You look just fine…the truth about ‘ghost’ diseases.
If we have met you would know that I generally take on too much by filling all the hours of the days with outings, activities, dinner dates, and work. I have always made sure to put other people’s needs in front of my own but this year it is different. I’m getting selfish with my time, my company, and my health. The month of November is Crohn’s and Colitis awareness month (last month was Lupus awareness) and it seems fitting to discuss these autoimmune diseases that so many silently suffer with, including myself.
Making the decision to take a step back from organizing and producing the Modern Woman Show & Expo had been in my thoughts for the last 12-15 months – my partner and family scoffed at the idea. I remember at a family gathering my brother even saying, “Ya, you say that but we all know you too well”. As the year continued and the workload intensified, and trust me… I feel like I truly thrive in the most chaotic of schedules- I was in my element. Busy, exhausted, but happy.
Happy until my body decided that it wasn’t going to tag along for the ride.
It is in my nature to push through hardship and take on more than the average human. I have an I can do anything attitude which has benefitted my career, connected me with amazing people in my business, and given me the ability to volunteer in various not for profit organizations – all while sipping on martinis with a clean and organized house (insert eye roll). The unfortunate reality is that I live with a ghost like autoimmune disease called Lupus with a side of Crohn’s disease. Lupus seems to be a name recognized by most people but when asked exactly what it is even I have a hard time describing the often debilitating disease because it has so many faces. The one I’m looking at effects my digestive organs – the Crohn’s, it has triggered the early onset of arthritis in my hands and feet, handed me the infertility card, and when in full flare up my vessels turn purple and my joints swell. It’s bizarre – one minute I could be fine and the next I seem to be fighting for my ability to digest my own food, use a pen, or walk on my own two feet.
My Lupus and Crohn’s story started almost 15 years ago. As a teenager I suffered from irritable bowel like symptoms and like most young people I didn’t want to mention it to a soul…..you just can’t talk about poop when you’re 16! I wish I wouldn’t have been so concerned about the stigma surrounding digestive issues because maybe being diagnosed earlier could have saved some of my colon. Once the proper specialists were on my case I went through drug after drug including heavy doses of steroids to try and bring the inflammation down in my intestines. With no improvements, a super round face, and a thick layer of peach fuzz across my entire body (a side effect of the drug Prednisone) a group of surgeons decided that the partial blockage in my small and large intestine would have to be operated on. At 21 years old I underwent a bowel resection with a chance that I would wake up with an ostomy bag….Oi Vey!!! Luckily my surgeon was able to reattach the ends of my somewhat healthy intestines and I was able to avoid the ‘poop ‘bag.
I went ten whole years with minimal symptoms. I took no medication. I would have arthritic flare ups, times where maybe I didn’t feel just right, odd skin rashes, and an increasing intolerance to lactose but overall I enjoyed a decade of life without feeling “sick”. This brings me to the summer of 2015 – after a stressful time in my life I started to have a general feeling of being unwell. Like I was going to get a cold or flu at any moment. Constant body aches and dull headaches but, I powered through it. I ran everyday with my dog, biked, and attended yoga classes. In June of 2015 I noticed a pain when sitting in a chair and that pain began to worsen. A large lump became present and within weeks grew large enough that I could not sit and could barely walk. I was hospitalized for days without any answers – eventually an operation to remove the abscess was performed and then my nightmare of the past three years began. I was in full flare up. Abdominal pain all the time, I'm going to shit my pants at any moment ( I now know the location of every public toilet in Saskatoon - home depot has a beautiful facility). To make things worse nothing healed….I literally had a hole in my butt cheek from the abscess surgery that never closed up….and three years later it is still open. This hole went on to track new routes through my body (called fistulas) into my intestines, my bladder, and my pelvic wall. WOW, how could I be so lucky? New abscesses have formed, been operated on, and go on to create more fistulas. I don’t have words to describe how truly awful this is. My team of specialists and surgeon keep a good eye on me with constant appointments, routine blood work, and planned testing and operations. I had monthly visits to an infusion center for intravenous biologic drugs that we hoped would reduce the function of my immune system. I have a case worker that finds and has successfully provided funding for my drugs that cost between $3000 and $5000 a month. With no improvement in sight I have been placed on a newer biologic that I inject into my stomach or leg every 4 weeks...with a $3000 per a syringe price tag. I do thank my lucky stars for being born in a country with a health care system that provides compassionate funding.
The drugs I put in my body work to decrease the function of my immune system. Autoimmune diseases are bizarre in that they create a hyper immune system which in essence decides to attack itself. This puts me in a constant state of vulnerability. Once September hits I seem to have the never ending signs of a cold, the flu, and the fear that I will be hit with the latest spreading germ any minute. I CRINGE at the people that scoff at immunizations and put people like myself in constant danger of diseases that I can not fight, illnesses that shouldn't exist anymore – but that is an entirely separate blog post. During the summer months a simple mosquito bite on my arm can turn into a spreading infection requiring a pic line and daily visits to the ER for IV antibiotics. But wait it gets better! My body has now decided to reject antibiotics. The only thing that may save my life.
Now this isn't all doom and gloom, if you saw me – I go to work every day, attend hockey games, socialize with friends, take part in fundraising events, and attempt to be present for my family. I have been given a set of cards that are not optimal but doable. We all have things. I have yet to meet a person that has a perfect storybook life. Coping and learning to live with your deck of cards is what I chose to do. It might not be easy but it’s my reality. Most people don't know this side of my life because I didn't want it to define me. I don't ask for special treatment from friends and family and I do my absolute best to lead a very normal life. In saying that because I am not getting better and this flare up doesn't seem to be backing off I'm starting to accept more help and adapt to the changes these diseases have done to my body. This has included giving up some important things to me (like the Modern Woman Show), being in bed most nights before you have finished your dinner, and being committed to getting my health back - which could include that word that scared me 10 years ago - the ostomy bag :(
So in light of awareness month here are a few misconceptions of Crohn’s and Lupus:
Misconception #1: Lupus is contagious
Lupus is not caused by a carrier and cannot be transmitted by one person to another. It is not a virus or bacteria. It could, however, be passed from mother to child through genetics.
Misconception #2: A butterfly rash is a telltale sign of lupus
It is thought that the butterfly rash across the face is a classic sign of lupus, it’s not the end-all be-all. Some people with lupus never experience the rash and some people have a facial rash for other reasons. I personally have never experienced this butterfly rash but weird rashes appear on my abdomen, chest, back, and neck.
Misconception # 3: Crohn’s can be cured with a proper diet and reduced stress
The fact is that diet alone does not cause Crohn’s disease. It also cannot cure it. Experts believe that IBD develops due to the combination of certain genes with certain environmental factors. This means that a person may have genes that make the immune system prone to an abnormal reaction. Contact with certain environmental factors may cause the immune system to overreact, leading to IBD.
To date, no one knows what environmental factors have a role in Crohn's. Diet may seem like an obvious environmental factor. Crohn’s disease is more common in people who live a Westernized lifestyle. It is a disorder of the digestive tract. Diet affects the type of bacteria that you have in your gut. Nevertheless, research into the role of diet in Crohn’s disease is inconclusive. No one has proven that any particular food or nutrient causes Crohn’s disease. For each study that has connected a dietary factor with Crohn's, there are other studies showing no connection. I will say that in a flare up I will avoid certain foods (ie. milk products, raw gas producing vegetables) because they will cause more abdominal pain or diarrhea symptoms.
AS for stress, in my experience I feel better when it doesn't exist. I believe everyone feels better when it doesn't exist. Your entire well-being is better off when you lose the anxiety and learn to deal with life's ups and downs. I go to hot yoga because I feel better overall - mentally and physically.
Misconception # 4: Lupus and Crohn's is uncommon
It is estimated that 1:1000 Canadians are living with lupus according to lupuscanada.org. As for Crohn's....1:150 Canadians suffer from some sort of IBD with over 180k people alone suffering from Crohn's.
Misconception #5: It’s rare to see anyone young struggling with Lupus
A lupus diagnosis commonly occurs in childbearing years, from ages 15 to 44. I was diagnosed at 21 but looking back showed signs of this disease from a very young age.
Misconception #6 & #7: A lupus diagnosis is almost always deadly and Crohn’s has a higher rate of cancer
While both diseases is incurable, both disease’s symptoms can usually be controlled with medication and surgeries. Crohn’s patients have a 20x higher chance of getting colorectal cancer and the use of the biologic drugs to reduce the function of our immune systems drastically increase the occurrence of lymphatic malignancies – with some drugs increasing the risk by 70-80%. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700422/)
Some tips from one ghost disease sufferer to another (some i wish i took seriously earlier):
Get enough sleep.
Remove stress (if you can) from your life.
There is no pot of gold at the end of this rainbow for those that work themselves into a grave. Don't miss out on day to day life.
Choose your company wisely.
If you need to go to yoga. Just go to yoga.
and lastly but most important -
Learn to put your health first. Now is the time.