Is it my Crohn's disease or something else?
One of the most frustrating things I personally find about living with Crohn's disease is the fact we can't *see* our disease. Although no autoimmune disease is easy, I can't help but think those with autoimmune conditions like psoriasis have it slightly easier in that they can tell at a glance whether they're flaring or not. They can take a photo or show it to their doctor; who can see exactly what's going on and its severity. With IBD, it's a whole different ballgame. Not only do we spend time asking 'is this Crohn's or...' but so do our doctors. Tests aren't instant and unless we sign ourselves up to a weekly colonoscopy (no thanks!), tests aren't always reflective of what is going on with us. How many times have you wished for a looking glass into our intestines that can tell us what's going on? Otherwise, it really is one long guessing game.
Are my symptoms because of something I ate?
The thing about Crohn's or ulcerative colitis is that we forget what it's like to have a normal digestive tract. And those in good health still have days when they are chained to the toilet; wondering if they shouldn't have ordered that fish dish or eaten from a new takeaway establishment. Food poisoning or even simply a bad hangover can play havoc with our stomachs. But when mine even starts to grumble, I assume immediately that my Crohn's is back with vengeance!
So what do I do? I'm not ashamed to admit that I'll text my husband or family, 'WHAT'S YOUR STOMACH LIKE TODAY?' after a meal out; to see if it's just me. And oh the delight when they reply they haven't felt great!! It's not my Crohn's, it's just a dodgy prawn, I rejoice!
Another problem with this is that even if your friends and family are fine, the role of diet and Crohn's is a complicated one. We all have foods we reach for in a flare (hello, mashed potato and broth) and foods we know are risky (I'm looking at you raw salad). Yet, when we feel unwell, we suddenly turn into Sherlock trying to figure out the trigger! 'How can it be x when I ate two weeks ago with no problem?' we declare. Whilst a food diary can help sometimes, you can also drive yourself crazy because newsflash: there's no logic to Crohn's disease. One day fish and rice is your friend, another it's the enemy.
Is it 'just IBS'?
IBS is often dismissed by those of us with IBD; since our condition is obviously much more serious. But if you're struggling with symptoms and your doctor says it's not a flare, they'll often say it's 'just IBS.' This can be so confusing to those of us who still don't feel well in remission and, to be honest when my doctor says this, I feel like I'm being fobbed off! Unless we've had a full colonoscopy that week, how do we really know it is 'just IBS?' I'm not sure that the label is helpful.
Is it the big C?
Basically the question I ask myself every time I google anything to do with my digestion. What is that weird pain? Should my poo look like that? Am I supposed to be that tired? To be fair, I could google 'I feel well' and I'm sure Dr google would find a way to twist it, so moral of the story is: Don't google and speak to your doctor to manage the increased risk of this we can have with IBD.
Is it my anxiety?
And finally, it's that chicken and egg situation. Because when anxious, I do indeed feel sick/have stomach pain and can't stop going to the toilet. However, when I feel like this, my anxiety also increases! Of course, some people with IBD have severe bleeding, but for those of us who don't have so many clear red flags; it can be difficult to know!
Which aspect of awareness week are you most excited about?