The Warning Signs of Crohn's Disease
Last updated: September 2020
When I was first diagnosed with Crohn's disease, I never really thought of anything beyond my digestive symptoms. And, naively, that they would soon be resolved now I had a diagnosis. It's not unusual for us to interpret IBD as a 'pooing disease.' We now know it goes far beyond that.
I had lots of symptoms (some weird; some obvious) over the years that I hadn't even realized was part of my IBD. It's thought my illness began at 16, but I wasn't diagnosed until I was 28. Yet, there were warning signs that something was wrong that I hadn't possibly thought could lead to a Crohn's diagnosis. Here are the IBD warning signs I wish I recognized...
The Crohn's warning signs I wish I recognized
Geographical tongue as an oral manifestation of Crohn's
Around ten years ago (around 5 years after my IBD symptoms had begun), I noticed my tongue looked...well kind of weird. It had all sorts of cracks and shapes on it; something my doctor diagnosed as 'geographical tongue.'
This is when your tongue starts to resemble a bit of a map-google it! It's a non-serious condition so I forgot all about it. It was only when reading up post-diagnosis that I learned that geographical tongue is actually one of many oral manifestations of Crohn's disease. Others include things like ulcers and tongue coatings. Who knew?
Weird and irregular periods
Looking back, this was definitely one of my first signs of IBD, but it took me another twelve years to get diagnosed! My periods had always been awol when I think about it. Firstly, they didn't begin until very late (I was 16-I've since read delayed periods are a sign of Crohn's but perhaps I was just a late bloomer) and then a few years later, as my stomach symptoms worsened, they just disappeared without a trace!
Where had they gone? Well, I definitely wasn't pregnant so nobody had any clue! And it took going on hormone medication for them to appear. Thankfully, my cycle has now stabilized but it's crazy that this wasn't taken seriously as a sign. I've also since noticed that my Crohn's has actually been linked to my periods (more on that here)
After years of stomach aches, the condition progressed to perianal abscesses. Again, none of my doctors made the connection between the frequent abscesses and my IBD. I was even told to improve my cleaning regime and testing multiple times for diabetes. This was definitely one of my most painful symptoms. I wish I had pushed further and asked why the hell this was happening to me!
Now you might think this is an obvious one, but in my opinion, if you are female, doctors do not take a diagnosis of anemia seriously. It's almost as if they expect us menstruating creatures to be so weak and frail. I was diagnosed with severe anemia and told it was due to my weird periods, being slim, or not eating enough meat.
Some doctors did make the connection between my anemia and weird periods, but being slim was used as an excuse for both. I've always been fairly slight, whether in remission or flaring. My weight is pretty stable most of the time. I found that many doctors used this an excuse, saying I'd feel better if I 'ate more.'
Constant hunger and weight loss
This leads to my final point! Despite doctors telling me to eat more, I probably ate more than any person my age! I just thought I had a weird appetite but looking back now, I obviously wasn't absorbing anything. I would always feel hungry and if I didn't eat within 30 minutes of getting up, I'd feel incredibly faint. I thought it was just me, but now that my disease is more under control, my appetite is so much more steady!
I'd love to hear your warning signs? What were your obvious IBD signs that you kick yourself for not recognizing sooner?!
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