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
My husband had to have a colostomy and was incomplete denial. He couldn’t cope – couldn’t even look at it. He just wanted to die. I had to take over for him. I trawled the internet for help and luckily came across your website. He is fine now but we couldn’t have have got through it without you. Thank you.
Barbara,
Thank you for helping him to get through the change. I’m sure it was difficult for you both, but I’m glad to hear that he’s back on track!
Be well,
Eric
Hi Eric
Many thanks 4 your blog. Am longtime ostomate now running into DEFECTIVE products. Wld like your thoughts on how to get action for such expensive items that don’t work properly. I am in US.
You seem to be more savvy than I. I’d just like some suggestions. Pls reply! Today, 4/1/22
This is no April fools joke☺️
Many thx,
Anita
STAY SAFE
Hi Anita,
I replied to your email :)
Thank You for running this resource Eric.
It is an enlightening experience to be able to read the Journies of Others.
I note that you tried to ‘research’ TIES and have shared some information in this connection .
I would very much like to connect with the Patients who, like myself, have had TIES implanted and explanted under Clinical Trial – I believe there to be 11 of us – 4 of whom were in the UK.
Hi Jayne,
Thank you for your message. Yes, TIES has been brought up a few times on the community forum, but I’m not aware of anyone who’s had it done – you are the first.
It would be amazing if you could share your experience on the forum, if you’re able to. I’m not sure if you’re allowed to if you’re still in the Clinical Trial.
Best to you!
Eric
I’m a brand new and absolutely clueless ostomate. “George” was born on December 28, 2021. Finding your site has been an absolute Godsend and your review of products, priceless! I do hope you see this because I cannot thank you enough for all the detail you put into your articles and you even did a Glossary! I’m currently in hospital with an obstruction and twisted intestine from my adhesions during surgery so I have plenty of time to read and learn. Bless you for everything you’ve given to all of us!
Megan
I’m glad you found the site, Megan! I hope all goes well and you recover quickly. Once you’re out of the hospital and have a chance to have some experience with caring for your stoma, I think you’ll find that it does get easier with time. Take care!
I am a 60 year old male.. I was first diagnosed with crohns disease when I was 21. It started as severe stomach pains and finally it felt like a acid Ballon had popped and⁵ was eating my hip bone and went to the emergency room. They ran every test that they had (back in 1982 that was not many). After 3 days of testing they finally said “sorry but we are going to just have to go in and do an exploratory surgery to look around”. Yes I knew at the age of 21 I was in deep shit if this is what It had come to. Remember no one at this hospital had any idea what was wrong with Me. I did find out later that at the time I was diagnosed with this disease less then 300,000 Americans had been diagnosed with this and medical doctors were not very well informed.
I soon became the educator of doctors that I would visit. Back to the surgery. After surgery I wake up in the intensive care unit with a tube emitting from my penis, one from my nose and a drain tube from my stomach. I was shave bald from my mid chest area to just above my knees. What I saw next damned near made me pass out. I saw 22 metal staples in my stomach and i was so shocked I really did almost pass out. While feeling this a dr came into the room and said to me. “Well we opened you up and found a foot of your intestine eaten away, your appendix was destroyed and part of your terminal ileum had to be removed. We thought you had cancer but we froze it and it was not cancer. We think it may be Crohns Disease but we’re not sure so we have a gastro dr coming in tomorrow to see you from the nearby army hospital”. WOW. That is alot of information for a 21 year old kid all alone in a hospital in Central Texas. I promise you the next this that happened is the absolute truth. After the dr walked out a priest walked into my room. I immediately told him to get the hell out of my room.
The next day the visiting gastro dr came in and he said “hi, well you do have Crohns Disease and there is not a cure for it and there is no known cause for it but we think it is happening to people who work in high stress Jobs”. I said ” doc give it to me straight, what is the up shot of all of this? …The dr looked at me and said ” son this will kill you and on top of that you could have to wear a bag on your hip for when you go to the bathroom”. I thought to myself, “that will not happen to me.. I thought about what he said about the stress and At the time I was working as a Correctional Officer for the Texas Prison system so yeah that could be right. So after 2 weeks in the hospital and major surgery they discharged me. But being 21 and invincible I did not go home. I went to the club with my friend drinking and dancing and celebrating being out of the hospital. Believe or not I have lived most of my life very very lucky with very few problems. Now over the last 5 year I had a few bouts with intestinal blockage and it was always the same treatment. 3 days in the hospital om IVs only then I was discharged to go home and back to my life. I had been taking prednisone and Flagyl and pentasa for years. Fast forward to May 1st 2021. I began having extreme pain that it was unbearable and every time I took a breath my right shoulder hurt like hell. We have 2 hospitals in the town. A private hospital and a county hospital. I went to the private hospital and told the lady at the desk that I have Crohns and that I think I had a severe intestinal blockage. She told me to sit in the waiting room and they would see Me.. I sat in the waiting room for an hour and a half, running to the bathroom to puke bile every 10 minute. I was all alone. No I mean it…I was really all alone. There was not one other person in the waiting room with me. After an hour and a half of the misery and the pain I walked back up to the desk, yet I don’t know how. I swear I was about to pass out the worst pain I 3ver felt.
When I got back to the desk I told the lady “ma’am, I think i am critical” .the lady behind the desk promptly told me that the people in the emergency room were critical and that I needed to sit back down and wait. I got to my car somehow and drove myself home and called 911 to have an ambulance come and get me and take me to the county hospital. I remember the ambulance ride being very very painful as every bump in the road made me literally cry. They put me to sleep on May 1st 2021 and woke me up on May 11th 2021 to tell me that I was going to surgery. I remember nothing for 10 days. I came out of surgery only to find that the dr had decided it was best him to leave me a souvenir of his and my time together. He left me the one thing I promised myself that I would refuse to live with. A bag on my stomach. I lay there and I thought to myself I cannot believe this has happened to me
I thought “my career is over, I won’t be able to work, I am going to lose my car and my house and my whole life”. The next day they took out the NG tube from my nose and the dr declared I could have whatever I wanted to eat. Food was the last thing of on my mind. Immediately everything I put in I threw up. The dr decided he better have a cat scan of my stomach done. So the first surgeon that worked on me ordered the scans. After the scans were done about 6pm that might another surgeon came to my room and said “we got your CTS scan back and your have lesions and blockage and we are going back in” . I said “were doing surgery tomorrow morning?. The surgeon said to me “No, were doing surgery tonight, your bowel is dying as we speak”. For the second time in my life I though to myself ” I really am in deep shit”.
So they took me back to surgery and did whatever they did. They brought me back to my room and i was in pain. I thought about this damn bag again, i thought to myself how I could never again do the job I love to do all my life. I thought about the loss of my home and my car and my material possessions which seemed important. I thought if I did not have a job then I would have no medical insurance and all these promise of a reversal made by the 1st surgeon was just bullshit anyway. Someone at the hospital, I heard had told my daughter to make final arrangements because I most likely was not going to go home. Between all of the confusion and the lack of information about a ilesotomy and what you can expect along with the sever pain I was just really tired of all of it. I caved and confided to a nurse that I needed to get out of the hospital so I could go home and go in the back yard and blow my head off. He looked at me and said “oh no, my dad has one of those and he is a farmer and there is nothing you cannot do while you have a ilesotomy bag. I told him that he and I both knew that was bullshit. This male nurse looked at me and put his hand on mine and said “no that is not bullshit”. The next day I spoke to my girlfriend on the phone and I pulled the same pity party speech on her and she told me “oh no we are gonna do like we always do and we are going to get thru this”. When she said those words to Me the most comforting came over me like I never felt before. I mean it really gave me the hope that I did not have before. In fact before she said those words to me I did not care if I ever left the hospital.
To make a story even longer, sorry folks. I had some complications before going home and ended up staying in the hospital. In fact I will do well NOT communicated with by the medical staff at the hospital I knew I would be discharged to home but I was under the impression that they went in and “repaired” my bowel and disconnected me to a Ilesotomy and they it would be reversible in about 3 months and this was done to allow my bowel to heal properly. I did learn one thing. When hospital staff think you are a dying patient they do alot of whispering around you and very little talking directly to you. I guess it is their way from getting attached to a 59 year old man who is dying. The day before I was to get out another person from the hospital staff and told me that I had lost 40 lbs in 30 days, my muscles had atrophied and they my room air wad well below the minimum and they I would need to go to a nursing home for about a month for rehab. I told her that was bullshit and to get me a ride home.
They sent me home with a walker and oxygen tank and schedule a person from rehab to come by the next day and start working with me on getting stronger. They also had a home health care nurse come in to teach me how to care for myself and my new souvenir. My girlfriend who had not seen me in 30 days due to the COVID 19 restrictions in place, immediately came over and took one look at me and began to cry and said “oh my God what did they do to you” I told her “I finally they tried to kill me”. I thought to myself for the third time in my life “yes you are so far on deep shit”. My girlfriend said to me “no one had been here for a month so go lay down and i will clean your house”. I told her no that I need to clean the house. I told her that if I lay down I will die and that I would need to do everything on my own to stay alive and get my strength back.
For 3 months I bought myself some 10 lb weights for exercising my arms, ankle weights for getting the strength back in my legs. After 3 weeks I had told my home health care nurse that I no longer needed her. Which by the way I will always be thankful and grateful to her because she really cared about me as a patient and I was not just another stop on her lists of daily stops.
So after 3 months of pure agony and dealing with defeat. I was finally got strong enough to go back to doing the job I love as a Police Officer.
Yes I have done more internet reading and have watched the vegan ostomy channel so much that Eric problem has a protective order our on me for staking him. I have learned about other police officer in my same situation. What I thought was bullshit became reality.
It has been 7 months and no reversal yet. I have found out in the past week that I have been on remicade for about 6 months now and my Crohns is still running rampant and out of control.
By the way I finally did find that they had removed 4.2 feet of my colon and intestine. I was a little surprised find this out after I was discharged. I remember asking the surgeon how much did you take out and all he kept saying was “it was a bunch”. He did not even know.
If you took the time to read this thank you and I promise nothing in this story had been exaggerated or embellished as it is true as it happend.
Have a great day folks. On my way to dump my you know what you know where