Help us improve our information
We need your help to improve our information to better support people with Crohn’s and Colitis. Fill in our short survey to let us know what we're doing well and how we can better meet your needs.
Last reviewed: May 2024
Next review date: May 2027
Appointments for Crohn’s or Colitis can sometimes feel overwhelming. It doesn’t matter whether it’s your first appointment, or if you’ve been attending appointments for years. This information can help you get the most out of your appointments. It will help you think about:
This guide is for anyone who wants to make the most of their appointments. We hope that it is helpful for you. This information focuses on hospital appointments. Our information on how to get a diagnosis can help support you with GP appointments. If you’re currently being diagnosed what's up with my gut may also be useful to you.
This resource brings together experience from people living with Crohn’s and Colitis, alongside information from healthcare professionals and our helpline team.
We need your help to improve our information to better support people with Crohn’s and Colitis. Fill in our short survey to let us know what we're doing well and how we can better meet your needs.
Before your appointment
On the day of your appointment
After your appointment
Some groups of people may face extra challenges in their appointments. Our information on transitioning to adult care has further information.
It takes guts to speak up for yourself. But being clear about your needs is the best way to get the most out of your appointments.
Your Inflammatory Bowel Disease (IBD) team may be made up of lots of different people. Everyone’s team will look different. It can be useful to keep a note of your team to remind you of who everyone is. Some of the people that may make up your IBD team include:
Your IBD team may include gastroenterology specialist registrars. Specialist registrars are doctors training in a certain specialty who are not yet consultants. Specialist registrars have been doctors for at least five years, if not a lot longer. Specialist registrars often work alongside consultants to see patients in clinic.
There may be other healthcare professionals who can help you reach a specific goal. This may include help with nutrition or mental health. Ask your IBD team about referrals to other specialists.
When it comes to your Crohn’s or Colitis journey, you’re the expert. After all, you’re the only person who has been there every step of the way. A lot may have happened during your Crohn’s or Colitis journey. Particularly if you were diagnosed a long time ago. It can be useful for you to have a summary of the key points in your diagnosis and treatment. You can use this summary at your appointments. This will help healthcare professionals understand everything that has happened. This is particularly useful as you may not see the same doctor at every consultation. It can be useful for your summary to cover:
It can also be useful to tell your healthcare professional about:
This can make sure they understand more about you and your needs to help work towards the same outcomes.
It can be hard to talk about everything you want to in an appointment. Think about any specific problems you want to address. Make a note of these problems and write them in order of how important they are. This can help you make the most of your appointment. Think about what you’re hoping to get out of the appointment and what will help you achieve this. You might want to ask your healthcare professional some of the following questions:
About your condition
About available support
Crohn’s & Colitis UK provides lots of support. Check out our Local Networks and Virtual Social Events for more.
About your lifestyle
About medicines
About medicine side effects
Our information on Treatments has more on medicines used for Crohn’s and Colitis.
About surgery
See surgery for Crohn’s and surgery for Colitis for more information on surgery.
You might want to go one step further and guess what the answers to your questions may be. This might help you think about further questions you may want to ask in response to these answers.
Sometimes your IBD team might ask for you to have tests before your appointment. These could include blood tests or tests on your poo. Tests on your poo might include faecal calprotectin tests or stool cultures. Make sure to arrange these in good time so your IBD team can see the results before your appointment. Sometimes you will need to arrange these tests with your GP. Other times these tests will be done by a monitoring clinic at your hospital. What happens will depend on where you live, so make sure to check with your IBD team if you’re unsure.
Sometimes different computer systems are used in hospitals compared to GP surgeries. This can mean that if you’ve had tests organised by your GP, your hospital team may be unable to see the results. If possible, it can help to come to your appointment with a copy of any recent tests that your GP has done. It can also be useful to know when your GP has prescribed you medicines, like steroids.
Even with lots of preparation, going to appointments can sometimes be overwhelming. It can be difficult to remember what was said or what actions were going to be taken. To help with this, you might want to take someone along with you. This person can provide support, as well as help you remember what was said. You might want to ask them to take notes for you. This can help you focus on talking to your healthcare professional.
Thinking of questions to ask while trying to understand something you’ve been told can be hard. Having someone else who can help ask questions can be useful, but some people may not like this. It’s important to set boundaries with the person who is coming to your appointment. Let them know what you’d like help with and if there’s anything you are uncomfortable with.
When you arrive at the hospital, you’ll have to make your way to the department where your appointment is. Once you arrive, you’ll need to check in and take a seat in the waiting room. You might find that you must wait longer than you thought. Take something along to keep you busy while you wait. Hospital WiFi can sometimes be unreliable, so take something that does not need a WiFi connection.
Hopefully, you will know who you’re seeing before you attend your appointment. This information should be in your appointment letter. But sometimes there might be last-minute changes. You might be expecting to see your consultant but instead, see a specialist registrar. See Understanding your IBD team for more information on who they are.
Appointment times vary from hospital to hospital. But, depending on what your appointment is about, it will probably be 15 to 30 minutes long. First appointments tend to be longer than follow-up appointments.
Each appointment you have is different. But there might be a similar structure. Areas often covered include:
Your appointment may be in person, or it may be a telephone or video appointment. Some people prefer telephone or video appointments. These appointments can be easier to fit in around other commitments, like work, and you do not need to travel. Other people may find telephone or video appointments frustrating. This is because they want to be seen in person or know that their issue needs a face-to-face review.
Here are some top tips on how to make the most of telephone appointments:
It can be hard to explain how you’re feeling to someone else. You might find it difficult to find the right words or struggle to be open and honest. Describing your symptoms is important. It helps your healthcare professional understand what you’re going through. This section looks at words and scales to help you talk about poo, pain, and fatigue. Our Talking toolkit can also help you find the words to explain how you’re feeling, whoever you’re talking to.
The Bristol Stool Chart can be a useful way to talk about poo. It can help you describe the shape and texture of your poo.
It can also be useful to tell your healthcare professional about:
Everyone feels pain differently. Pain scales can help your healthcare professional understand how bad your pain is.
Pain can be very difficult to describe. Some of these words might be useful to help describe your pain:
Like pain, fatigue can be difficult to describe. It can help to think about how fatigue affects your everyday activities.
You might find it helpful to describe fatigue as:
Living with Crohn’s or Colitis can trigger lots of different feelings and emotions. It’s important to tell your IBD team how you’re doing mentally, as well as physically. Speak to your GP or IBD team if you’re finding things hard and feel you need help with your mental health.
Read our information on Mental health and wellbeing for more.
There are lots of complex words that can be used when talking about Crohn’s and Colitis. Your healthcare professional should try and explain things clearly. But you might find they use words that you’re unsure of. Here are some words your healthcare professional might say and what they mean. If you hear a word you do not understand, make sure you ask what it is. Our page on Medical Terms has more information.
Word |
Meaning |
Diarrhoea |
Going to the toilet a lot, with loose or watery poo |
Chronic condition |
Lifelong, ongoing condition |
Fatigue |
Extreme tiredness |
Relapse, flare-up, active disease |
When you feel unwell |
Remission, inactive disease |
When you feel better |
Ulcerated |
To have sore wounds called ulcers |
Opening bowels |
Poo, bowel movement, stool, faeces |
Personalised care |
You have choice and control over the way your care is planned and delivered |
Sometimes you might feel like your healthcare professional is not listening to you. This can be upsetting and frustrating. It’s important to remember that while they are an expert, you’re also an expert. You’re the expert when it comes to your experience of Crohn’s or Colitis.
Being able to speak up for yourself can be useful in making sure your voice is heard. This requires knowledge, communication skills, and being able to assert yourself.
We have lots of information to help you find out more about Crohn’s and Colitis. If you know what you want to talk about it can help to read up on that area. See All information about Crohn’s and Colitis for more.
Communication is key to a successful appointment. But some people may find this difficult, especially when under pressure.
You could try using phrases like:
Communication is not just about talking. Sometimes pictures can help you and your healthcare professional understand each other. See if your healthcare professional can draw a diagram to help show things like:
If you need a translator to help you communicate, let your IBD team know. They should be able to arrange for a translator to be present in the appointment.
Be assertive if you feel like you’re not being listened to. Being assertive means saying what you want in a respectful way. If you find it difficult to be assertive, try and imagine someone you know who is assertive and what they would say. You might find that taking someone along to your appointment also helps.
It takes guts to speak up for yourself. But being clear about your needs is the best way to get the most out of your appointments. Do not be afraid to ask questions about what matters to you. Your feelings and symptoms are valid and can have a huge impact on your life. It’s important to not let what you’re going through be dismissed.
Crohn’s and Colitis are long-term conditions that need specialised care. It’s important that the healthcare professionals who look after you provide a certain level of care. The IBD standards give guidance on the quality of care you should expect to receive. These standards were created to ensure care is the same throughout the UK. They help healthcare services identify strengths and areas for improvement. The IBD standards have been created by IBD UK. IBD UK is a group of organisations who work together for everyone affected by Inflammatory Bowel Disease. Crohn’s & Colitis UK is part of IBD UK. Visit IBD UK to find out more.
Before you leave your appointment, check that you know what will happen next. You might find it useful to ask the following questions:
At your appointment, your healthcare professional might suggest a new medicine. Sometimes this medicine can only be provided and monitored by your hospital team. Other times this may be monitored by your GP. Make sure you know who to follow up with for any monitoring or questions.
We’ve created a template that you can print off to write down your follow-up plan. You can also ask your IBD team to send you a copy of your clinic letter. This can act as a reminder of what was discussed and what the next steps are.
When you receive a date for your next appointment, try setting a reminder on your phone a week before. This will help give you time to prepare any questions in advance.
Some people might not have frequent appointments with their IBD team. Instead, they may be placed on Patient Initiated Follow-Up, known as PIFU. When someone is placed on PIFU, they can arrange an appointment as and when they need to. Being placed on PIFU does not mean you have been discharged. It means you oversee arranging your next appointment.
You might find your health or symptoms change between appointments. IBD nurse advice lines can be useful for accessing help between appointments. Our IBD nurse specialist map can help you find contact details for your hospital.
IBD nurse advice lines are not an emergency service. Most advice lines do not run outside of office hours.
You may also be able to contact your consultant via their secretary, should you need to. You could try contacting your consultant's secretary by calling the hospital switchboard. Switchboard is the main hospital telephone number. Other contact details might be on clinic letters or in clinic information booklets.
Following an appointment, you may want to get a second opinion. You have no legal right to request a second opinion. But the General Medical Council (GMC) states doctors must respect a patient’s right to ask for a second opinion. The GMC is the independent regulator of doctors. They focus on making sure doctors provide good and safe patient care. Most healthcare professionals will consider your request for a second opinion.
In England and Wales, your GP will need to make a new referral if you would like a second opinion from a different IBD service. In Scotland, you should ask your consultant to arrange a second opinion. If they do not agree your GP may be able to help.
Getting a second opinion can take a long time. It will depend on how long the waiting list for the hospital is.
Our interactive map can help you find other IBD services who could provide a second opinion. Not all IBD services are listed on this map. Your GP can also provide advice on the location of other nearby services.
Sometimes you might be unhappy with the care or treatment you receive. In these situations, it’s important to report this, so things can change. Where possible, try and discuss your concerns directly with the team involved. Sometimes this is not possible, or you may feel uncomfortable doing so. In these situations, Patient Advice and Liaison Services (PALS) can help. Our information on How to get a diagnosis has more information on how to make a complaint. Citizens Advice has advice on what to do if you’ve been discriminated against.
We follow strict processes to make sure our information is based on up-to-date evidence and easy to understand.
Please email us at evidence@crohnsandcolitis.org.uk if:
You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE, or contact us through our Helpline: 0300 222 5700
We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
Providing information about Crohn’s and Colitis.
Listening and talking through your situation.
Helping you to find support from others in the Crohn’s and Colitis community.
Providing details of other specialist organisations.
Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.
Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).
If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.
Would you like to save the changes made to this page?
Your details were successfully saved.