crohn's disease: what it feels like

kayla jenkins knew something was wrong for years — as someone with a family history of inflammatory bowel disease (ibd), she knew her symptoms weren’t normal. a few years after being diagnosed with crohn’s disease — a type of inflammatory bowel disease that causes, among other symptoms, abdominal pain, severe diarrhea and fatigue — jenkins was also experiencing joint pain that was very similar to arthritis.

enteropathic arthritis is a type of arthritis that can occur in connection to inflammatory bowl disease. it is thought that this can be attributed to joint inflammation that can occur during bacterial gut infections, however, the connection has not been completely clarified.

it is thought that 0.065 per cent of the population has enteropathic peripheral arthritis (arthritis in the spine and hips) and between 0.05 per cent and 0.25 per cent have enteropathic axial arthritis (arthritis in joints and tendons other than the spine.)

let’s start with your crohn’s disease diagnosis.

i heard a lot of, it’s all in your head, t here’s nothing wrong, y ou’re so young . unfortunately, there are so many things in my [diagnosis] that are abnormal or atypical, which made it challenging to get a diagnosis. by the time i was diagnosed, i was very sick — i had lost significant weight. but i had found a doctor that i really trusted and [who] finally believed me and wanted to put the effort into helping me. it was really continuing to advocate for myself, even though i was extremely fatigued, both mentally and physically at that point, and just finding someone that i trusted and knew would help and guide me towards figuring out what was wrong.

so even with a family history of bowel disease, you can’t convince doctors that your symptoms are meaningful. what was that like?

it was incredibly frustrating. at a certain point, when you hear that so often, it makes you wonder, is this in my head? am i actually really feeling these side-effects? and am i really having these flares of pain? you have these moments of doubting yourself and questioning whether or not what you’re experiencing is actually real, because these medical professionals are supposed to be the ones who you trust and who know more than you in terms of medicine. but ultimately, you are the one who is living inside your body and so even though you’re extremely tired, you’re also desperate for answers. i really had to keep pushing through and know that i was deserving of the help that i desperately needed.

once i got over the doubt in myself, i started reaching out to different communities online, mostly forums. there are mass amounts of people living with different chronic illnesses around the globe that are continuously told by medical professionals, this is in your head or this is not as serious as you make it out to be. that really helped me to gain my voice when speaking with medical professionals. that was really huge, actually, in helping me advocate for myself.

and then you were able to get the tests you needed.

what did it feel like to finally have a diagnosis?

it felt so validating to someone acknowledge it. you hear the words, y ou have crohn’s disease and you’d think you would be so devastated, but honestly, it was a very joyous moment for me.

when did your doctors realize there was something else going on?

when i moved to toronto, i unfortunately, experienced the same situation where [the] gi doctor that i was referred to was extremely dismissive and harsh. he immediately said, i don’t believe that you have crohn’s disease, i’m not going to treat you, i’m not going to see you . a period of time went by, and during that time i had a reaction to the medication that i was on, so i stopped it and then also ended up getting a pretty nasty viral infection that required me to be hospitalized.

what did it feel like when the crohn’s came back and you started showing symptoms of arthritis?

it was a very frustrating journey for me to actually receive an official diagnosis and start treatment. i actually don’t have any inflammatory markers in my blood (the usual indicators of arthritis) — they’re just always normal, regardless of how much inflammation there is or how sick i am. i’ve since learned from seminars that i’ve taken with the arthritis society and the canadian spondylitis association that this is quite common.

how has the medication impacted you?

how do you cope?

your medication suppresses your immune system. does that worry you, especially with covid? 

what brings you joy?