Its World IBD Day today so since it’s Saturday and every living creature with an appetite is out hunting down new prey, I’m going to celebrate the day for the whole week.
I’m biased, of course. I’ve been living with Crohn’s disease for over 31 years. It’s one of the family of nasty Inflammatory Bowel Diseases, (yes, Bowel diseases) that includes Ulcerative Colitis, but does not include IBS, or Irritable Bowel Syndrome (more on that in another post).
Since its such a gross topic (bowel disease, you can only imagine) I’ll skip the details of my experience and go straight to highlighting those individuals who have shared with us some remarkable stories. You’ll see the index below to get you started and every day this week you’ll see some of these stories and individuals highlighted on our home page.
Trust me. It takes a little bit of courage to talk about your toilet habits in public. It can be funny, but these folks aren’t getting paid to entertain a crowd at a comedy club. What they are doing is breaking down the stigma attached to these illnesses, and in so doing, are changing the world one story at a time.
Bravo to these articulate souls. We’ve got award winning author Jon Reiner, mountain climber Rob Hill, prominent advocate Michele Hepburn, Ben from across the pond in the UK, and many others in writing and video. Feel free to add your story to theirs.
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Why we think IBD should be considered a Chronic Illness
Published on Nov 25, 2013 Elliott and Rob from Gut Inspired, a group of Canadians living with Inflammatory Bowel Disease (IBD; Crohn's Disease and ulcerative colitis) talk about why IBD should be considered a 'chronic illness'. When living with IBD, understanding and support are incredibly important. Imagine a world where you don't have to explain what living with IBD is like because your friends, family and employers already know, where the government sees digestive disease as a priority and where people experiencing IBD symptoms are identified and diagnosed right away. We think this is possible if you keep taking the Read More…
Tagged Under: chronic illness, gut inspired, ibd -
Happily Ever After My Diagnosis
On December 15th, 2009, I was matched up on eHarmony with a man named David (for the SECOND time - long story, I'll explain later!!!). Being tired of waiting for the men to make the first move and message me first, I sent him my initial questions. I was a little surprised when he responded, but he did and shortly after that (January 23rd of 2010 to be exact) we started dating. About a year later, in January of 2011, the symptoms started. It began with diarrhea and rapidly advanced to severe rectal bleeding. I told David that I was Read More…
Tagged Under: Colitis Ninja, ibd, relationships, ulcerative colitis -
Am I addicted?
Posted on December 2, 2013 Since being diagnosed over 6 years ago I have become very blasé about “popping” pills. There have been times in my treatment when I have been taking 12 pills before I had even had my morning wash. I guess I tried to be as ignorant as possible to what I was taking in a blind hope that they would offer some relief from my Crohn’s Disease symptoms. No matter what my ailment, there always seemed to be an extra pill that could be taken. Even now that I am more educated to what the medications Read More…
Tagged Under: addiction, Crohn's, ibd, Me And My Crohns -
Bowel transplant patient experience
Michael Seres talks about his bowel transplant experience relating it to how and why patients need to be part of the decision making process. He speaks to surgeons, clinicians and doctors at the Intestinal Transplant Symposium held in Oxford in June 2013. Follow Michael on Twitter @mjseres Or his blog Being A Patient Isn't Easy More from Michael Seres Read More…
Tagged Under: bowel transplant, Crohn's, ibd, michael seres, Oxford, recovery, Transplant Symposium, UK -
A Partner In Crohn’s
Posted: 22 Jun 2013 11:37 AM PDT I talk to many people throughout my life that suffer with an IBD, either through Twitter (@MrAwesomeBen), my blog or my local Crohn’s and Colitis UK (Leicestershire & Rutland) charity. These people have become a cruck for me to rely on. They know, pretty much, what I am going through. These people, some of whom are complete strangers, people who I would not recognise if I passed them in the street, are there for me and vice-versa. I bang on about not suffering alone, especially in this modern era of the internet where Read More…
Tagged Under: caregiver, Crohn's, ibd, Me And My Crohns, spouse -
Fighting Crohn’s Disease on a Tandem
Posted: 08 Apr 2013 05:52 AM PDT Hello to all my Crohnies old and new. I am sat writing this latest blog while slightly spaced out on pain killers, home off work due to my silly tummy and even sillier IBD. Over the weekend I helped celebrate my wife’s Grandma’s 90th birthday. This celebration included a lot of party food and subsequently led to a rather upset bowel. Yesterday saw me struggle with diarrhoea which I tried to control with loperamide tablets (Imodium) then during the night I had really bad cramps which meant I didn’t sleep well and had Read More…
Tagged Under: Crohn's, ibd, Me And My Crohns, stigma, stubborn, tandem -
Stubborn Head, Stubborn Bowel
Posted: 02 Jan 2013 10:36 AM PST I don’t know about you but I really don’t like giving up. I have always been stubborn but ever since my Crohn’s diagnosis I think I have become even more stubborn. I think I lie more too, nothing grand just little white lies about how well I am. These lies are not to mislead others; they are aimed at misleading myself. If I tell myself I am well enough to do something then most of the time I will do it. My stubbornness and self lies get me through most situations. I’m not Read More…
Tagged Under: Crohn's, ibd, Me And My Crohns, stigma, stubborn, sympathy -
I Have Crohn’s Disease
Mike says: ‘Since being diagnosed with Crohn’s Disease in 2007, I’ve pilgrimaged, like so many others, on that long road toward the Mecca of consistent bowel health. So far, I’ve found the way to be not-so-difficult. I’m fortunate. Good doctor, relatively mild case. Still, what a frustrating, inexplicable disease Crohn’s can be! Embarrassing, slapdash, specific in its unspecificity. And that the origins of Crohn’s remain a mystery (i.e. we know what it *is*, just not *why* it is), a mystery even as more and more people seem to be “coming down” with a case, can tend one toward paranoid Read More…
Tagged Under: comics, Crohn's, graphic, graphic novel, ibd -
Girls-With-Guts: Megan’s Story
When the Little Things Make a Big Difference My college campus wasn’t very big. It only took 10 minutes to walk across the entire thing, and less to go from class to class. But even so, I remember running out of one class to use the nearest bathroom, and walking, defeated, to the next building for my next class, just to have that dreaded feeling of urgency hit again. Junior year of college was one of the hardest times I have had in dealing with my IBD. I had been diagnosed just two years prior, and I had had it for long Read More…
Tagged Under: Girls-With-Guts, ibd, nutrition, perseverance, sick and studious, support -
Michael Seres @11.38pm
Friday, 7 October 2011 Well we just got the call that a bowel has become available and we are now on route to oxford. It really is the most nerve racking thing you could ever wish to happen. My wife and I just didn't know what to say to each other when the call came. They have told me so far that my estimated surgery time is 7am as they have to retrieve the bowel. Also they cannot give the final go ahead until they see the bowel. I will keep you posted as to what happens. Am currently on Read More…
Tagged Under: bowel transplant, Crohn's, family, ibd, michael seres, UK -
Michael Seres – Wed 21st Dec @ 3.49pm
(Editor's Note: This is Michael's first blog since the transplant). So let me recap about life from my perspective since 8th October. Somehow I seem to have blogged a day after my op from intensive care. In truth I have absolutely no memory of doing that at all. In fact I have no real recollection of the first few days post transplant at all. Obviously I have been told all about the care given to me and the team that looked after me but I feel terrible because I don't even remember who did what. My last memory before the Read More…
Tagged Under: bowel transplant, Crohn's, ibd, michael seres, recovery, torch, UK -
The Man Who Couldn’t Eat
By Jon Reiner This feels so illicit. And stupid. But really, I must lick this french fry. I'm not asking to eat it, mind you, that wouldn't be good. I just want to lick it. Taste its salt. I cower in the kitchen, hiding from my wife and boys, who are out there, on the other side of the door, enjoying a sumptuous dinner, like eaters do — devouring what's delicious, picking at what is not, saving room for dessert — while I starve. Yes, I'm starving. There's been nothing for two months now. No food, no drink, nothing in Read More…
Tagged Under: Crohn's, eating, family, food, gut, ibd, Jon Reiner, NPO, patient story, relationships, TPN -
Emergency Supplies
22 Apr 2012 Whenever I head out, I try and make sure I have my essentials. As I have explained before, as an IBD sufferer you always have to be prepared. A night out on the town is no different; in fact it probably needs a little more planning especially if you intend to have an alcoholic drink or two. Alcohol does have an effect on my body and that can make me a little tense and apprehensive. I probably shouldn’t drink alcohol but there are so many things my Crohn’s Disease stops me from enjoying, so alcohol, even with Read More…
Tagged Under: alcohol, Crohn's, drinking, ibd, Me And My Crohns, preparation, stress, support, toilet paper -
Growing up with Crohn’s
Published on May 8, 2012 by SCDPat My life prior to being diagnosed with Crohn's Disease and how I managed while growing up. Symptoms, diagnosis and treatments. Read More…
Tagged Under: child, Crohn's, diet, ibd, SCD -
Gut Inspired: Rob on being an advocate
Published on Apr 18, 2012 by GutInspired Rob Hill is a member of Gut Inspired, living with Inflammatory Bowel Disease (IBD; Crohn's Disease). He is sharing more about his experiences advocating for himself and others as well as actively managing his disease with his health care team. Rob knows the importance of communication and can better manage his symptoms because works together with specialists he trusts. Rob Hill works with the Intestinal Disease, Education and Awareness Society (IDEAS) raising awareness and sharing his experiences through Gut Inspired. Please share this video with others who may live with IBD and encourage Read More…
Tagged Under: advocacy, advocate, Crohn's, gutinspired, ibd, IDEAS, ostomy, patient story, Rob Hill -
Michele is Gut Inspired
Published by GutInspired on Jun 27, 2011 Gut Inspired is a group of Canadians living with Crohn's disease and ulcerative colitis who have joined forces to increase the awareness of inflammatory bowel disease (IBD) in Canada, offer support for individuals living with IBD and provide personal experiences to assist others living with IBD learn how to better manage their disease. Read More…
Tagged Under: 3c foundation, advocacy, Crohn's, gutinspired, ibd, XX -
Rob Hill Climbs Mountains
In 1994, Rob was a fit, healthy 23-year-old, an amateur runner and athlete. Until that time, he had never really been sick. He didn’t even have a regular doctor. When the illness started, it progressed rapidly. Daily diarrhea. Sustained stomach cramps. The diagnosis was Crohn’s disease, an inflammatory condition of the digestive tract. It got worse, and his weight plummeted from 185 to 105 pounds. After a year and a half, it became clear that his large intestine, his colon, needed to be removed. Not long after surgery, Rob started getting active again, running and eventually competing. In his lowest Read More…
Tagged Under: Crohn's, ibd, IDEAS, mountain climbing, No Guts Know Glory, ostomy, Rob Hill -
My Life, My Colon and Me – Liz’s Story
A documentary following the life of an Ulcerative Colitis sufferer. Read More…
Tagged Under: carer, colitis, ibd, pouch, pride, stigma, stoma, ulcerative colitis -
TEDxEast – Ari Meisel Takes on Crohn’s Disease
May 9, 2011 Ari Meisel trains his body to conquer Crohn's disease. Read More…
Tagged Under: Crohn's, diet, exercise, ibd, patient, patient story, TED, tedx, yoga -
E-Patient Video Profile for Medicine X
I am extremely floored to be the profiled e-patient in this six-minute video on peer-to-peer healthcare. Larry Chu, MD, the organizer of Stanford Medicine X hired a very talented videographer (Theo Rigby) to shadow me for a day and interview me. I talked about what it has been like to live with Crohn's Disease, and how I was inspired to build Crohnology to connect patients with it so we can find new medical discoveries. - Sean Ahrens Read More…
Tagged Under: chronology, colitis, Crohn's, data, ibd, patient, patient story, peer to peer -
A Major Victory Over Crohn’s Disease
By Julie Kalivretenos July 5, 2010 It’s been a week since the big GREAT news! As I start the day this morning I can still hardly believe this new reality, feeling as if I’ve dropped a 500 pound burden off of my back. I have so much to say I can hardly keep it structured in paragraphs, much less a single blog post! Over seven years after being diagnosed with Crohn’s disease, the greatest thing that could ever come from the recent tests I’ve undergone this past week is that it is officially in remission! In fact, no Crohn’s was Read More…
Tagged Under: Crohn's, healing, ibd, patient, patient story, raw food, remission -
Too Much Information
May 15, 2011 Do you ever forget where the “Too much information” line is? I spend so much time around other Crohnies, close friends and family that I forget what is acceptable in everyday conversation. The regular guy in the street doesn’t really want to know about my bowel movements. When someone asks me a question with regards to Crohn’s, I plough straight in. Quite often describing many of the symptoms, side effects and affected areas of my body. I don’t seem to blush with embarrassment anymore. Does this mean I’m comfortable talking about bums? When I meet new people Read More…
Tagged Under: Crohn's, embarassment, ibd, identity, loo, Me And My Crohns, patient, patient story, scars, sharing, story, toilet, UK -
Rubber Side Down
What began as an idea became a challenge. From a challenge, a commitment was forged. With a commitment, anything is possible. It is an epic Canadian adventure best summed up in three words: Coast. To. Coast. Spanning over three months in the summer of 2008, two amateur cyclists would attempt to pedal 8,000 kilometers from Victoria, British Colombia to St. John's, Newfoundland, in an effort to shed light on Crohn’s Disease and ulcerative colitis - tragic bowel diseases that are in dire need of a voice. What they discovered will astound you. Experience a film that depicts the vastness of Read More…
Tagged Under: crohn's disease, cycling, ibd, patient, patient story, sport, ulcerative colitis -
My Crohn’s disease and my ileostomy
This is the story of my Crohn's disease and my ileostomy. I hope it will help you. Read More…
Tagged Under: crohn's disease, ibd, ileostomy, patient, patient story -
How Remicade Infusion Pow-Wows Are Empowering Patients
Crohn's and Colitis are isolating conditions. Because they are invisible illnesses, it's impossible for a patient to walk down the street and identify another. As a result, we patients are disconnected from each other by default. To be connected to other patients, it takes conscious effort. Friendships in real life are created by people being put into situations that allow them ample time to get to know others socially -- for example, you meet someone at work, at school, or at a party. Patients with Crohn's & Colitis don't have a natural setting for this sort of socialization. As a Read More…
Tagged Under: colitis, Crohn's, empowered patient, ibd, infliximab, patient, patient story, remicade, social media -
Mike McCready’s Life with Crohn’s
As lead guitarist for Pearl Jam, Mike McCready has lived the charmed life of a rock star for a long time, or so it seemed to fans. But rock star status couldn't change the fact that Mike was also living the life of a Crohn's disease patient. More than once, a Crohn's attack forced him to run off stage in the middle of a concert in a desperate search for a bathroom. In a HealthTalk interview with Rick Turner, Mike shares his good and bad moments with Crohn’s disease and offers advice, encouragement and a lot of heart to others Read More…
Tagged Under: celebrity, chronic, compliance, Crohn's, ibd, mike mccready, patient, patient story, pearl jam