A Life With Crohn's
-Human being with purpose, hope, and optimism living with a chronic disease.
Crohn's Disease is an inflammatory bowel disease ( IBD ) that can affect any part of one's digestive system. It's a chronic disease, the cause of which is unknown and there is no cure. It does not discriminate by gender, age, or race, in other words, anyone can get it. It's a very complex and highly individualized disease in that symptoms can be mild, moderate, or severe and vary widely from patient to patient, as does treatment. Treatment is customized specifically for each case. It's a debilitating and life-altering disease certainly, but it's by no means hopeless.
Living with ANY chronic illness for any length of time can be very difficult and life changing. My name is Sati Rampersad and I have been living with Crohn's Disease for exactly 27 years this month (April 2017). Fortunately, I live in Canada where I have access to some of the best medical care in the world for this particular disease. Even with this advantage, my journey has still been a very long and sometimes difficult one.
Throughout the years, I've had the regimented medical treatments, countless hospitalisations (as many as 3 or 4 in one year), 4 major surgeries, and all kinds of disease-related complications. I've even tried non-traditional, alternative treatments like acupuncture, elimination diets, and homeopathy. All of which have led me to where I am today; I now have Short Bowel Syndrome as I only have about 6 feet (183 cm) of small intestine and just under 4 feet (120 cm) of large left. A normal person has 20 feet (6 m) and 5 feet (1.5 m).
With a great deal of family encouragement, I've decided to share my experiences, both good and bad, and the adjustments I've had to make, both mental and physical to not just cope with life but to LIVE a good quality life with the challenges and limitations that many people never face and can't understand.
My intention in doing this website and blog is to provide helpful tips, hope and encouragement to anyone looking for some, particularly fellow Crohn's Disease sufferers.
More Personal Information
I know it's sometimes easier to identify and reach out to someone if you know a bit about that person, hence my reason for giving some more of my personal information.
I was born and grew up in the Caribbean, the island of Trinidad and Tobago to be exact, migrated to Toronto, Canada with my husband and seventeen month old son in the late '80's. It was always my intention to further my education here; I have a Bachelor of Arts Degree with a major in English and a minor in Social Sciences. Aside from Shakespeare, Dickens, Hemingway and all those literary geniuses, I studied Economics and Human and Social Psychology for two years and loved it so much I wanted to pursue my Master's Degree in Human Behavioural Science and go even further, life permitting. But life didn't permit unfortunately, in fact, it came to a screeching halt.
Within months of my arrival in Toronto, I got deathly sick --- high fevers, excruciating abdominal pain, cramping, severe bloody diarrhoea, vomiting etc. I thought I caught a bug or had food poisoning or something like that. I had no idea what was happening to me and the doctors couldn't figure it out either. This went on for almost one year. Remember this was the '90's! I was eventually diagnosed with Crohn's Disease. Two years after, against all odds, I managed to have a second normal, healthy son, who I thought of as my little miracle, and 25 years later here we are.
My Views On Things
There's a saying that goes, "when life gives you lemons, make lemonade". But what if you don't like lemonade. After a great deal of self-reflection and, I'll admit, self-pity and internal struggles, I came to the pivotal realisation that when life gives you a chronic, hideous illness like Crohn's, you have to learn to adjust your taste buds and acquire a taste for the damn lemonade! After all, what's the alternative? Obsessing, moaning and groaning about how life is so unfair, and "why me", "why this", "why am I being punished" are all a total waste of time and energy. This makes you feel even worse, not to mention your family and friends who are trying to be supportive.Sure it takes tremendous hard work to develop the right mind-set, attitude, and strength. But it does pay off! Trust me on this; I'm living proof. You will end up leading a happier, more fulfilled life, believe me ( not every single day of course! Because who does?). You just have to learn how, then teach the genuine people in your life how to help you do so.
I like to remind my fellow crohnies, Crohn's is not just your disease, it's your loved ones' as well, they suffer right along with you, maybe not physically but certainly emotionally. The way you're feeling on any given day and all of your life's adjustments and changes also affect them. Always keep that thought in your head. Many a time I'd felt the urge to throw in the towel, I was in so much pain and absolutely miserable, but I soldiered on, because of my husband yes, but most especially my two young sons. They became my focus, my reason to fight the good fight. They gave me strength. They gave me purpose. If you can't do it for you, do it for a loved one.
In my blog, which I hope to write every few days, I'll share some of my experiences with my medical issues, pregnancy, how I handle daily life - with my family, in social settings, in the workplace, planning for outings and trips. I've had to educate people about my illness, my limitations, and their expectations of me. For the most part, from my experience, most people are understanding and accommodating. But there will always be the A-holes who think you're faking or exaggerating because there's nothing outwardly physical they can see. I say screw 'em! They're not important. They're not worth your time or energy. Many people don't seem to realize that not all illnesses and disabilities are visible. They're quick to judge but you have nothing to prove to anyone but yourself, only you know your own limitations, capabilities, and strength. In my blog, I'll be very candid about my experiences, and I promise it won't be all doom and gloom. So please check it out. I will be posting my first blog on Friday April 7th. I've had a very eventful life to date and have so much to share.