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’s it’s 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″).
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 sometimes would 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 40’s 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 Years 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 anesthesia, 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!