I am currently feeling overwhelmed with sadness, anger, and frustration. Upon learning that one of PEI’s two gastroenterologists is leaving the Island, I don’t know whether to curl up in the a ball and cry, or go light something on fire. I’m actually devastated.
Here’s my story in as small of a nutshell as I can put it in:
I was 11 years old when I was diagnosed with Irritable Bowel Syndrome (IBS). At the time, this was the label for a throw-away condition. A “we know there’s something wrong, but we don’t know what it is” diagnosis. After enduring what were very traumatic tests for a little girl, this diagnosis was extremely depressing.
Fast forward to 2015. I won’t get into all of the details of those 21 years in between, but an important thing to note is that IBS is now categorized as a chronic bowel disorder. It’s been mostly manageable for me over these years, with a few bad spells here and there, but ultimately I could live my life without worrying about having symptoms every day, and I had very few dietary restrictions aside from very spicy foods and fried foods.
At the end of 2015, however, my digestive health took a sudden and severe turn. My general digestive problems were much more painful more often, and I was having far more frequent ‘attacks’ where the pain was so bad that I couldn’t leave the house, not to mention there was very little time to go anywhere between the urgent trips to the bathroom. After being very sick over the holidays last year and a visit to outpatients, I realized I needed to pay more attention to my diet and my overall my health.
Now…It’s been nine months since my first visit with my doctor to figure out what had changed with my digestion, and I’ve still had no updated diagnosis or treatment. Blood tests and stool samples have been the extent of my testing within this time period. A shrug and the words, “I guess it’s just IBS. What a way to live” was a definite low point in this experience. I mean, thanks for the sympathy…but…I’m not satisfied with that response to my life upheaval. My doctor’s referral for me to see a gastro-specialist was denied, apparently because “there’s a 3-year waiting list”, which I guess means that my case is not yet severe enough to be added to the list.
But let’s just talk for a minute about how severely this has been changing my life.
I’m 100% self-employed, and in this last nine months, I’ve had to turn down so much work to the point that I may have to close one of my businesses. I don’t really like to publicize my income, but if I tallied the freelance contracts I’ve lost, it would add up to be about $15-$20,000 of lost income. I’m grateful to be capable of being home-based with my other businesses so I still have some income, but there are many days when I can’t make it to meetings that are necessary to move forward, grow my businesses, and pursue new opportunities. I’ve missed many family and friend gatherings, and the ones that I’ve been able to attend I’ve been so preoccupied with how I’m feeling that I’ve hardly been able to enjoy them.
On bad days, leaving my house at all is out of the question, even an 8km drive to the nearest convenience store is not an option without having to pull over and run into the woods. The distance I travel on those days is rushing from the couch to the bathroom. On the worst days (thankfully these are rare), I can’t stand upright, I’m convinced that my appendix has ruptured, I’m dying, and have to go to the hospital.
All of this alludes to the fact that my IBS (or whatever it is now) has pretty well become a disability. If that doesn’t warrant being on a waiting list to see a specialist – even if it’s three years until the appointment – I don’t know what does.
But just because PEI’s medical system has failed me, doesn’t mean I’ve been sitting around moping and feeling sorry for myself. Aside from focusing on working from home and trying to be as productive as possible within these limitations. In the spring time, I eliminated dairy, wheat, and corn from my diet and I have been making all meals from scratch – no prepared foods whatsoever because everything seems to have milk, wheat, or corn derivatives it in. I’ve since started the FODMAP diet in addition to these eliminations. I’ve tried being more active. I’ve tried being less active. I’ve tried decreasing and increasing my fibre intake. I’ve removed refined sugars from my diet. I’ve tried costly holistic allergy treatments. I began a meal and symptom tracker (August-to-present) to see if there are any patterns with the types of foods I eat and my digestive issues, and there are no patterns at all, which makes me question if it’s even food-related and if I’ve been making these changes for nothing. Very, very frustrating and discouraging.
And…this is just my own story! There are countless others in PEI who are dealing with terrible digestive issues who are unable to or don’t know how to change their diets/lifestyles in ways that make even the slightest difference in their digestion. These people need doctors and gastroenterologists. We need help.
There needs to be much more focus on gut health in Prince Edward Island. Because, as Hippocrates said, “All disease begins in the gut.” Therefore, anyone can rationalize that diagnosis and treatment of gut issues is important for the overall health of Islanders.