Since she was a little girl, Adelaide woman Jordan Lambropoulos has been fighting with Crohn’s disease, a bowel condition, that can cause severe inflammation to a patient’s digestive system.
The obstinate disease, that has been particularly aggressive in Jordan’s case, has had a major impact on her daily life. However, she refuses to let it define her.
Keeping up with school has been anything but easy for the 24-year-old, but she ended up excelling in her final exams.
“Over the years in high school I taught myself most of the curriculum from home or hospital, staying in touch with teachers via email. I ended up graduating with a 95.00 ATAR-which will always be my proudest achievement”, Jordan tells Neos Kosmos.
Suffering from symptoms since birth, the young Greek Australian had severe mouth ulcers and swelling in her face, and was incredibly fatigued, experiencing severe pain and bloating after eating small amounts.
The truth was that something was getting in the way of her growing, but the doctors simply could not get to the bottom of it.
Her pneumonia at 9 years old, came to shed light on this mystery, finally leading to her diagnosis of Crohn’s disease.
“As I grew older and my disease progressed to the stage it is now, we realised I had a rare aggressive and progressive form of the disease. It affects my mouth, oesophagus, stomach, small intestine, skin, my colostomy, joint, rectum and my eyes.”
Leaving her suffering from almost daily partial bowel obstructions, a potentially life-threatening complication of Crohn’s, the 24-year-old had to get a significant amount of small intestine removed.
“Unlike the large bowel”, she says, “you cannot live without a small bowel.”
“This is the part of my disease that will ultimately limit my life and cause the decline in my quality of life even further if we are unable to control the disease”.
With a strictly limited diet, young Jordan’s body has not responded to any prescribed medication or treatment.
“However, I’m also human and crave normalcy so badly so will often suffer the consequences of eating whatever I want!”, Jordan told Neos Kosmos.
Her medical team, she recounts, can be lenient with what she can eat, under the condition that she is getting some form of nutrition, since maintaining her weight and nourishment is a big struggle.
Following a colostomy – an operation that creates an opening for the colon (large intestine) through the abdomen, Jordan has a stoma pouch that collects her body waste.
“Being an ostomate has encouraged me to step out of my comfort zone and embrace my body for what it is. Sure, having a bag isn’t ideal, but I have no choice in the matter so might as well embrace it!” Having had 11 surgeries, during the last 12 months alone, and with conventional therapy being ineffective, Jordan’s disease would aggressively attack her stoma and the skin surrounding it.
As a result, her body became steroid dependent, leaving the 24-year-old spending more time in hospital than home.
Cortisone therapy is working in masking her symptoms and can be extremely draining, both physically and mentally, leaving bone marrow transplant as her only sustainable treatment option.
Hoping that transplant will be as successful to her as it has been for other severe refractory autoimmune disease, Jordan is waiting for the green light from the team in Sydney to get a chance of resetting her immune system.
“It gets hard trying to plan for your future, or to relate to family and friends when you are so uncertain on whether you have a future. Seeing friends progressing in life while your life stands still is astronomically heartbreaking”, Jordan admits, but feels grateful for her support network and friends who have stood by her side.
“Living on borrowed time really does make you question how you want to be perceived by others, and really does make you want to hold your loved ones close-because tomorrow is never guaranteed.”
Becoming a doctor has always been Jordan’s dream. And, if anything, the disease has given an additional meaning to her passion for science and medicine.
“Once I am recovered from my transplant, I will be studying medicine, in hope to become a colorectal surgeon eventually. I have such passion for patient advocacy as well as anatomy and physiology, so feel that this will translate well into a career as a healthcare provider,” she explained.
Having experienced how ‘exhausting’ it can be explaining a rare condition as a patient to others she says she wishes “people were better educated on how serious this illness can be.”
“We wouldn’t be looking at a risky bone marrow transplant as a last resort if there was a simpler more effective option available.
“The lack of representation and advocacy in the media needs to change so that those of us living with this disease feel that the public are adequately aware of just how debilitating it can be.”
