About Me

Eric over Cape Town 2016

Random Facts:

  • I am Canadian, eh.
  • I was born October 18, 1980.
  • I’m left-handed.
  • I’ve been vegan since 2000. (That means I don’t eat, wear or use animal products)
  • Was diagnosed with Crohn’s Disease in 2008.
  • Had surgery for my permanent ileostomy on Aug 21, 2013.
  • Said bye to my rectum, Nov 7, 2013.
  • Became an “avid cyclist” in 2022 with a focus on endurance riding.

My name is Eric, and I was diagnosed with Crohn’s Disease in 2008 when I was 28 years old. My diagnosis came about a few days after my 28th birthday, and I had no idea how dramatically my life would change.

My first symptoms started in about 2007 with discomfort around my bum. Not pain, but a slight burning. After this went on for over a year, I decided to see my family doctor when the burning became intense.

She couldn’t tell me much from the brief physical exam she gave, other than she noticed the beginning of an abscess.  I was put on antibiotics and was given a referral to get a colonoscopy to see what was going on inside.

I had my scope done in early October 2008 and a few weeks later I was in to see the surgeon to find out what he saw – “It looks like you have Crohn’s Disease”.

What disease? I’d never heard of Crohn’s before, and I was asked if I had any trouble going to the bathroom or had abdominal pain. I shook my head, as I didn’t have anything like that – yet.

So I was sent home with a steroid enema and anti-inflammatory drugs to see if we could manage the pain. I started doing research and found people getting better with lifestyle changes.

At this point, I’d been vegan for about eight years, but I was a junk food vegan. My diet consisted of colas, beer, chips, some healthy food on the side, but I decided to change all that.

I went on a raw food (and gluten-free, grain-free, legume-free) diet for close to a year. It seemed to be working until about 4 months in when my symptoms came back with a vengeance.

Loose stools and stomach pains were becoming normal. I abandoned raw foods to go search for other options.

By the end of 2009, I was seeing a Naturopath, but my symptoms were getting worse. I had been getting more draining around my anus (fistulas), painful abscesses, more frequent bowel movement, and much more pain.  In spite of all that, I was still productive and functional.

We did a lot of unconventional stuff to see if something might help. Things like homeopathic remedies (which I now realize is just expensive water), dream analysis, a special diet, etc.

Things were better off and on, and I felt that perhaps I was healing inside. By this point, my only concern was the frequency of my bowel movements, which was about 11 times per day. Everything else was manageable as far as I could tell.

Someone had seen an ad in the paper for an IBD talk being given and a “natural cure” which could help. The talk was free, so I thought, “what the hell, let’s see what it is about”.

So I went to the talk, which was given by a Chiropractor who was giving case after case of people he “cured” using spinal manipulation. I was impressed and booked a visit to his office.

I was to go for “adjustments” 3–4 times a week, and in about 6 weeks I would be a new person. Well, I certainly was, but it wasn’t for the better!

Shortly after starting the therapy, I noticed pain in my thumbs. I mentioned this to the Chiropractor, who thought it might be a lack of protein (yeah, right). He advised me to increase my protein with some powders and see how that goes.

Well, things continued to get worse, and soon those thumb pains became hand pains, then wrist pains, then ankle, and foot pains. It got the point where I had to stop seeing him because I was unable to drive with all the pain!

Over the summer of 2010, I went through the worst flare I’ve had in the 5 years following my diagnosis, and my joints were screaming in pain.

The simple action of turning a doorknob or walking was unimaginable. I began to get sores in my mouth – 10+ at a time, and was barely able to speak. My stools were now liquid, often bloody and extremely urgent.

I had to use the bathroom 20+ times a day and every time I went, it would cause me to scream in agony. I stayed in bed for 3 months and hoped that I was either going to get better or dead. I dropped 40lbs and weighed 108lbs (I’m 5′ 10″ (1.78 m)).

I began to do more research and found another naturopath who said they could help. I was put on special supplements, and we did acupuncture, but they were of no use.

So I found a GI doc who specialized in holistic treatments. He was based in the US, so I did phone and email sessions while he prescribed his “99% effective” treatment plan.

This plan involved thousands of dollars worth of supplements. And believe me, he wanted to sell me everything under the stars!

Probiotics, prebiotics, gum mastic, licorice, special fiber, glucosamine, L-Glutamine, flax oil, S. Boulardii (another special probiotic). On top of that, I was put on an extremely bland diet of rice and skinned potatoes.

I likely spent about six months doing this before I gave up. The results weren’t there, and I had no money left for the expensive supplements.

It was Sept 2011 when I was off to see a specialist…

I was scoped again, and the results weren’t good: Severe colonic Crohn’s with perianal disease. We needed to medicate. I was upset and frustrated.

All these years, I tried to stay on a more natural approach to healing, but that didn’t help. Changing what I ate, taking supplements, doing meditation, none of it was making a dent in this disease that had hijacked my life.

Foolishly, I ignored recommendations to go on Remicade, one of the “Big Guns” in treating IBD, and I continued to suffer.

By the summer of 2012, my disease had been up and down again. Some days were barely manageable and others were spent in pain, but this became my normal.

To add to my troubles, I began to have frequent bouts of dry-heaving and would sometimes vomit the one meal I could manage to eat a day.

Things had to change, and the toll my disease was having on my wife and two kids were devastating. They were watching me die, and there was nothing they could do to help ease my suffering.

To give them a break, I moved in with my parents in Nov 2012, where I could be monitored more closely and have access to the digestive health association down the street from them.

I had blood tests done by my family doctor; the results were terrible. I was anemic from the bleeding and my inflammatory markers were through the roof. I was referred to another specialist, which would be the start of my recovery.

My first visit with him was tough. Walking from the car to his office door felt like a climb up Mount Everest. My anemia was so bad that my body was literally suffocating because not enough oxygen was able to circulate around.

When I stepped into his office, he was shocked. “I didn’t you know you were my patient. I thought you had terminal cancer. You look like a ghost”. I felt even worse…

He wasn’t gentle, but he told me what I needed to hear. “You won’t live to see your 40s if you continue like this”. And with that, he asked if I’d be interested in enrolling in a clinical trial.

I didn’t agree to anything just yet.

When we got back to the house, my heart dropped. If this is what I had to do, then I have no choice. We called the office the next day, and they got me ready to prepare for the trial.

Another scope was needed and a lot of paperwork was drawn up – questionnaires, consent forms, etc. We were approaching mid-December and I spent my holiday, including New Years, in bed – in pain, vomiting and unable to eat.

Soon after New Year’s 2013, I was put on the steroid Prednisone. For those who don’t know, Prednisone can do amazing things, but it’s also one of the most damaging drugs you can take for IBD.

I was about to find out just how bitter-sweet the next 8 weeks would be with it.

Within DAYS, I was feeling well. I was able to eat, and thanks to the monster appetite it causes, I was putting on weight fast.

Unfortunately, most of the weight you gain on this drug is water weight. Because of this, my vision was cut in half and my legs became stiff.

My face ballooned, and I had trouble walking now because of joint pains. Insomnia was terrible, and I often had the feeling of bugs crawling up my legs and arms – then came the mood swings.

I’ll be honest, the mood swings were the worst part. I’m sure the phrase “roid rage” came from someone on Prednisone because if there ever was a time to experience the Incredible Hulk, it was then.

I was taken off the drug, slowly, and by the time 8 weeks was up, my nails were peeling off… how nice. Next up: Humira.

I had been taking weekly shots of Humira, but my symptoms were returning. By July, I was ready for another scope.

Before going in, my doctor suggested that I may be able to get a temporary ileostomy to allow my gut to rest and my perianal disease to heal.

That thought quickly changed after the results of my colonoscopy came in – my disease was worse than expected. A temporary ileostomy was no longer an option, and there were no other medications that could reverse the damage that was already there. I had to seriously consider a permanent ileostomy.

My initial reaction to having a stoma was shock and disappointment, but to be honest, I couldn’t be upset by this point. I needed this in order to not only save my life, but to give me back some quality of life.

I expected a long wait to see a surgeon, but I was in the next week. I spent time online, feverishly looking for ostomy resources and trying to find out if my vegan lifestyle would be compromised because of it.

There were a lot of resources and blogs for ostomates, but none dealt with plant-based diets. I was frustrated, so I decided to create this blog.

On August 21st, 2013, I had my ileostomy done at Mount Sinai Hospital in Toronto, Ontario. My surgeon, Dr. Robin McLeod, and her team were AMAZING.

I had complete confidence in her knowledge, experience, and skills before I went in, and I can’t thank her enough for what she’s done for me.

My hospital stay was rough. My body doesn’t like the anaesthesia, and I was drowsy and “drunk” during my six-day stay at the hospital.

This feeling wouldn’t wear off for weeks after getting home, but my recovery was steady (other than a small hiccup when my incision opened up on my lower abdomen).

And here I am, waiting to have myI had my rectum removed Nov 7th, 2013, and I want nothing more but to share my experience and offer support to those who are about to get an ostomy or who already have one. I welcome everyone and hope that we can all share and learn together.

I’ve been invited to speak in three different countries to share my experience and knowledge about living with IBD and an ostomy, and I’ve been featured on various websites, magazines, newsletters, and events.

I’m married with two kids. We share a house with rescued animals. I love science and technology, roller coasters and hiking.

Thanks for stopping by!

Eric

Eric portrait presquile May 2014

120 thoughts on “About Me”

  1. Eric,

    As many on your followers will no doubt say, I too have suffered for years with IBD until an ileostomy was no longer an option but a requirement. Through your blog and helpful tips, I was more quickly able to adjust to having an ileostomy. In fact, I went from hating the damn thing to thanking God for giving me a quality of life again. I’m actually doing a lot better without that pesky colon. My life did a 180 after surgery and there are two surgeons I cannot thank enough for allowing me to live past my 23rd birthday.

    However, while in hospital, I experienced a trauma much worse than a total colectomy. A doctor who saw me before the need for emergency surgery was discovered raped me. I’m not sure why I’m telling you this…. I think it’s because I’ve had to repress it for so long until I could deal with physical recovery. But as a victim of childhood sexual trauma as well, I’m afraid the emotional recovery will be much more difficult.

    In any case, thank you for creating this blog. I doubt I would have been so positive about my operation had it not been for your wise words and experience.

    Thank you,

    Darla

    Reply
    • Darla,

      Firstly, thank you for having the courage to share this. I can’t imagine how hard that must be to live through that, but you did and I’m glad you’re here.

      I hope that your ostomy journey continues to be positive and I’m glad that you’ve adjusted to it so quickly!

      Reply
  2. Wow! What a ride you’ve been on – you say you enjoy roller coaster rides, but I bet this was one you were happy to have jumped off!
    I’m 56 this year and had a permanent ileostomy created in my 29th year on the planet. This was after 2 years suffering the steadily worsening effects of ulcerative colitis.
    Towards the end of the two years I knew where every public toilet was in my local town as well as the entire province we lived in!
    I have led a normal life since my surgery – I bred and broke in horses for years while the kids were growing up, farmed alongside my late husband, still ride my Harley and (in the summer) regularly cycle 30+ kms several times a week.
    I discovered whole food plant based eating in December last year and LOVE all the positive effects it has! Not only on my health, but for helping alleviate the plight of our fellow earthlings farmed for food, along with the environmental consequences of the industrialised processing of our food.
    (Yes, yes I used to be a farmer – but it’s never too late to have one’s eyes opened, aye…)
    One thing I’ve been trying to research (without much luck) is the effect of the removal of the colon on our microbiome. As the result of surgery, our second brain has in effect been removed. What a shock that must have been for the body the day after surgery!

    “Brain to Colon…do you read me?…over…”

    “Brain to Gut Microbes – are you receiving me? Is there anyone out there? Anyone at all….over”

    Sounds funny I know, but once you start researching the importance of the human mircrobiome you start to understand what an amazing symbiotic relationship we have with every component of our body. The colon microbes played a huge part in our immunity, hormone production, feeding of cells etc.
    I worry about whether or not we (as ileostomates) are now lacking in these vital microbes – do some still exist in the ileum? Have you done much research in this area?
    Sorry for the huge post – once I started I just couldn’t stop! 😅😅😅
    Kind Regards
    Lynne Hawkins, South Island, New Zealand

    Reply
    • Hi Lynne, thank for sharing that!

      I’ve actually asked several doctors about the impact that losing our colon has on our microbiome and none have had any concerns about it. Apparently, the bacteria that would have normally colonized in the colon simply set up shop somewhere else!

      I personally have not come across any research (or even anecdotes) to suggest that our immune system is compromised or that mental health has been impacted because of the loss or displacement of these healthy bacteria.

      It’s kind of ironic, actually… I would have expected a marked deterioration in a person who has an ostomy if our microbiome played such a crucial role, yet we simply don’t see that happening. But then again, perhaps our body (and those microbes) adapt so quickly that we don’t even notice any negative effects ;)

      Reply
  3. Eric, your whole story sounds exactly like my wife’s story,and she is still waiting for her surgery which we think will be shortly,i am her caregiver as her memory has failed considerably since she has taken ill.Anyway we think we have looked at all of your articles and we think they are great.Please keep up the great work you are doing. Alton and Bette MacAloney.

    Reply
  4. I just read about your medical issues. You are definitely a fighter and so brave! I am a three time colon cancer survivor and had a resection the first two surgeries. In October, 2017, my large intestine was removed and my small intestine was attached to my rectum. Two months later, I developed a fistula and bowel leakage. I consequently had surgery in January, 2018 and ended up with an ileostomy at age 78. I received little education on how to care for my stoma. I ended up back in the hospital after four days at home due to diarrhea and dehydration. I was moved to a rehab facility 12 days later. I was assured I would receive education and help with the care of my ileostomy while there. I received the promised education one and a half hours befote my discharge 13 days later although I asked daily for assistance in how to care for my stoma. I came home on home health care and a nurse came out four times. I know how to change my flange and bag, but I become so frustrated with the issues I encounter, such as pancaking, diarrhea, and loss of weight . I have looked for a local support group. However, the nearest group is 100 miles away. I am looking for an online group, but I am not vegan.

    Reply
    • Hi Sarah. Thanks for leaving that message. It’s a real shame that you had a negative experience with getting information about how to care for your ostomy – your experience is unfortunately quite common.

      Please feel free to join my community forums at http://www.veganostomy.ca/community/ you don’t have to be vegan and the discussions focus more on ostomy care and questions anyway :) We’ve got some friendly members who would love to read your story and answer any questions you might have.

      Reply
  5. Thanks so much for all your work for us! Very helpful. I have a temporary. Hooking me back up in August. Have serious pancaking. I just give up.

    Reply

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