Carly Medosch on the difficulties of getting people to understand the inflammatory bowel disease
How were you diagnosed with Crohn's disease, and what were your symptoms?
My symptoms started with severe exhaustion. As a kid, I loved school and had no trouble waking up in the morning. But suddenly my mother would have to come into my room and practically drag me out of bed. I would actually cry and beg for a day off to catch up on sleep, because I thought that would help and I would feel better the next day. My initial paediatrician did bloodwork that showed low iron and gave me pills and that was it. At that time we did not know how to be empowered, but eventually my mother found a new doctor who was female and younger. Unfortunately, she had me coming in multiple times each week and would grill me about what I was eating. Eventually I realised that this doctor thought my mom was starving me intentionally. The third paediatrician, one hour out of town, suggested Crohn's disease on my first visit with just an office exam. I was sent to a paediatric gastroenterologist who did an exam and colonoscopy to confirm. This whole process took six months and I was getting increasingly sicker the entire time.
At what age were you diagnosed?
By the time I was diagnosed, I was 13 years old.
What have you been told about your prognosis?
I have what is classified as 'moderate to severe' Crohn's disease, which means I have had more and worse disease activity than some. At the time of diagnosis, I was not specifically told very much, which I think is better than the horror stories I have heard from fellow patients. My doctor (once I found her) was very compassionate and was committed to helping me feel better by using all the tools available at the time.
How did you cope?
Coping with Crohn's disease has not always been easy. When I was diagnosed, the name did not mean anything to me. I did not know anything about it. The first friend I told asked me when I was going to die. The other thing that makes coping difficult is that some of the medications I was on as a kid gave me terrible side effects that caused insomnia, rage, and depression. It was hard to feel so bad and try to keep up with living life and schoolwork.
What treatment have you had?
After over 22 years, I have tried a lot of treatments. I was on steroids and antibiotics mostly as a kid, but that's generally not a long-term treatment these days. That didn't really work for me and I ended up in an awful cycle where I had surgery about every three years. Surgery for Crohn's disease should always be very carefully considered, because the disease can just reappear at any point along your digestive system (from the mouth to the anus) as well as extra-intestinal symptoms, such as joint pain and eye problems. At a few points, I had a PICC line to get extra nutrition through TPN. I had a nifty backpack that could hold a battery-powered IV pump and so I was able to hook up for 8 hours after school and even leave the house. I took that thing trick-or-treating with me one year. It was great to not be stuck at home!
Would you consider taking part in a clinical trial?
I am very proud to have participated in two clinical trials for Crohn's disease medication. The first was the most exciting because it was for an entirely new type of medication (at the time): biologics. I was so scared about my future quality of life with such active disease, so it was a pretty easy choice to enrol in the trial. I later enrolled in another study for a different biologic. One of my favourite parts of chronic illness advocacy work is being able to meet young children with IBD who have been able to avoid surgery thanks to the modern medications available.
What do you find the most difficult aspect of the condition?
Honestly, my answer to this question may depend on my current symptoms. One of the most difficult aspects of living with Crohn's disease is the unpredictability. One day I might feel okay and then another I might feel awful. One day a food might be okay to eat and another it might cause a great deal of pain. The other aspect that is awfully difficult is the general lack of awareness and understanding. There is less money given for research, and patients often try to downplay their illness because of a large gap in understanding by the general public. Most struggle more than is necessary because this is not more widely understood.
Do you think the depth and quality of information offered to patients is adequate?
I think the information varies wildly based on which individual doctor a patient sees at the initial time of diagnosis. Academic centres seem to have much better information and many even offer special programmes for patients with the goal of educating them to better manage their disease and lead happier lives. One point that not everyone realises is that a gastroenterologist is not necessarily an IBD specialist. A patient might need to travel 60 miles or much more to find a doctor who has the specialisation and approach that makes them a good partner.
Do you find that treatments like yours are accessible for patients?
It seems like the quality of care that patients receive in America varies so much depending on a lot of variables, one of which is the knowledge of their doctor, but another important factor is their access to adequate health insurance. The biologics I inject each week cost over $1,000 per shot if I paid the cash price. My health insurance bumps my portion down to around $200 for each 90 day supply, and the pharmaceutical company offers a discount programmes so I end up paying only $5 for that same amount of medication. A few years ago, I found myself unemployed and had to actually walk away from my home because I could not afford to pay both my mortgage and the health insurance premiums, which were $900. This was before the US' Affordable Care Act banned insurance companies from discriminating against people with pre-existing conditions, so I wasn't able to get private insurance. On a brighter note, one option that should be available to US patients soon is biosimilars, which will offer some more affordable options for patients who use biologics.
What message would you give patients newly-diagnosed with the condition?
Definitely get involved to learn more about the disease. When I was diagnosed, we didn't have the robust internet that exists today. I can read scientific articles, find information on research studies, watch funny videos by other women with IBD, see photos of girls rocking bikinis with their ostomies, and find friends to encourage and support me. It's okay to be scared and overwhelmed. It is totally possible to live a long and healthy life with Crohn's disease and you probably won't always feel the way you feel right now.
What is your greatest hope/fear for the future?
My greatest hope for IBD is that we find a cure soon. My greatest hope generally is that we ensure access to high quality healthcare for all people, because even if we had a cure tomorrow, I would still struggle with the side effects from all of my surgeries. My greatest fear is that apathy and misunderstanding will cause many people with chronic illness to die of preventable causes.