is key to a successful appointment, but when you’re under pressure it’s not always easy. Here you’ll find top tips on what to say, and how to say it. If you don’t understand something, say so!

Don’t be afraid to ask your doctor to explain. Try phrases like:

Can you help me understand...?

So, you mean...

...and repeat back what you’ve understood.

Ask health professional to draw a diagram to help show things like:

  • Where your Crohn’s or Colitis is most active.
  • What will happen in a surgical procedure.
  • How and when to take your medicines, such as the best way to insert an enema.

It takes guts to be assertive with your doctor. But being clear about your needs is the best way to get the most out of your time, so don’t be afraid to ask questions about what matters to you.

Your feelings and symptoms are valid. Health professionals see a variety of people, some of whom are very ill. But don’t let what you’re going through be dismissed. Needing the toilet 5 times a day may seem less serious in comparison to others, but it doesn’t mean it’s not having a huge impact on your life.

Don't worry about looking bad - if you've been really busy, forgotten to take your medicine, haven't been tracking your symptoms, or cancelled your dietician appointment, make sure you're open about it. 

Jaya
Living with Ulcerative Colitis

There’s no right or wrong way to say how you feel, or describe symptoms. Here are some words and phrases that might be helpful along with some handy tools.

Attention grabbing phrases

Don’t be afraid to use emotive language to say how bad things are for you.

I’m worried about...
I can’t…
I’m struggling to...
I’m not coping with...
My quality of life has got worse
I’m not happy with how my treatment is going

Communicating your symptoms 

Pain:

  • Aching
  • Biting
  • Blunt 
  • Burning


Click to see a larger image of the pain scale
 

Fatigue:

  • Brain fog
  • A big black hole
  • Being woozy or fuzzy
  • Heaviness
  • Shattered


Click to see a larger image of the fatigue scale
 

Describing your poo:

  • Explosive diarrhoea
  • Fear of not getting to the loo in time
  • Having an accident
  • Gas, flatulence or wind
  • Poo like: toothpaste / a cowpat / dropping

 
Click to see a larger image of the poo chart


Questions to ask

Not sure what to ask at your appointment? Not to worry - we’ve put together a useful list of questions that people with Crohn’s or Colitis often want to know.

Pick the ones that are most relevant to you. You don’t need to ask everything at once – if you think of something later, you could send an email or call. We have a wealth of information about Crohn's and Colitis which can also help answer general questions.

Your condition 

  • Why do you think this is Crohn’s/Colitis?
  • Which parts of my bowel are affected?
  • How does that affect how the disease is treated?
  • Are there any reasons why you think I may have a more difficult time in the future?
  • Are there any things I can do to reduce my risks of flaring?
  • How do I know if I’m in remission?
  • How do I know if I’m having a flare?
  • Might my children also develop the condition?

Support

  • Are there any support organisations in my local area?
  • Could I have written information?
  • Are there any patient education sessions?

Your lifestyle

  • Would it help my condition if I made some changes to my lifestyle, such as giving up smoking or changing my diet?
  • Will I be able to work full time?

Medicines

  • Why have you decided to offer me this medicine?
  • What are the pros and cons of this treatment?
  • How will it help me?
  • What effect will it have on my symptoms and everyday life?
  • How long will it take to have an effect?
  • Are there any alternative treatment options?
  • Are there any potential side effects with this medicine?
  • What should I do if I get any side effects?
  • Are there any long-term effects of having this treatment?
  • Why do I need regular blood tests when taking this medicine?
  • How might steroid treatment affect my bones?

Possible side effects of treatment

  • What should I do if I get a specific side effect?
  • What monitoring do I need to look for side effects?
  • Are there any long-term effects of taking this treatment?

Surgery

  • How do you think having surgery will help me?
  • What are the risks associated with this surgery?
  • What will the operation involve?
  • What improvements can I expect?
  • Please give me more information about having a stoma.
  • How long will I need to stay in hospital after the operation?
  • Could I talk to someone who has had the operation?
  • Is there any information on the surgeon who will be doing the operation?
  • How long will it be before I can get back to my usual activities?
  • Will surgery affect my sex life? Will it affect future fertility or how a baby might be delivered?


Before your appointment 

Make a list of questions, make a list of symptoms and frequency and take pictures if needed!

Tom
Living with Crohn's
  • What are your goals for the appointment? 
  • What are your main worries?
  • Think about any symptoms and how you can describe them.

Keep notes so you're prepared. You can use the pages in My Appointments Journal.

 

 

 

 

 



After your appointment 

Before you leave your appointment, check that you know what will happen next. These questions can help clear up any uncertainty.

  • What should I do if I think I’m having a flare?
  • What should I do if I’m having an urgent problem?
  • How long will it take for new medication to kick in and are there any side effects to look out for?
  • When will I get my test results?
  • How long will it take for my referral to come through?
  • Where can I find out more information?
  • Who can I contact for help? What are their full contact details?

Keep a note of how it went, what your health professional has agreed to do and what you've agreed to. My Appointment Journal can help with this. 


Tools for young people

If you'll soon be transitioning from paediatric to adult care for your Crohn's or Colitis, our Transition guide has all the information you need to help you to understand what might happen and how you can prepare for appointments with your new team.

The charity CICRA have a symptom tracker and appointment planner for young people with Crohn's or Colitis to help you work with your IBD team. 


Have you used My Appointments Journal at an appointment for your Crohn's or Colitis? We'd love to hear how it went! Email us at evidence@crohnsandcolitis.org.uk and we may share your experience online.

Crohn’s & Colitis UK received funding from Pfizer and AbbVie, who had no input into the content or design of this information.