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inflammatory bowel disease

crohn's disease: what it feels like

occurring in just 0.06 to 0.5 per cent of the population, getting a diagnosis of enteropathic arthritis, which commonly develops with inflammatory bowel disease, can take years.

by emma jones

published sep 12, 2022

last updated feb 22, 2023

10 minute read

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10 minute read

join the conversation

enteropathic arthritis is associated with inflammatory bowel disease

a few years after kayla jenkins' crohn's disease diagnosis, she got a second diagnosis: enteropathic arthritis. supplied

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.

despite the fact that jenkins didn’t have the typical markers in her blood that usually indicate arthritis, her doctor was aware of a possible connection with ibd, and after ultrasounds showed joint damage jenkins got a second diagnosis: enteropathic 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.)

jenkins sat down with healthing to talk about what it took to get the right diagnosis, how she sometimes grieves the life she once had and the joy she gets from simply being able to care for herself.

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

it took a very long time to be diagnosed — about a decade. i was having significant flares of abdominal pain, weight loss and fatigue for about seven or eight years. so, it was very close to ten years before i finally received a crohn’s diagnosis. there is a lot of bowel disease in my family, so it was really frustrating that it took so long to get diagnosed.

i heard a lot of, it’s all in your head, there’s nothing wrong, you’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.

i had several ct scans and mris. every single one of these tests showed evidence of crohn’s disease, but every time the doctors would say that there was inflammation, but they wanted to see more. that just didn’t make any sense to me.

then i was transferred to a new doctor and he looked at everything as a whole. i think that when doctors can do that, when they can paint a full picture of things rather than focus on one specific thing, it makes a huge difference for a patient. he looked at like my family history, how much bowel disease there was, how much weight i had lost, and the imaging i had had done. then we did more imaging, and more scopes.

i initially starting taking steroids and [other medications] and within a very short period of time, i want to say something like six to eight weeks, i felt like a brand new person. within that year, i was making the decision to move from newfoundland to toronto because i felt so healthy. that was something that only a few months earlier i didn’t think would ever be possible. i was so unwell that i could barely walk my dog, i wasn’t able to eat. i never thought that i could live a different life.

what did it feel like to finally have a diagnosis?

it felt so validating to someone acknowledge it. you hear the words, you 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.

i was very scared. i was alone in toronto. it was my first experience with having a severe reaction to a medication like that. so i was ok to take a break from any treatments. and then — i think it was a combination of not treating the crohn’s disease and not being followed closely — the crohn’s disease came out of remission. i guess my body just created this perfect environment for a new illness to develop.

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

so i was actually doing very well. it happened overnight. i was feeling completely healthy, completely normal. i went to halifax to visit a couple of my girlfriends and the first night, i felt like i had flu-like symptoms — really rundown and like i had a fever. the first night i woke up in the middle of the night with severe back pain, and that whole week in halifax, i would wake up every night drenched in sweat, with severe pain down my spine.

when i was back in toronto, i immediately went to my family care physician, who ordered an x-ray and blood work — both were normal. i was very lucky that this particular doctor immediately said that i shouldn’t be having pain like that, and referred me to a rheumatologist.

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.

fortunately, my doctor immediately thought that because of the crohn’s, i might have arthritis, so we were working with an enteropathic arthritis diagnosis from the beginning. but we weren’t able to officially make that connection because there were no changes on the mri — everything was normal. and so for about a year and a half, i just continued to deteriorate. i had to stop working. it wasn’t until ultrasounds of my hands, shoulders and wrists were repeated that we saw the damage. then i was finally able to start treatment.

i just had to wait and let my body attack my joints until there was enough damage to be seen on imaging for this doctor to be able to make his case with insurance companies [to get my treatment covered]. this doctor is so important to me in so many ways because he’s been by my side from the beginning.

how has the medication impacted you?

i started the first biologic in january of 2020. it was easier in terms of insurance, not as expensive as others. but the side effects are pretty significant. when i take it — which is once a week — i’m very fatigued and nauseous. i’m on the bathroom floor next to the toilet for the whole day and the whole night. and then the next day, the best way that i can describe the way it feels is that it’s like the worst hangover you’ve ever had. it’s very mentally challenging to take it, knowing how it’s going to make me feel. but i know that the other five days out of the week, there are benefits.

how do you cope?

one of the best things for me has been sharing. i share a lot on my social media, i’m very candid about everything that i go through, i take my injections on instagram. everyone in my community that follows me, or that’s a part of my online community sees every single moment that i’ve gone through since the beginning of this journey to a diagnosis and treatment and what it’s like. i really wanted to let people know that chronic ailments don’t have a look and arthritis doesn’t have an age limit.

i have days where i grieve the life that i had and the person that i was in the body that i had. there are a lot of times that i don’t recognize the person that i am or the body that i’m living in. it is a loss and it’s not going to do any good to keep all of those emotions inside. i really just let myself feel what i need to feel and recognize that every emotion that i’m going through is very valid for the experiences that i’m having.

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

yeah, for sure. i am concerned, especially just coming through the pandemic and still living in a time where covid is very alive. our government took away the [public health guidelines] which is quite terrifying for someone with a chronic illness or who’s on immunosuppressive drugs.

there’s a certain level of fear, but i do what i can to protect myself. and i get blood work done quite frequently, so i always know where my levels are, i’m very careful with who i spend time with and the things that i’m doing. i’m very careful and protected when i’m at work — i work in a clinical setting. work is probably the safest place for me to be with all of our ppe and other protective measures.

what brings you joy?

what brings me joy now and what brought me joy before diagnosis and being chronically ill — i think those two things are very different. i take joy in very, very small moments — a warm cup of coffee brings me so much joy. when i was first sick, especially with the arthritis, i couldn’t wash my hair, i couldn’t brush my teeth, i couldn’t work. you realize that there are so many things we take for granted. we’re so fortunate to be able to brush our teeth — that is something that most people don’t even think about. i really just take so much joy in being able to take care of myself.

i have been back to work since january; i’ve been working part time. it has been very physically challenging at times, but it’s also been very good for my mental health to be able to financially provide for myself again and to connect with people outside of my home. my life right now is very low key — i spend time with my close friends and i make sure to connect with my friends and family in newfoundland. i’m very happy to be a homebody, and that is something that i would have never said a couple of years ago. i used to love to do things, but now i’m just so content to be at home, to be comfortable and cozy, and to be able to do a little bit of self-care.

that’s just probably the most important thing to me right now, to be able to take care of myself.

readers interested in finding out more can check out the arthritis society, or the canadian spondylitis association.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.

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