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 Blogs 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.
Jenni’s Guts
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.
SoBadAss.Me
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.Meis well worth subscribing to.
Leaving the Seat Down
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.
Lights, Camera, Crohn’s
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.
Own Your Crohn’s
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
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.
Ali on the Run
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.
Crohn’s, Fitness, Food, and My Rocky Road to Health
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
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.
Crohnie Travel
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: https://www.mytherapyapp.com/blog/top-ibd-blogs
Republished with permission on March 15, 2019
~~As always, thank you for your readership and for all the love and support. These are the things that keep me advocating for better care for all of us with IBD and/or an ostomy. Lots of love, hugs and good wishes for good health always~~
One Comment
Leanne Merrett (the secret diary of a crohns girl
Hi,
I suffer terribly with chronic crohns and peri anal disease and of late it was really effecting my mental health!! So I decided to write it all down and I’m finding it’s really helping me with my mental health and maybe it could help others too?
I try to capture the humour in this awful disease please if you have time have a read of my blog entitled: the secret diary of a crohns girl
Any feedback would be much appreciated
Regards
Leanne