Tuesday, March 19, 2019

"Crohn's Disease Ate My Colon" - My story (Part Two)


Everyone's journey through the IBD diagnosis tunnel is different.
Everyone's trip down the IBD symptom slide is different.
But the common thread for all of us, is IBD itself, whether that be Crohn's or Colitis.

For me, I was finally diagnosed in June 1988 but symptoms started December '87/January '88 soon after returning from a trip to England for my Nan's funeral.
One morning I got up, showered, shaved had breakfast and laid on the couch to watch the news before work as usual. I worked as a retail manager in a large department store chain. Nothing out of the ordinary, but that was the last time my life would be "ordinary".
As I watched the news I started to feel something in my throat, like a gas bubble. I kept swallowing and swallowing to try and get it to move but to no avail. I made a cup of tea to see if that would help and it did....sort of. As I drank, I could feel it move down my throat, into my chest and into my stomach, then the feeling I had to go to the washroom and the sudden urge to have a bowl movement. And that's where and when the pain started.
Just like that.
No inclination of a problem. Nothing leading up to it. No signs. Nothing.

I was 19 years old.

Made appointment with my doctor and he thought it was unusual but went right to testing for a parasite as I had just returned from a trip abroad. Had the usual blood work and added fecal testing. Everything showed up negative of course but the pain now was more and more frequent and soon I started to eat less and less. The fetal position was now common for me. Laying on my bed, curled up, waiting for the "pain train" as I called it, to pass. I could feel the pain coming like an oncoming train, it would peak and then fade away, like the train had passed on to it's destination. I saw two other doctors in the same office when my doctor didn't know what he was dealing with and those two did the exact same tests. Now I have pain, diarrhea and blood all the time and the weight is dropping. Not sure if its from what's happening to me or it's because I'm not eating as much. Every time I ate, pain would soon follow, so why eat if it's going to hurt me.
So far, three doctors are still convinced I picked up some parasite while in the UK. By now, my clothes were hanging on me and I was pulling the belt on my pants so tight, I had to make more holes for the clasp. Keep in mind, this is 1988, there was no internet to "Google" my symptoms. I was at a loss and getting frustrated, angry and sad all at the same time. There was no history in my family.
I started my "IBD journey" at a very healthy and athletic 170 lbs (77 kg / 12 stone). I was a soccer player and a competitive figure skater prior to that. Never was sick. Ever.
I was now around 150 lbs (68 kg / 10 stone)

It's now May/June 1988.
It was the last doctor in the same office that figured it out, just on the symptoms and test results alone. "I think you have Crohn's Disease," he said, "you are showing the same symptoms as another patient of mine that was just diagnosed."
"Crohn's Disease?", I asked, "what's that?"
He went on to explain that it's an inflammatory bowel disease, which he then had to explain what inflammatory bowel disease was. Which now, thinking about it, is kind of funny.
So, I asked, (and I remember this sequence of events very, very clearly) "Okay, so how do we get rid of it?" And his answer hit me hard. "You can't," he said, "you are going to have this the rest of your life. There is no cure for Crohn's Disease."
"There must be something we can do?," my mum asked.
"Other than medications and surgery, there's nothing else I can do," my doctor answered.
I remember the look on my mum's face.

I was 20 years old.......

Next: Part Three

Friday, March 15, 2019

Top 10 IBD Blogs To Follow In 2019

top ibd bloggers title image - illustration of digestive system

Discussing bowel movements is undoubtedly a taboo subject for many people, which has helped a stigma form around Inflammatory Bowel Disease (IBD). For people living with IBD, most commonly in the form of Crohn’s Disease or Ulcerative Colitis, ‘embarrassment’, ‘shame’, and ‘isolation’ are regularly used words to describe the emotional strain that accompanies the physical symptoms of their condition. These bloggers, each excelling in particular areas, write openly and honestly about the realities of life with IBD. In doing so, they are helping create a community that offers support, raise awareness that helps tackle the stigma, and provide practical tips for various walks of life.

Top IBD Blog for Real Life
The authors of these blogs offer a glimpse into their lives with IBD. While each author’s story is unique, many of their experiences that have been shaped by life with IBD with strike a chord with their blog’s readership.

Research performed over the years suggests people living with IBD are at a heightened risk of developing comorbidities. It is a conclusion Jenni Lock would likely attest to, given that she lives with conditions such as fibromyalgia and bile acid malabsorption in conjunction with Crohn’s disease.
For the last decade or so, Jenni has kept a journal of her life and the effects of Crohn’s and fibromyalgia in particular. It is an incredibly raw and honest account of that time, covering everything from the impact of chronic diseases on her mental wellbeing to the ongoing battle to find effective treatment.
If you are new to Jenni’s blog, her ‘Medical History Highlights’ page is worth reading to gain an understanding of her journey since the early 90s, while taking the time to read her library of posts will provide you with greater detail of the last 10 years.
Although Jenni often discusses the most difficult aspects of her life, her writing is delivered with a supplementary dose of wit and humor – not least thanks to her unashamed use of memes. In fact, if you fancy a chuckle, the ‘Memes is Life’ section of Jenni’s website is one you should take a moment to peruse.

According to her Facebook description, Sam Cleasby is a blogger and public speaker raising awareness of IBD, ostomies, self-esteem and being so bad ass...
Sam’s blog, SoBadAdd.Me, was created in 2013, 10 years after her diagnosis of ulcerative colitis and in the midst of a particularly severe flare. It was around the time Sam started her blog that she decided to have surgery. In the early entries, she explains the reasons for opting for surgery and chronicles the build-up to the subtotal colectomy and end ileostomy procedures for which she was preparing.
She continued scribing after the procedures, openly discussing the difficulties she was facing, such as issues with self-esteem and concerns about family relationships.
In the six years that have subsequently passed, Sam has continued to write about practically every aspect of her life, from further surgeries and mental health to traveling and attending music festivals.
Given the engaging nature of Sam’s writing, it is little surprise that she is a capable public speaker and has given talks around the UK and Europe, as well as regular radio appearances.
Sam has undoubtedly helped many people over the years. For anyone living with IBD, has a loved one who does, or simply wants to gain a greater understanding of life with a chronic illness, SoBadAss.Me is well worth subscribing to

As Leaving the Seat Down enters its tenth year of existence, its author, Vern Laine, continues to write as prolifically as ever.
Having lived with Crohn’s disease since the late ’80s, Vern stated his intention in starting the blog was “to help me vent, but at the same time maybe help someone else along the way.”
Vern has published nearly 800 entries since then, a number of which compile his whimsical “you might be a Crohnie” series of one-liners (all of which are compiled into a single page on his site). The posts are indicative of Vern’s penchant for injecting dry humor into his writing, even when discussing weighty topics such as flares, surgeries, abscesses, and treatment.
While much of his writing is light-hearted in its tone, Vern does not sweep such difficulties of life with Crohn’s under the rug. If you sift through the blog archives, you can see how Vern’s writing reflects the ups and downs of the last decade.
In addition to his writing, Vern exhibits his creative flair in the form of painting, a hobby he took up in 2010 as a form of therapy and to help relieve stress.
Leaving the Seat Down is an engaging blog that is doused in wit, and one through which the personality of its author is able to shine.

Natalie Hayden is a former TV news anchor who was diagnosed with Crohn’s disease in 2005, a decade before having an ileocolic resection and anastomosis.
The following year, in 2016, Natalie started her blog and soon announced she and her husband, Bobby, were expecting their first child. Their son, Reid, was born in March the following years and has since become a brother to Sophia.
Natalie has faithfully kept her blog throughout both pregnancies and as she has taken her first steps into motherhood.
That is not to say Lights, Camera, Crohn’s is only for mothers or mothers-to-be who live with IBD. While it certainly is a wonderful resource for anyone interested in learning more about parenthood, Natalie calls on many aspects of her life experience in writing her posts. Topics range from discussing apps that can help track symptoms of IBD to preparing for colonoscopies, and everything in between.
Natalie also invites guest bloggers to share their stories on her blog, giving it a diverse touch and making Lights, Camera, Crohn’s an excellent all-round blog about life with IBD.

Top IBD Blogs for Advocacy
The Internet has created a whole new range of opportunities for patient advocacy. These bloggers are helping make genuine changes to the lives of others living with IBD around the globe.

Tina Aswani Omprakash was diagnosed with Crohn’s in her early 20s. The disease derailed her legal career and has nearly claimed her life on several occasions. Tina has undergone over 20 surgeries in her battle with Crohn’s.
Tina’s blog is a little under a year old; she began writing it in March 2018, just under a decade after having her colon removed. Years of complications were to follow the surgery and it was not until 2016 that the word “remission” was contemplated.
She has since become a prominent patient advocate, working alongside organizations such as Crohn’s and Colitis Foundation of America and the United Ostomy Associations of America. Last year, Tina was named an Honored Hero by the Greater NYC Chapter of the Crohn’s & Colitis Foundation.
Her blog is the perfect way of keeping track of her advocacy work, most recently at the 2019 Crohn’s & Colitis Congress. Tina also writes insightful features focused on other patients and healthcare professionals, shares tips for those living with IBD and ostomies, and does her bit to raise awareness and tackle the stigma regarding such topics.

Colitis Ninja, Amber Elder, was diagnosed with ulcerative colitis in February 2011, six months before she was due to earn her black belt in karate. The name of her blog is not simply a reference to her training in the martial art, but to the notion that those living with the condition are “hard core fighters” who fight their battles in silence.
In the years following her diagnosis, Amber became familiar with the shame and embarrassment that many people living with IBD live with.
Amber started her blog in 2014, in the midst of a particularly severe flare and shortly before having her colon (‘Colin’, as she and her husband refer to it with ironic affection) removed. Although she began writing for therapeutic reasons, the more she connected with others living with IBD with whom she could relate, the more it became a medium for offering mutual support.
Her blog – adorned with her excellent ninja-themed cartoons – has also become a platform from which she is able to discuss topics that are still considered taboo, raise awareness, and help fight the stigma that caused her to feel so isolated in days gone by.
Amber has shared her story and words of wisdom across the web, helping in her mission to give a voice to those who fight IBD in silence.

Top IBD Blogs for Health & Fitness
The symptoms of IBD can make staying fit and healthy difficult, particularly during a flare. A healthy lifestyle, however, has been found to ease the symptoms of many people living with IBD. These bloggers share how they achieve health and fitness targets while living with IBD.

It is stating the obvious, given the name of the blog, that its author, Ali Feller, is a keen runner. In fact, Ali has run seven marathons since starting her blog in 2010. She also lives with Crohn’s disease. In order to complete the 2016 New York City Marathon, Ali had to overcome a flare-up in the months leading up to the race that significantly disrupted her training.
Whether Ali would make the start line, let alone the finish, was touch-and-go until the very last minute; her completion of the race was, in her words, “undoubtedly a personal best” in every way other than time.
Ali’s experiences will resonate not only with runners but many people who must surmount the challenges posed by IBD to reach health and fitness targets.
As well as the Ali on the Run, blog, Ali has hosted a podcast of the same name for the last two years. The podcast, which regularly features guests alongside Ali, is also heavily influenced by her passion for running and health in general.

Stephanie Gish had lived with signs of IBD for a couple of years before, in 2006, she experienced her first debilitating flare. It was only when antibiotics failed to help that she was referred to a gastroenterologist. Although Crohn’s was suspected following a colonoscopy, she was not diagnosed until 2009.
Since then, Stephanie has experimented with different diets and health regimes, gradually discovering what works for her and what does not.
Stephanie started her blog in 2017 as a way of documenting both the foods she has found to help with the symptoms of IBD, as well as fitness tips including 15 minutes-per-day workouts. She did so as a way of sharing her experiences and providing inspiration to others.
While Stephanie acknowledges that each case of IBD is unique, and that what works for her may not work for others, she provides as much information as possible so that anyone wishing to try her methods is able to do so.
Since the turn of the year, Stephanie has also kept an accompanying podcast that features other people living with IBD.

Top IBD Blogs for Travel
For many people living with chronic illnesses, the idea of traveling is accompanied by as much stress as excitement (if not more). If you are living with IBD, these travel blogs can provide not only a dose of inspiration, but practical tips for planning your journey.

Probe Around the Globe is first-and-foremost an excellent travel blog. Its author, Naomi, has traveled from her native home in the Netherlands to countries ranging from Turkey to Tibet and has a particular passion for travel by train.
Naomi’s photo-laden blog covers some of the world’s most iconic rail journeys, including the Orient Express, Himalayan Express, and Trans-Mongolian Railway. She has also made the most of the Netherland’s excellent location and travel network to explore the European continent.
She has done all of this while managing Crohn’s disease.
There are entries on her blog relating to Crohn’s disease specifically and chronic illnesses in general, in which Naomi shares the wisdom she has accrued throughout her time traveling.
Of course, the extent to which one is able to travel when living with Crohn’s disease varies from person to person and there is no one-size-fits-all solution. However, for those able and willing to travel, but looking for advice from someone who has been there and done it, Naomi’s words on Probe Around the Globe are certainly worth reading.

The Crohnie Traveler was diagnosed with Crohn’s disease at the age of 13.
Her travels have taken her to the likes of New Zealand, Scandinavia, and China, as well as a solo backpacking trip around Europe.
Throughout her years of travel, she has learned – sometimes the hard way – what is required when traveling with IBD. Via her blog, she imparts the wisdom she has accumulated to others living with IBD, covering topics such as packing, planning, and the importance of details like having paperwork for medications.
Two posts named ‘The Grit’ delve particularly deep into such details.
Given her travel experience, her blog is worthy of a visit for anybody living with IBD wanting to ensure they can manage their condition as well as possible while traveling.

Originally published by Dan Brown in My Therapy App’s Blog on March 14, 2019

Republished March 15, 2019 with permission from author

Many thanks to MyTherapyApp.com for including me among other great IBD advocates and Mr Brown for writing a great article. It all goes towards better awareness, understanding and erasing the stigma all IBD'ers feel everyday.     Thanks to all of my readers!!  ~Vern

Saturday, March 9, 2019

"Crohn's Disease Ate My Colon" - My story (Part One)

We all know that Crohn's Disease, Ulcerative Colitis and IBD in general, affects us all differently in one way or another. The common denominator is the disease itself, that's it. There are slight variations in symptoms and how it affects us, but we all deal with it in our own fashion.

Me? Well.... here's my story.

June 1988 is when I was finally diagnosed with Crohn's Disease, symptoms came suddenly just 6 months prior, I had just turned 20.  I was the two sport athlete, ate "normally", no family history of Crohn's or any IBD.

Not always a good thing to be first.

I was born in a small town in the interior of British Columbia. We moved a few times, finally settling in Surrey, BC, Canada. I think my childhood was about as normal as the next kid, father went to work every morning (he was a teacher) and my mum stayed at home watching us kids. I was a pretty active kid growing up, always outside or doing something. I was introduced to ice skating when I was 8 years old after my parents took us to a local skating event. We signed up for lessons soon afterwards and quickly discovered I had a knack for skating. One of the coaches took notice and I joined the figure skating club at 10 years old. I enjoyed the quietness of tracing figures on the ice, over and over and over again. I remember how calming it was after a day of school. I loved the freedom of the free skating, the jumps, spins, artistry... the falling wasn't pleasant but it was all part of learning, which I think I've taken with me throughout my life. If you fall, get up as quick as you can, brush it off and try again. Repeat.
By the time I was 12 I was rising though the ranks, placing and winning in competitions and enjoying skating. I was teased in school which was hard, but back then you had two choices, let it bring you down or do something about it. I chose to do something about it and one day after some on going teasing about being a male figure skater,  I hit him and got into a fight. It was quick, but I stood up for myself. Things changed after that and once some of them came to see me practice, they noticed I was the only guy among 25 girls on the ice.
My life changed a few years later when my dad left us. Just like that, no clue as to why, just left. He left us each a letter and once I read it, I threw it out. I don't remember today what it said, but I remember that it made me angry and changed me. I went from being the nice kid, to being the angry kid. It affected my skating and I ended up leaving the sport in 1985 after attending our Provincial Winter Games. I had been playing soccer for a few years at the same time and started to concentrate on playing as I could take my frustrations out on the pitch.
It is at this point in my life, I personally think, that maybe Crohn's started. Not necessarily any symptoms showing, but the anger, anxiety and keeping everything in, contributed to the Crohn's gene starting it's life. It might not be the reason, because there is no known cause yet, but for me, I think it's a contributing factor.
It's birth inside me so to speak, even though symptoms won't show for another 4 years.....

Next: Part Two

Friday, March 8, 2019

You Might Be A Crohnie

If reviewing your medical records takes more than a week
... you might be a Crohnie