The rare autoimmune disease named after 1930s gastroenterologist Burrill Bernard Crohn manifests differently for everyone. It is an inflammatory bowel disease so named as it affects the body’s gastrointestinal tract. Both the small and large intestines of 20-year-old university student Tianna Samuels are inflamed causing her to not absorb nutrients as she should despite her consuming food regularly. The inflammation is the source of immense pain and discomfort in her bowels. Adhering to a strict diet minimizes the discomfort though is unable to stop her severe weight loss due to lack of nourishment.
Her current reality would be cemented in the summer of 2019. Around the desk of her summer internship, she began experiencing unusual bowel troubles so intense she was prompted to end her tenure prematurely. The first trip Tianna took to the doctor to inquire about the changes in her body proved unsuccessful in naming the problem she was experiencing. She explains that though a very specific disease it is hard to diagnose as it neither has a cure or a test designed to detect it.
“I find that in Jamaica, a lot of our medical practitioners aren’t aware of what Crohn’s is because it’s not something they’re specifically trained in and it’s not a very common illness in our population… It’s a big downfall.”
The darkness surrounding Crohn’s locally is heavy. Samuels discusses that since posting her story on the crowdfunding website GoFundMe, she has gotten innumerable messages from people who moved abroad to deal with the autoimmune disease because of the lack of knowledge and treatment in Jamaica.
“It’s a lot easier to treat abroad. In Canada, they have a Crohn’s hospital just because it’s so common up there. As soon as you get your symptoms they know exactly what it is and exactly how to treat it but of course, our resources are not strong in that way. It’s limiting.”
Officially diagnosed in August of 2019, Tianna celebrates that not long after she first started experiencing her symptoms, an uncommon occurrence to Crohn’s patients. The diagnosis preceded a weeklong hospital stay and endless testing. She reminisces on her life before the autoimmune disease and her regret of not being as appreciative of her ability to eat whatever she wanted without much repercussion. Now she is cautious; steering clear of foods that might irritate her inflamed intestines and perpetually travelling with items she’d need to make surprise flare-ups easier for her to deal with on the go.
“It would be nice to not feel so tense all the time but that’s just what it comes with”, Samuels expresses.
Despite her issues the university student faces, she remains thankful. She recounts how her experience thus far has taught her that she possesses strength greater than she could ever imagine. The sleep loss from frequent nighttime bathroom trips to relieve herself and frustration at the control her symptoms were having over her, Samuels has now accepted as part of her journey. If anything, she admits, it gives her a great story to tell people at the end because “nobody listens to anybody who hasn’t been through something”.
Crohn’s, though severe, is not a life sentence. Long-term remission is possible. Tianna herself awaits the commencement of her treatment soon.
“There’s medication. There’s treatment. For some people who had to, unfortunately, go the route of removing their intestines completely, it has made life a lot easier for them. They can eat the food that they [couldn’t have eaten] and they gain their weight back.”
Along with the physical, Tianna was experiencing mental side effects as well. As her weight lowered, so did her self esteem. She recalls her stay in the hospital and instructing her mother to not allow any visitors lest they glimpse her frail appearance brought on by Crohn’s.
“I didn’t take any pictures. I was determined I did not want any sort of memory of this state of my life, I just felt so grotesque. Even now it’s still hard, especially with clothes. A Lot of my clothes don’t fit anymore, I’m wearing the same thing all the time but I’m accepting that this is a part of the journey as well. Nothing is permanent. My body is a force to be reckoned with.”
Her illness has not stopped her studies and she remains a full-time university student during a pandemic. She credits her faith for her ability to push through three-hour classes, household chores and still trying to function as a normal person.
“I stay grounded and I’m always praying.”
Samuels relies heavily on her support system as well. She depends on the prayers of her family and her friends’ help when she drops the ball academically. Also cheering her up is her YouTube channel, Chit Chat with Chan. Though currently on hiatus from making videos, creating content she greatly enjoys. That along with a slew of other activities helps keep her sane.
When asked if she had any advice for persons newly diagnosed with Crohn’s and facing struggles such as hers she stressed the importance of remembering that nothing is impossible.
“It might feel like the world is ending and you have no idea how you’re going to get through but every day that you wake up, that your eyes open and you breathe in and breathe out, that means your purpose isn’t finished and you have so much further to go. Somehow, someway you will make it.'”
There could be plans of Samuels becoming an advocate for the Jamaican Crohn’s Disease community on the horizon. She feels a fierce passion to educate the public about the disease she and many others suffer from and is encouraged by the people around her.
“I definitely do see myself doing that. It’s an important story to share. I remember when I just got sick a lot of people would tell me ‘Just eat up couple dumplings and you’ll be fine’ and ‘Why yuh look suh mawga?’. Those comments are insensitive and they hurt but they’re just coming from a place of ignorance. If I can’t be that person that gets the message out… I would love to.”
Keep up with Tianna’s journey on her Instagram @tiachante and support and share her GoFundMe: https://www.gofundme.com/f/588dp-tianna-needs-your-help?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1
