Today is the first day of Crohn’s and Colitis UK Awareness week and each year I try to be as active as possible with the content I have on here. However, while I have lots of articles for those with IBD e.g.
A guide to being Newly Diagnosed with IBD
A guide for friends and family for those with IBD
The Psychological Impact of IBD
I wanted to spend today sharing advice for those who suspect they might have IBD and aren’t sure what to do.
What is IBD?
Inflammatory Bowel Disease is a collective term for Crohn’s Disease, Ulcerative Colitis and Microscopic Colitis. Every 30 minutes, someone is diagnosed with IBD but many people spend years waiting for a diagnosis. There are many symptoms of IBD, but each disease is different. Just because you do not have one (e.g. bleeding or weight loss) does not necessarily exclude you from having IBD. Common symptoms include…
- diarrhoea
- bleeding when going to the toilet
- weight loss
- mouth ulcers
- stomach pain
- fatigue
- nutritional deficiencies, e.g, anaemia
- joint pain
However, depending on the location of your IBD, you may not have diarrhoea at all. In fact, some people report even having constipation!
What should I do if I think I have it?
1. Keep a detailed record of your symptoms. There are apps that help you log your stools more accurately, e.g The Bristol Stool Scale. This is vital as much of the miscommunication with doctors can be patients not explaining their symptoms p. Keep a log of how often you go to the toilet, any possible triggers and stool consistency.
Image Source: Bristol Stool Scale.
Along with this, mention any symptoms going on. Even if they’re nothing to do with your digestion. Irregular periods? Joint pain? Tiredness? They could well be a sign of IBD (but of course, can be of many other things too). Make sure you spell out EXACTLY how you feel, a rating system of 1-10 may be helpful.
Will my doctor do tests?
Yes, it’s likely your doctor will do a blood test. This can check for inflammation levels in your blood BUT over a quarter of patients do not show this during a flare-up; I myself had normal results for years and years. There is no blood test for IBD, rather this will test for general inflammation in the blood-so a high result does not mean IBD necessarily either, it could be as simple as a cold.
Many people are ‘diagnosed’ with IBS simply by a blood test and this should NOT be the case. It is very important you are persistent. At the least, you should be offered a faecal calprotectin test. This is not the same as a regular stool test (which may check for things like parasites) but instead for inflammation in the blood.
However, the gold standard for IBD is a colonoscopy. Not a sigmoidoscopy-which again people are offered. A sigmoidoscopy means they can only see a small section of the digestive tract and this means many conditions are missed.
A colonoscopy is much more accurate (although a small number of people have IBD higher in the digestive tract and it only shows in MRIs ). At the end of the day, a doctor wouldn’t diagnose a fracture without an x-ray of your leg, would he? So why would he diagnose ‘IBS’ without looking at your bowel?!
Now you’ve panicked me and I’ve convinced I’ve got it!
Don’t stress! IBD is still rare BUT IBS is a diagnosis of exclusion so it is vital IBD is ruled out. Similarly, coeliac disease (more on this here) needs to be ruled out too! After being misdiagnosed for 12 years, I’m just really passionate about getting the awareness out there.
For more information on IBD, visit Crohn’s and Colitis UK
Hi this info is very useful
I think I may have BID. I had been diagnosed with INS from ssince I was a teenager. I had many tests done including Barium enema cameras shoved down or up one end. In the end I changed my diet to almost vegetarian but with a little fish now and then and eat high fibre. However symptoms are always there with constant discomfort. From your info it maybe that I have a form of IBD as I now have bleeding. But not sure what to do.
This was a really helpful post for anyone who suspects they might have IBD but isn’t sure what steps to take. I appreciate the reminder not to panic and to focus on getting proper medical advice and testing before jumping to conclusions. It’s also interesting how conditions like IBS or coeliac disease can have similar symptoms, which makes professional diagnosis so important. Articles like this are valuable because they guide people toward the right next steps instead of self-diagnosing online.