a woman is embarrassed as she holds a bag with a stool sample for diagnostic tests for ibd

Common IBD Diagnostics and Exams and How They Disrupt Life

I don't think we talk about the kind of tests and procedures we encounter throughout our journey with IBD enough.

For me, because there have been so many, and because my personal mindset has always just been that it's a necessary evil, I can sometimes forget how tough they are. And let's not forget when we go through a bunch of time-consuming testing only for the results to show nothing – even though we're still experiencing terrible symptoms.

The first ones normally feel the most traumatic. It's all new to us, so all of the info leaflets and prep and then the actual test/procedure itself can be overwhelming. Most of the time (but not always), the first tests for Crohn's or ulcerative colitis are simple. It's worth noting that I am in the UK and things might be a little different elsewhere!

Initial diagnostic tests for IBD

Initial tests typically involve taking a sample of blood. A stool sample could be requested at the same time, depending on what symptoms are present.

They look for specific indicators of inflammation such as erythrocyte sedimentation rate (ESR or sed rate) and C-reactive protein (CRP), as well as white cell count in blood, and calprotectin in stool. They may also check for things like parasites to rule out other things.

If blood tests aren't something that you regularly have, which is often the case before someone is diagnosed with a chronic illness, even they can be a source of anxiety.

Doing a stool sample might also cause embarrassment – the actual sample and the dropping it off. Handing over your poop to someone else just doesn’t feel natural, does it?! Not to mention how awkward it can be actually getting the sample in the pot!

The colonoscopy

Once inflammation is identified, it's onto the next tests, which would usually start with a colonoscopy.

The mere thought of a camera going up one's bottom is enough to make many wince! There's so much information to read, which can be scary, especially when you get to the bit about possible complications. It's a lot to take in!

Then begins the bowel prep, which starts days before. Generally, 2 days in advance it’s a plain and boring diet with no fibre. The day before, you will usually be allowed breakfast before 9 a.m., but nothing else. Clear fluids only for the rest of the day, and then the prep to clear everything out. How you take these will depend on which preparation you are given. (And of course, follow all your doctor's specific instructions for this process.)

Time-consuming and stressful

On the day of the colonoscopy, there’s likely more prep, and then you must stop drinking 3 hours before the examination begins. When you get there, it seems like a million people ask you the same questions, and the next thing you know you’re all gowned up.

In my experience, I could choose to have painkillers, sedation, and Entonox (gas and air). All of these things will impact what happens next and how long your stay is. It's common to be canulated, which is another distressing element if it’s not something you are used to. All of this can be overwhelming, especially when it’s a whole new experience!

The procedure itself can cause some pain and discomfort. Some tolerate it better than others, and it will also depend on what’s going on inside. Being told to relax when you know where they’re putting the camera can seem a little silly...

Wrapping up colonoscopy testing

The endoscope is actually very small, and it has a little light on the end. Air is used to inflate the bowel so that they can get a proper look. This is what normally causes me the most pain.

I usually just have gas and air so that I can be in and out quicker, and I like to watch what's happening and see what they’re seeing on the screen. It serves as a distraction. They will probably take biopsies if they see anything of interest.

After the examination is complete, monitoring takes place for about an hour before you can leave, and it’s normal to be passing wind for some time afterward. Better out than in! A little blood is normal if you’ve had biopsies taken, but if there is a large amount then you will need to give the relevant department a call – you should have been given a phone number. Again, this can be a wholly stressful experience!

And that's basically it. A few days of disruption and some recuperation time needed, just for one little scope!

Other types of diagnostic tests for IBD

Sometimes, other endoscopies might be used – upper endoscopy for the higher part of the digestive tract and flexible sigmoidoscopy for the rectum and lower colon.

Capsule endoscopy may be used to look where the others might not be able to access. This involves swallowing a capsule that takes thousands of images as it travels through the gastrointestinal tract.

Other tests can be carried out using imaging and scans such as X-rays, MRIs, CT scans, and contrast/barium meal or enema X-rays. These are often another whole day out. Lots of questions, canulation, fancy gowns... You get the picture. It's not fun, it's not exciting, it's just what it is.

Ongoing tests, ongoing disruption

When you have your diagnosis, the same tests are still often carried out as routine, or to check disease progress when symptoms occur.

Then there are other blood tests that might be regularly ordered to check levels of vitamins such as iron, B12, Vitamin D, and folate. They may also be used to check for dehydration, liver and kidney function, and to check the levels are good (therapeutic) for the treatment you’re on. Some people may even begin having issues with their veins because they’ve been accessed so often!

Colonoscopy can present more barriers when you're further into your treatment because you likely have to stop taking iron four days in advance, which might make you feel really rubbish. You may also have to stop taking medications such as codeine, which many rely on for pain relief, to function. Loperamide might also need to be stopped, meaning you can’t really leave the house. Plus, the risk of dehydration may be higher if you’ve had surgery or suffer from malabsorption for other reasons.

So, whilst they might have become just a part of our lives that we just have to get on with, they can still be deeply disruptive to our lives!

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