How is IBD diagnosed? Tests and how to cope - tips from others with IBD
When we go to the doctors and they suspect we might have IBD, there are a series of steps and tests we might go through to be diagnosed.
If we go to the doctors with some or many of the following symptoms; tummy pain, diarrhoea (or constipation in some cases), bleeding and/or mucus when we go for a poo, fatigue, weight loss; we may be tested for IBD.
In the UK, typically we would go to our GP first. Our GP may then run some blood tests and a stool test. If these are indicative of IBD then referral would be make to a specialist (gastroenterologist) for further testing.
Usually extensive testing is carried out to diagnose Crohn’s Disease or Ulcerative Colitis. Here are some of the tests that might be included:
TEST: Medical history and physical symptom assessment
WHAT ARE THEY? A verbal and physical assessment can give doctors more information about the symptoms, how severe they are, and how long they have been happening for. They will want to chat about what’s going on and they may want to take a look and a feel of your tummy too.
TIPS FROM ME: Sometimes it can feel embarrassing to talk about poo and intimate details of what you are going through but don’t forget the doctors are there to help and hear about these things all the time so the more open and honest you can be the more they can understand and help.
TEST: Blood tests and serological markers
WHAT ARE THEY? Blood tests involve taking a little blood from a vein in our arm. Markers that might be looked at include inflammatory markers, such as C reactive protein (CRP) and erythrocyte sedimentation rate (ESR), nutrient deficiency markers like iron and B12 which if low can be indicative of malabsorption, and autoimmune markers, such as ANA+.
TIPS FROM ME: A blood test can sound scary if you have never had one, but its nothing to worry about, it feels like a sharp scratch and is over in a flash and the results can be really helpful to the doctor in deciding what to do to help. It can help to look away from your arm and focus on something else whilst its being done if you are nervous or squeamish!
TIPS FROM FELLOW IBD’ERS:
Make sure you are well hydrated in the lead up (multiple anonymous)
Eat something beforehand (anonymous)
Keep warm for the blood test – it makes it easier to take blood (anonymous)
If you are a fainter tell them in advance so they can lie you down to take the blood (anonymous)
Keep you arm relaxed and not tensed (anonymous)
You might get to know what your good veins/arms are – tell the nurse when you go in as that can be helpful (anonymous)
When you get a nurse you like request them for future blood draws if you can (anonymous)
Look away or keep eye contact with someone you’re close to who is with you or think of a happy place (multiple anonymous)
TEST: Stool tests
WHAT ARE THEY? This is where you will be asked to put some poo in a pot to send to the lab for analysis. Stool tests can rule out infection; show elevated inflammatory markers, including faecal calprotectin and faecal lactoferrin; identify fat in the stool, and occult blood. These are all helpful in working out what might be going on.
TIPS FROM ME: don’t worry you don’t have to poo into a pot is just taking a little sample using the scoop and pot the doctor gives. There are some really helpful tips on the NHS website.
TIPS FROM FELLOW IBD’ERS:
Don’t be embarrassed – you are doing it to hopefully find some answers and that’s what matters (@little_chompiee, anonymous)
Hand it in as soon as you can after you have done it, don’t let it sit around – its most useful when its fresh (anonymous)
Collection tips: use a big sterile pot to collect the poo then take the sample; ask for a collection bowl and gloves or use your own sterile container at home that you can then sterilise or dispose of, line the bowl with cling film under the toilet seat to collect (multiple anonymous).
Get a few extra sample boxes/containers from your GP/hospital so you are prepared (anonymous)
TEST: Endoscopy, with biopsy
WHAT ARE THEY? Whilst blood tests and stool tests can give an idea of what might be going on inside, actually looking inside at the lining of the intestines is the best way to see what’s happening. Depending on what they want to look at might be an upper endoscopy, colonoscopy, flexible sigmoidoscopy and/or capsule endoscopy. Endoscopy allows the specialist to see any inflammation, ulcers, bleeding and anything else that might be going on in the intestines. Sometimes they take little samples of the lining called biopsies but this doesn’t hurt. These are looked at under a microscope and can show if there is inflammation can cannot be seen with the naked eye.
TIPS FROM ME: For the specialist to take a good look at what’s going on inside the intestines need to be clear of food and poo. The doctors will give you a bowel prep that you take at home that helps to clear everything out and usually a special diet needs to be followed for a couple of days before this too but the doctors will give you all the information you need. Some people don’t mind the taste of it but someone people don’t like it. Tips to make it more bearable include keeping it in the fridge so its nice and cold, and drinking it through a straw. Because it makes you go to the loo quite a few times whilst everything is cleared out, having some nice soft loo roll on hand is helpful. Also applying some barrier cream like Vaseline or Bepanthen to the exit can help protect it – doing this right from the start and then after every loo visit will maximise protection.
TIPS FROM FELLOW IBD’ERS:
Mix the bowel prep with squash/lime cordial to make it taste better (multiple anonymous) (NB: please check this with your prescribing doctor to check this is OK to do with the bowel prep you have been given)
The hardest part is the fasting and solution not the actual scope! (anonymous)
If you are anxious tell them, don’t hide it, they are used to it and have ways they can help us (anonymous)
Listen to relaxing music to help keep you more relaxed in the run up or watch something funny on your iPad to keep your mind occupied (@chazandthepouch, and anonymous)
A capsule endoscopy is so easy and nothing to worry about (@woodymagoo70)
Ask for pain relief or sedation if you want it, it can help make it much more comfortable (Gemma @catsandcrohns, multiple anonymous responses)
Have less sedation if you can as its much faster to get out of hospital and it doesn’t hurt (anonymous)
You can often see the cameras journey – be prepared or ask not to see it (anonymous)
Don’t eat lots of stuff straight after, pace yourself (anonymous)
Have a peppermint tea after to help with any gas (multiple anonymous)
Its over in a flash, I got so worked up for nothing! (anonymous)
TEST: Imaging
WHAT ARE THEY? These can include X-rays, CT scans and MRI scans; these provide more information about the extent of inflammation through various layers of the gut, can help to show whether there are any narrowing’s in the intestines or strictures, and any bowel obstructions.
TIPS FROM FELLOW IBD’ERS:
Re-read your appointment letter – most of the time there will be extra instructions on if you are allowed to eat or not before your MRI or CT scan so make sure you follow any instructions (@thegrumblinggut - who is also a radiographer!)
Don’t be afraid to say if they are putting you in a position that’s uncomfortable (anonymous)
For an MRI ask for headphones/earplugs and music – helps it go by quicker (anonymous)
For MRI focus on your breathing, ask to listen to music/radio – see it as a chance to have a lie down! (@hearthbymegan)
Apply your favourite form of controlled breathing and go to your happy place in your imagination (anonymous)
Bring someone with you for support – a close friend or family member so you don’t feel alone (@thegrumblinggut, @little_chompiee)
Pregnancy – its important to notify the radiographers if you know/think you are pregnant as this can determine if you can have your scan or if an alternative such as ultrasound or MRI should be used (@thegrumblinggut)
Wear comfy clothes and avoid wearing anything with metal (e.g. underwired bras) – you may not be asked to change into a gown if what you are wearing is deemed appropriate (@thegrumblinggut, anonymous).
Taken together, some or all these assessments help doctors to diagnose IBD. They also help doctors to work out whether its Crohn’s Disease or Colitis (ulcerative or microscopic).
Where doctors find inflammation in the large bowel only, sometimes it's unclear whether it is Crohn’s disease or ulcerative colitis, and a diagnosis of IBDU (unclassified) may be given.
All of these tests are also really useful to help monitor our IBD and help us to keep an eye on things. For example, I regularly request blood tests from my clients GP’s or IBD teams to check for nutrient deficiencies and monitoring calprotectin can be a useful way to understand how well inflammation is being controlled in the bowel and whether there may be a risk of relapse.
If you’d like help with your IBD, lets have a chat. You can book a (free) 20 minute no obligation phone call with me to find out how I can help you. During this call I’d love to hear about you; your journey, your struggles, your life, and we can chat about the best route forward for you. Whether you are right at the beginning of your journey or have had IBD for years I can help.
If that sounds interesting click below and find a time that works for you.