Crohn’s Week: Those I’ve Met Along the Way

When I was first diagnosed with Crohn’s, I knew one other person with IBD and that was Lori. I didn’t really know the entire story (as she had been diagnosed quite some time before) but she was the extent of my Crohn-ie connections. Since being diagnosed, I have had the pleasure of connecting with so many others whose lives have been affected by IBD.

I found out from my grandmother that I have two great-aunts and one second cousin with either Crohn’s or Colitis. Many people have confided that they have dads, sisters, cousins or friends who are also affected; Through the blog world I have met so many beautiful people to share stories of poop and Peglyte with. I wanted to share some of their stories with you to spread awareness as to how many people this disease touches as well as give you a sense of how it affects each of us differently.

I found Andy’s IBD awareness site through a Crohn’s forum. He was looking for people to share their stories and I happily sent mine along. Andy was diagnosed with Crohn’s in September 2008. He had been experiencing major stomach pains in the last few months of university, which for a long time he attributed to heavy drinking. The stomach pain continued even after the drinking stopped and then his appetite decreased. After talking to his GP about his symptoms, he collapsed the following day and was rushed to the hospital and put on heavy painkillers. It took the medical team 2 months to determine that Andy had Crohn’s.

Andy was initially put on steroids, but reacted badly to them, making emergency surgery his only available option. He would later have two more surgeries to resolve a blockage and split bowel and to ultimately reverse his temporary ileostomy. Andy was recovering from his third surgery when he sent his questionnaire back to me and said that he felt encouraged that his life was slowly coming back together.

“Even when your body is in its weakest hour, never take for granted your imagination.”

One of the scary things about IBD is that it is often misdiagnosed, which was the case with Marie-Claire. After suffering from constant cramping stomach pains and blood in her stools, her doctor told her that she had haemorrhoids. She continued to be in pain for more than a year, when she ended up in the hospital after fainting due to loss of blood. Marie Claire said,

“I think I have always been prone to the development of this disease, however I believe the actual trigger was stress related as I started experiencing symptoms after my father and both my grandparents died within 6 months of each other. It was a bad year.”

Marie-Claire went on to be diagnosed by a second doctor with Ulcerative Colitis. A year went by and she didn’t feel any better. She eventually landed in the hospital in dire need of a blood transfusion where the doctors even told her mother that she might not make it. It was during this episode that Marie-Claire found a GI who changed her life. This GI was the first to agree that her condition could not be diagnosed as either Crohn’s or Colitis as well as recognize that food and environment are aggravating factors in the disease.

When Marie Claire was in the hospital for the blood transfusion, the only option that was presented to her was surgery to remove her entire colon. She refused and opted for the strongest drugs they could give her including prednisone & cyclosporine. She has been on and off steroid-based treatments for years and is currently managing her disease through a combination of self-awareness, Imuran and supplements with a healthy dose of exercise and positivity. As a result she has been in remission for two years. When I asked if she told people that she had IBD she responded by saying,

“Yes. After having about 15 colonoscopies (I have at least 2 a year) and running to the bathroom holding my butt countless of times, I have no shame.”

Love that girl!

Speaking of love, how stunning is Jessica Grossman?

Uncover Ostomy is the brainchild of Jessica and the IDEAS group.

Jessica was diagnosed with Crohn’s Disease at the tender age of 9 after having stomach pain, decreased appetite, and frequent trips to the washroom for more than a year. Her disease stabilized for a couple of years until she got the flu when she was 11, which caused her to be sick for 2 years. For a long time she followed her doctor’s advice and took her medication as prescribed by her doctor. She also tried an organic diet without sugar, flour or dairy which she found to be very limiting.

In 2003 Jessica opted to have surgery to remove her colon and some of her small intestine and now has an ileostomy. As a result of the surgery she is symptom-free, pain free, eats as she pleases and is able to thrive as a university student and vice president of her sorority.

Uncover Ostomy started as a project in her grade 12 media studies class. Jessica said,

“Our final project was to create a PR campaign for an NPO. I picked the United Ostomy Association of Canada. I created and advertisement of myself covered in a sheet exposing my ostomy. The summer after the project I went to camp ostomy camp where I met up with a volunteer I had met at camp before named Rob. He was the founder of IDEAS [Intestinal Education and Awareness Society]. I showed him my advertisements and he said he really like them and wanted to use them for his organization. After 3 years of working out the kinks, we finally had a contract and a plan for me to fly to Vancouver to create a new version of the ad for his organization. And that’s how we got Uncover Ostomy. “

I think it’s an amazing campaign and hope that it continues to raise even more awareness and help others to feel more comfortable with their ostomies. Clearly an ostomy isn’t stopping Jessica from doing anything!!

I’ve found some other pretty amazing gals (who happen to have Crohn’s) in the blogsphere. Back in March, I started reading Kris Carr’s blog CrazySexyLife on a day when they happened to feature a guest post by Lauren. We’ve since become friends through comments and emails and I’m feel so lucky to be able to connect with another young woman who is taking a similar approach to her healing. After many different medications and various doctors, she has found a promising new gastro and is feeling generally healthy. In her questionnaire she said,

“Crohn’s has made my life better. I enjoy every second that I am feeling well. I am so happy with the way that I eat now and how I handle stress and emotions.  Before Crohn’s I would let everything bother me. Now I roll with the punches and eat my veggies!!”

I’ve also connected with 2 Meg(h)ans.

Megan (no h) writes a blog called the Gut Gazette. For three years her doctor and naturopath told her that she probably had IBS while suffering from diarrhea, loose bowel movements, extreme stomach pain, stomach discomfort 24/7, weight loss, fatigue, canker sores in her mouth and iron deficiency. She was finally diagnosed with Crohn’s and began a few different treatments. She currently relies on a combination of traditional medicine, holistic treatments and supplements to help her feel good. She said she is feeling about 75% better but still experiences flare ups/extreme pain about once a month.

“Live well, laugh often, love much.”

And then there’s Meghan. I actually discovered Meghan through Lauren’s guest post in March. Her comment intrigued me and I ended up treating myself to a series of cooking classes and became an avid reader of her blog. Meghan’s story of achieving great health, as documented in her e-book The Healthy Cookie is incredibly inspiring. I quoted the following passage of her book in my review back in August,

"We must take our health into our own hands, do our own research and despite what is considered the norm in our society, we should consider our diet and lifestyle first, put natural remedies before chemical treatments and choose needles before knives."

This has been my approach to my Crohn’s and as a result I feel fantastic. I can’t say enough, how blessed I am to have met this amazing woman. She has inspired and supported me in ways that go far beyond food & Crohn’s and I’m so happy that our cyber-paths crossed last spring.

In Canada alone, there are said to be more than 200,000 people with IBD, the highest reported prevalence in the world. These are just a few of the hundreds of thousands of people who have been directly affected by IBD. Reading their responses to my questionnaire was thought-provoking and inspiring and reiterated for me that I am definitely not alone. I look forward to feeling inspired by each of them as they travel onwards in their journeys.

I want to say a huge thank you to Andy, Marie-Claire, Jessica, Lauren, Megan & Meghan for their bravery in allowing me to share their stories with you in my continued attempt to raise further awareness of IBD.

For more information of my journey with Crohn’s Disease, please read instalments 1, 2, 3 and 4 of my Crohn’s Week posts.

For more information about IBD, please visit the
Crohn’s & Colitis Foundation of Canada website.

For more information on Jessica’s campaign, please visit the
Uncover Ostomy website.

To read more of Meghan’s story of healing, be sure to check out her
e-book, The Healthy Cookie.