Is This Symptom Normal?

I regularly see people with Crohn's disease and ulcerative colitis ask if the symptoms they are experiencing are normal. They are usually asking because they're unsure whether they should contact their IBD team or not.

What is a "normal" symptom of IBD?

"Normal" is a pretty fluid concept when it comes to IBD symptoms because it presents differently in different people, even when they have the same disease.

Common IBD symptoms are:

• Changes in bowel habits – which could mean diarrhea or constipation
• Blood in your stool
• Fever
• Abdominal cramps
• Weight changes – including weight loss and weight gain

Extra-intestinal manifestations of IBD

There are also many secondary and extra-intestinal manifestations (meaning symptoms occurring outside of the intestine). The main ones being joint pain, fatigue, mouth ulcers, issues with the eyes, and skin conditions.

You have to get to know what's normal for you, but also be aware that IBD is unpredictable, and symptoms can change over time.

Recognizing a flare

I was previously confident that I knew when a flare was imminent. I was so in tune with my body, I'd never been wrong. I knew how my disease presented and what initial signs to look out for. Then, a flare came at me out of the blue.

I was experiencing symptoms that I'd not had with previous flares, and some of my usual ones were missing! In all of the confusion, I had waited to contact my IBD nurse, which in hindsight, was a mistake!

Reporting new IBD symptoms to your doctor

For this reason, I personally think that it's always wise to report a new symptom to your team. A new symptom means anything that's not your version of feeling well. Again, I say "your version" because it looks different from person to person.

Remission might not mean that you feel as well as you once did, pre-diagnosis. Your new version of normal might never feel quite right again! It's another circumstance in which you have to figure out what's normal for you.

For me, disease progression has always been rapid, and that's what sticks in my head when people question whether they should wait to report symptoms. It took just under 3 weeks from my initial symptoms to needing surgery. It scares me to think of that being the case for someone else, especially if it could have been prevented.

There are risks if you leave it and don't get treatment as soon as you can. Inflammation increases the risk of colon cancer and future flares, so it's important to reduce it ASAP.

Being cautious with normal vs. new symptoms

Of course, we can get food poisoning, viruses, etc. just like everyone else, so I'm not saying that experiencing abdominal cramps for an hour or your bowel habits changing for a day is something you need to act on immediately. For me, I think it's sensible to wait at least a few days to see if it's something that will pass.

But erring on the side of caution is preferable. You should know if the pain is off the scale and if it's something to seek urgent attention for.

Don't forget that IBD comes with extraintestinal manifestations, too, so that joint pain or those mouth ulcers might actually be your IBD coming out of remission! In conclusion, learn your "new normal," and if a symptom doesn't fit within that, let your IBD team know!