If you’re experiencing diarrhoea, blood in your poo, unexplained weight loss or extreme pain or tiredness, then there’s a chance you might have Crohn’s or Colitis. These conditions are types of Inflammatory Bowel Disease (IBD), which cause inflammation and ulcers in the gut.
We know that getting a diagnosis can sometimes feel like an overwhelming process, so we’ve broken down the steps you’re likely to go through to help you prepare for what’s ahead. If you’re struggling, check out our Wellbeing page to see what support is available.
Don't delay seeking help
We know it’s not always easy talking about your bowel habits, but the sooner you get diagnosed, the easier your condition will be to treat.
Some important things to remember:
- Your symptoms might come and go. Even if you have good days as well as bad days, it’s still important to talk to a healthcare professional to find out what’s going on.
- Not everyone’s symptoms look the same. You might know someone else who has Crohn’s or Colitis who has very different symptoms to what you’re experiencing. But that doesn’t mean that you don’t also have Crohn’s or Colitis. The conditions affect everyone differently.
- You could have no gut symptoms and still have Crohn’s or Colitis. Even though they’re known as Inflammatory Bowel Diseases, some people experience fatigue, weight loss, mouth ulcers, low iron levels (anaemia) or joint pain as their main symptoms.
I always knew something wasn’t right. It’s not normal to bleed or feel like that. Initially, I felt scared and didn’t want to tell anyone – but being diagnosed helped me come to terms with it and get on with life.
1. Talking to your GP
The first thing to do if you think you might have Crohn’s or Colitis is to make an appointment with your GP. They’ll ask about any symptoms you’re experiencing, and may ask about any family history of bowel conditions. If you're waking up in the night with pain or urgency to poo, then you should mention this - though not everyone experiences this, having symptoms at night separates Crohn's and Colitis from some other conditions.
Communication is key to a successful appointment, but when you’re under pressure it’s not always easy. Here are some helpful tips from our Appointments Guide:
- Don’t be afraid to use emotive language to say how bad things are for you, such as 'I'm not coping with...' or 'I'm concerned about...'
- Note down things that trigger symptoms for you. Maybe it’s stress, certain foods - making notes will help your GP understand more about what's going on
- As well as your current symptoms, let your GP know what‘s normal for you, so they can see how much things have changed
See our Appointments Guide for more tips around talking to your healthcare professional, keeping track and describing your symptoms and getting the most out of your appointment.
Don’t be afraid to ask specifically if they think it could be Crohn’s or Colitis – it could help to signpost them to the Inflammatory Bowel Disease toolkit for GPs, which has guidance for when GPs should test for the conditions. You should be tested for Crohn's or Colitis if you have had abdominal pain or discomfort, bloating, or a change in bowel habit for more than 6 weeks, according to the NICE Quality Standard for IBD - though you can of course seek help sooner.
2. Ruling out other conditions
The symptoms of Crohn’s and Colitis can often be quite similar to other conditions like Irritable Bowel Syndrome (IBS), so your GP should first order some tests to rule them out. These tests can’t confirm whether or not you have Crohn’s or Colitis, but they can help narrow down the possible causes of your symptoms.
|Your GP might examine your abdomen (stomach area) to check for any lumps or tenderness. They may also check your bum (back passage) for any haemorrhoids (piles). If your GP thinks you have piles, make sure they examine you to confirm this before you're given the diagnosis.|
Blood tests can show whether you have inflammation somewhere in your body and whether you are low in iron (anaemic) or other vitamins. Your GP can also order a special blood test to check for signs of Coeliac Disease. You can take Coeliac UK's online assessment to see if you should be tested for the condition.
Stool (poo) tests
Your poo can be tested to check if you have an infection that’s causing your symptoms, such as clostridium difficile (often known as c. diff). It can also find signs of bleeding.
Ask your GP to test your poo for Faecal Calprotectin. A Faecal Calprotectin test can show whether you have inflammation in your gut, which would be a sign that you may have Crohn’s or Colitis. However, a high Faecal Calprotectin result can be caused by other conditions too.
If your Faecal Calprotectin test doesn’t show inflammation in the gut, you might still have Crohn’s or Colitis – but it’s more likely that you have IBS or another non-inflammatory condition. Generally, a Faecal Calprotectin result of more than 100 micrograms/g would suggest that you should have further tests for Crohn's or Colitis - although different areas use different levels.
Faecal Calprotectin is not generally used to diagnose children, because the test may be less effective in people under 18. Your GP may also not use the Faecal Calprotectin test if you're an older adult (generally over 60 years old, but in some areas over 40). This is because they may want to rule out more serious conditions like bowel cancer first.
An alternative to the Faecal Calprotectin test is FIT (Faecal Immunochemical Test), which can find small amounts of blood in your stool.
For years I was misdiagnosed with skin conditions and allergies – it only was after finally getting a faecal calproctectin test that I was diagnosed with Colitis. One year later, I'm in remission and getting on with my life.
3. Getting referred to a gastroenterology team
If your blood and stool tests show inflammation, you should be referred by your GP to a defined specialist gastroenterology doctor in an IBD service. They have expert knowledge of gut conditions like Crohn’s and Colitis, and can do specialist tests like endoscopies (see below). In some areas, you may be able to have some choice over which hospital you go to if you have been referred through the NHS e-Referral Service.
It may take some time to get an appointment with your gastroenterology team. The IBD Standards state that you should have a specialist assessment within four weeks of being referred, but it may sometimes take longer. Your GP should let you know how long you can expect to wait – contact your GP surgery if you haven’t heard from the hospital within that timeframe so that they can chase up for you. You can also talk to your GP about how best to manage your symptoms while you wait for an appointment, and what to do if you start to feel worse.
4. Taking a look at your gut (endoscopy)
Crohn’s and Colitis cause painful sores (ulcers) and inflammation (swelling) in your gut. Your doctor will need to take a look directly at your gut to check if you have these ulcers. This is done by an endoscopy.
In an endoscopy, a doctor or specialist endoscopist uses an endoscope – a long, thin tube with a camera in its tip – to examine your digestive system. There are several types of endoscopy which can have different names according to the part of the gut being examined. The main types are:
Upper Gastrointestinal (GI) Endoscopy (or Gastroscopy)
This type of endoscopy goes through your mouth, and is used to examine the upper part of the digestive system – the oesophagus, stomach, and duodenum (first part of the small intestine). You may have this procedure if you’re experiencing symptoms such as nausea and vomiting.
A colonoscopy goes through your bum (back passage) to look at the whole of the large intestine, including rectum and colon.
Sigmoidoscopy (or Proctosigmoidoscopy)
This is similar to colonoscopy but only examines the rectum and lower part of the colon.
If you have any worries about your endoscopy, discuss them in advance a with your healthcare professional. Endoscopies may be uncomfortable, so you may be offered a sedative to help you relax, but they are normally not painful. Biopsies (small samples of tissue from the gut) are often taken during an endoscopy. These can then be examined under a microscope to confirm the diagnosis.
Some hospitals may offer a capsule endoscopy, which is a special sort of endoscopy where you swallow a tiny camera which passes through the digestive system, taking photos of the inside of the gut.
5. Understanding your results
You should receive a report of your endoscopy results within three weeks of the procedure – contact your GP if you haven’t heard back. In some cases, you may receive your report right away, and an endoscopy nurse will explain the results to you. You may be referred for an appointment with a gastroenterologist to discuss in more detail.
Different forms of Crohn’s and Colitis
The results on your endoscopy report might not specifically say ‘Crohn’s Disease’ or ‘Ulcerative Colitis’. It might use terms like proctitis, pancolitis, extensive colitis, or Crohn’s colitis (which is a type of Crohn's) for example. These are all different forms of Crohn’s and Colitis, which you can find out more about on our Crohn’s and Colitis pages.
Indeterminate Colitis/IBD Unclassified
Sometimes, it can be hard to tell the difference between whether a person has Crohn’s, or whether they have Colitis. If this happens, you’ll be given a diagnosis of Indeterminate Colitis, also known as Inflammatory Bowel Disease Unclassified (IBDU). This won’t affect your treatment.
Other conditions that aren’t Crohn’s Disease or Ulcerative Colitis
The term ‘Colitis’ by itself is a general term meaning inflammation in the colon – so if your endoscopy finds inflammation but no ulcers, your inflamed colon may be caused by something other than Ulcerative Colitis. If you see terms like ‘nonspecific Colitis’ or ‘Ischemic Colitis’ on your endoscopy report, you do not have a form of IBD - these are different conditions to Ulcerative Colitis. Charities like Guts UK may be able to support you further with living with these conditions.
If your endoscopy doesn’t find Crohn’s or Colitis
You might still have Crohn’s or Colitis even if your endoscopy didn’t find anything:
- You might have Microscopic Colitis. This is another form of IBD, which can only be diagnosed after a healthcare professional has taken a look at samples from your bowel under a microscope. You may have to wait a few weeks after your endoscopy to get the results of the biopsy back.
- Your Crohn’s might be in the small intestine, which can be hard to reach with an endoscope. You may have other tests, like an X-Ray, ultrasound or MRI scan to check for inflammation there. Find out more in our Tests and Investigations information.
- You might need to have another endoscopy in case something was missed the first time. This can happen when the bowel preparation did not fully clear out your bowel before the procedure.
If further tests still can’t explain your symptoms, you might have another condition. Your healthcare professional will advise you about next steps.
We know it can be frustrating not to have a clear answer to what’s making you feel unwell. It can sometimes take a bit of time to reach the correct diagnosis, so you may find it helpful to keep a record of the symptoms you are experiencing so you can show your doctor.
If you are told you have Crohn’s or Colitis
After diagnosis, the IBD Standards state that you should be seen by a healthcare professional who specialises in Crohn’s and Colitis. You should be able to start a treatment plan within two weeks of diagnosis, or within two days if your symptoms are more severe.
Finding out you have Crohn’s or Colitis can be a shock. But now that you can put a name to your symptoms, you can start to manage them. And we’re here to help, every step of the way. We’ve helped thousands of people just like you access the information they need to find answers, get support and take control.
Don’t get too overwhelmed. When I was diagnosed, I panicked. It felt like my world was falling apart. So I’d tell myself not to spend time worrying about what may or may not happen. Instead, listen to the doctors, read up on it yourself, and know that you will find a point where it all feels normal. It’ll become so day-to-day that you won’t even think about it.