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
Hi Eric, I had ileostomy 6 weeks ago,it’s o right side
My size underneath flange is 39, how do I order awstomy wrap and does any body sends free samples
Hello, Rasheed. Depending on where you live, you can either order ostomy wraps directly from the manufacturer or through a medical supplier. I have a list of companies that offer wraps here: https://www.veganostomy.ca/ostomy-clothing-manufacturers/
Unlike with regular ostomy supplies, no company offers free samples for accessories. I should also note that the company Awestomy seems to be out of business, so consider another brand.
You’re awesome, Eric!!! Thank you for sharing your story and taking the time to educate us all on ostomy products. My father has been diagnosed with terminal cancer and is adjusting to life with a stoma and colostomy bag. Because of you, I now know what I can purchase that might help him feel more comfortable. Much gratitude for you and all that you do!
Vanessa, I’m glad you found the website and I hope that it continues to help during this difficult time in your life.
Eric!
YOU are a BLESSING!! Thank you for this website! I have been unwell for a little over a year, increasingly depressed as a result, and today, this is a bright light coming through.
This community you have created is an important one, and your story is a good one. I am so pleased that you have chosen to share your knowledge and support with other “ostomates” (new word for me!)
I began to get sick a little over a year ago, with what I thought was IBS. In retrospect, I am sure there was always an element of IBS, but there was much more going on in my abdomen as well! My Mother was sick at the time and in and out of rehab, so I was busy with that and tried to manage my symptoms with dietary changes according to my symptoms. After six to eight months, I had given up all gluten, simple sugars, dairy, red meat, and hard liquor… but symptoms continued: lots of abdominal discomfort, frequent bloating and explosive output. I am diabetic, too, and my insulin dosing needed a lot of whittling down over these months. Surprisingly, I had lost only a little weight.
During this time, thankfully, my mother did recuperate from her illnesses and was able to go home and stay with my father in their independent living facility.
One night in early January I had an insulin reaction due to my extreme dietary changes. I passed out and hit my head on the coffee table. My son found me unconscious and called EMS. There was a gash on the back of my head from the blow that needed attention; after some convincing, I agreed to go to the hospital. The head wound was treated with ease, but bloodwork done on site revealed my kidneys were not working as expected.
The next few weeks were filled with tests. I was terrified that the diabetes had ravaged my kidneys and I was headed for dialysis for life! Lady Fortuna smiled upon me in that hour, however. The extensive testing revealed I had tumors in my abdomen, and one of them was obstructing outflow of the kidney, causing the abnormal lab results. I know that tumors and cancer sound horrible, but as a 30+ year nurse, I have seen what kidney failure does! It is not a good look and, barring transplant, there is no cure. Cancer is at least treatable.. I only knew that I did not want a colostomy!
Most of the masses in my abdomen were centered around female reproductive system according to the scans, so I booked an appointment with a GYN-oncology surgeon that I know. I will add now that Dr. Marcela del Carmen, my surgeon is an angel! She saved my life. But, the wait time to see her was about 10 days… During that time I became increasingly ill. The pain became unbearable, and I had to stop taking solid food all together. On the day of my visit to the surgeon, I was immediately admitted to Massachusetts General Hospital and scheduled for surgery the next day.
The operation, while a “success”, was long (7 hours) and difficult (two liter blood loss and many transfusions). I awoke in the intensive care unit. Tubes were coming from everywhere, and I felt I had been run over by a truck! My doctor explained that, in additon to the blocked ureter, I also had tumors in my bladder and two bowel obstructions, necessitating a colostomy. All I could think or say was, “shitbag”…
Within a couple days the pathology reports came back. What was originally thought to be ovarian cancer was actually Non-Hodgkin’s lymphoma. I was unaware at the time, but this was great news! Lymphoma is one of the most treatable cancers. Ovarian cancer is not. And I was told that the colostomy would not be permanent! And that once the cancer was treated properly, and I had some time to heal, it could be reversed!
Dealing with the colostomy was daunting, but I managed. I had some problems with pancaking and some explosions here and there, but changing diet and keeping vigilant made things easier. Chemo was far worse! I spent about five months in and out of the hospital frequently, as I had complications with fevers and low blood counts. I thanked the Gods many times for my power port (I STILL do)!! There were times when I felt angry and times I became super depressed. There were days I wanted to stop all treatment because it seemed more suffering than death would be.But I pushed through it. I knew (I prayed) that eventually I would get through it. Family and friends were an enormous help during this time.
Unfortunately, Mom got sick again in the Spring, but the chemo was nearly finished. Another hospitalization for her.. and another stay in rehab.. By now I was accustomed to the colostomy and, with chemo nearly finished, I could see light at the end of the tunnel. My surgery was booked for August 6!
My hair was already growing back by the time I went in for the colostomy reversal. I was made aware that I might need a “temporary ileostomy”, but after all I had been through, I just didn’t want to think about that possibility. I also had NO idea how different an ileostomy is, compared with colostomy! Boy did I have another thing coming!!
The second surgery was not nearly as long or intense as the first. It lasted only four hours and there was little blood loss. However, due to the scar tissue left in my belly, my surgeon thought it wisest to divert the gut through an ileostomy to allow the anastamosis time to heal. I was told, “It’s just for eight weeks”. I was mildly disappointed. Sadly, during this hospitalization, my Mom passed away. I know she was suffering and is now in a better place, but this contributes to my stress level and state of mind, I am sure..
That was 5 1/2 weeks ago… and I do have an ileostomy reversal booked five weeks from now. For that I am grateful. But, I have had SO MANY complications with the ileostomy it is hard to find my gratitude on many days!
I have short bowel syndrome and my output is so high that I need IV fluids at home (at least a liter a day). The power port is a huge relief with this issue! No amount of medicine or dietary change has effected the liquid consistency, or amount, of the output. I empty round the clock, often rousing from sleep 3-4 times per night with a full bag. Frequently I awaken marinating in my own juices! It is demoralizing to start the day in this fashion. My washing machine has never seen so much action in the way of soiled linens and clothing! I rarely leave the house and, when I do, it is not for long. I carry extra suppiles always, but dread a leak having to be managed in a public toilet! Whilst managing appliance changes, my stoma likes to spit everywhere!
Today, on your boards, I have learned how to manage some of my problems and I THANK YOU so much for creating this forum! It is good to know there is help available and I am not alone! You and this group have helped my find some gratitude today! BLESSINGS!
Laura
Laura, thank you for sharing your story. I’m sorry for your loss – that had to be hard on you.
I’m glad you found the forums and hope you make use of it as new challenges come up.
Thanks! I am having some trouble becoming a member. Clicked the link in confirmation email; it took me back to square one…
Hi Laura, there should be no confirmation email for the forums, but there is one for the newsletter signup.
Try again here : https://www.veganostomy.ca/community/?wpforo=signup
Email me if you continue to have trouble at veganostomy@gmail.com
Hello……I am still a newbie compared to you all. I have diverticulitis……had a bowl blockage, was septic, dehydrated @ had a rectal-vag bleed.
First colostomy surgery I was told I would have a reversal in 6 months….those 6 months was just leaks, frustration and tears…….my surgeon than changed his tune, “may be able ” to reverse it……went out of my area, to a major hospital, Henry Ford in Detroit…….well now I’m a permanent colostomy, she was able to slightly improve my innie stoma. I appreciate VO because I have had very little support since my surgery….
Just learning as I go along, these tips, and suggestions, are so valuable. More pictures would be helpful …….what stoma skin and the skin under the wafer looks like.
I think I had a partial blockage once, it was scarey, I tried his suggestion of massage, I was not cautioned this might happen…that is what I’m talking about from my stoma nurse or surgeon……
Thanks again I have more reading to do. And to find out I have a kindship with others. I feel so isolated……homebound….afraid I will embarrass myself…..
Sue, thanks for writing. The online community for people living with an ostomy is huge, so please don’t feel as if you are isolated – you just have to find us :)
II am so sorry you & your family had to go they such a terrible time when you were so sick.
I feel a great kinship with you as I too had a roller coaster of events I. My life with Crohns. (I don’t think I was diagnosed right) I have had an ileostomy for 33 years & I was single & 23 years old. Try having a bag & dating but I did it & I finally met the one when I was 30. The surgeon did a butcher job on me & he basically left me to die in hospital At this point it had been almost 5 months in hospital. My only recourse because of the surgeries he did on me was to remove my large bowel & have an ostomy done. I had no idea what that was. My first thoughts were how do I go out with this thing hanging off me. They said they would send someone who had one in to talk to me & they did. She had grey hair & was wearing polyester pants. All I could think of is “my life is over”. Well it was not. Later I would go to speak to women who were about have an ostomy done. All I wanted was to show people that life does not end & no one would know you had it unless you told them. Yes having it sucks but I also got my life back because like you I just got sicker & sicker & I did prednisone for 2 years. That was a big no no & I have dentures because it rotted my teeth & my joints hurt everywhere but I still live. I later learned that the surgeon did something to my reproductive organs & I was not able to have kids. That was ok though because I didn’t really want them & my husband had two kids & he didn’t want anymore. My point with this is that all surgeons & doctors are not created equal.
Now I have fistula that tunnel all over the butt & I have vaginal holes. Doctors can’t tell me why that is & it is very very frustrating but I still keep going. IBD sucks!!! but I refuse to let it consume me.
I love what you are doing & what you are about. I found out about you from the ET nurse that saw me today because I am having leaks just past 24 hours after changing it. I don’t know what is going on but just about 2 hours after he left I had a leak.
I am not sure where to go from here. I was getting 6 days wear time before & I am soooo sick of leaks & messes that just piss me off. I don’t have time for this.
Thanks for doing what you do & I will continue to follow your blog.
What a story, Donnalynn! Thank you for sharing that, and I’m glad you’re still pushing through the challenges.
You may want to post an introduction and any questions you may have on my community forum. There are many out there who share a similar story and we are all working to help each other get through these obstacles. http://www.veganostomy.ca/community
Take care!