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
