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.

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!


Eric portrait presquile May 2014

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4 days ago

Hi Eric,
I had my ileostomy in August following a diagnosis of rectal cancer. It will be reversed at some point when I am strong enough for the surgery and when corona virus allows. I’m in the UK and under lock down at the moment.
When I was discharged from hospital there were no community nurses in my region (I had the op in a neighbouring hospital) to care for me so I was left to it and was pretty much in the dark. So with an open wound (severe sickness whilst in hospital had bust the stitches) and a stoma site so close that everything just leaked both ways, I soon became infected and a week after I came home was transported back to hospital. Once there I was put in isolation because I now had a superbug usually resident in the bowel but a problem if it gets into other places.I was given bags for herniated stoma patients which was another reason they kept falling off but without any advice I just thought that I was doing it all wrong. Only now, with the advice of the nurses in the hospital I had the surgery in do I feel like I am finally on the road to recovery.
Your story is inspirational and I will revisit regularly to boost me and not feel quite so alone. I found you whilst sitting drinking tea in the middle of the night after cleaning up a pancake burst and trying to calm down. It could have been worse but for my amazing sense of smell and being a light sleeper.
So, until my reversal, it is an unlikely relationship between me and ‘Stanley’ (the grandchilren have named it Stanley Stoma) who is unpredictable and, at times, downright rude. On a brighter note, the cancer was removed in it’s entirety leaving me with a third of my rectum to play with.
Thank you again for being here and giving us hope of normality or should I say, a new normality.

Sherry Telle
Sherry Telle
11 days ago

Thank you for all you do! I am 2 years out now, I had 5 emergency surgeries in 5 days, woke up with no colon and only 1/4 of my ileum, and had to be told what a stoma was when they told me I had one.Thankfully, I had no IBD or Crohns, mine was diverticulosis. I too was severly anaemic from internal bleeding, the (Canada too) surgeon I was to see let me sit for 4 months like that until my colon ruptured. I had a failed stoma site on my left and a new stoma with an open centre wound. 64 days in hospital I went home with a vac dressing that was so close to my stoma the wafer lifted constantly, home care was here in the middle of the night changing my dressing too many times. If it wasn’t for your videos I would have been a mess. I will not have a reversal I don’t have enough intestine left, you helped me live with this.

11 days ago

Thank you so much for sharing your story! I got my temporary ileostomy last week after suffering with Ulcerative Colitis for the past 12 years(I’m 23). Reading you story felt like reading my own. Like you, i tried everything from expensive not covered by OHIP naturopaths and chiropractors, special diets, all the medications, and vitamins before getting my surgery. I know I’m only a week in, but I feel better than I have in the past 12 years. I’m glad you’re finally feeling better!

29 days ago

Thanks for sharing your journey brother. A few months back I had emergency surgery from an abscess in my colon and kaboom I have a colostomy. Toughest time of my life. I watch your YouTube Channel and it’s a blessing. I’m getting better everyday 👍. PS: my wife is Canadian 🇨🇦

Carol Prieur
Carol Prieur
2 months ago

Eric, bless you! You’ve been through so much I too, am a permanent ileostomate It is from Lynch syndrome which is a genetic disease I was a vegan, taught yoga and everything else to avoid cancer No such luck I so badly want to go back to a plant based diet but am afraid of blockages I’ve been in the hospital because of some bad ones Any help and advice would be so appreciated

2 months ago

Hi Eric
14 weeks post surgery. Colostomy.
You have helped me so much. Thanks

Eve Grace
9 months ago

Hi Eric
Can’t thank you enough for your work. I’m in the UK. The stoma nurse told me you were vegan. Great. I’ve been veggie forever and vegan four years. Member Extinction Rebellion.
I’m 74. 48 years ago I broke my neck and got a spinal cord injury SCI paralysis and no sensation except pain armpits down. Bowel management involved a daily suppository, digital stimulation, manual evacuation, increasing pain and four to six hours a day. I could just about do it myself so I did, damaging wrist and elbow with RSI. Stayed away from doctors except I take methadone for the pain but don’t know if it helps.
Read about a woman with SCI and ileostomy, so two months ago went for it. SCI complications meant 2 weeks in hospital, but home now, coping alone, have more time, but in even more pain. Most days I get up, make and eat a meal and go back to bed. Audiobooks. Holding a book, typing etc. Is painful due to RSI. Don’t do much on-line, except XR, and failed (I think) even to register with your forums. Can this be my introduction? If anyone with SCI would like to talk to me I think I’m EvieG.
If any one reads this, my best wishes to you all. If I ever work out how to comment…
Well I guess I will.

9 months ago

Hi Eric. I was diagnosed with ulcerative colitis in 1995. I did an okay job of dealing with it for 25 years (I know every public bathroom in many, many states), but recent complications have led me to surgery. I’ve been reading your blogs and watching your videos since I was scheduled for proctocolectomy. Surgery was Dec 09, 2019. All is going well. Your videos and others like yours were helpful beyond measure. I’m not sure I would have accepted this new reality so readily without people like you who have sheared their stories. Thank you very much. I’m sure I’ll have lots of questions as I progress with my permanent ileostomy. It’s very comforting to have resources like these. I’m sorry your struggle with Crohn’s has been so difficult. I’m glad you are now healthy. Best wishes for your continued good health. You’re a strong person.

10 months ago

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

11 months ago

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!

Laura Weiner
Laura Weiner
1 year ago


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 Weiner
Laura Weiner
1 year ago
Reply to  VeganOstomy

Thanks! I am having some trouble becoming a member. Clicked the link in confirmation email; it took me back to square one…

1 year ago

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…..

Donnalynn Crozier
1 year ago

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.

2 years ago


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,


Lynne Hawkins
Lynne Hawkins
2 years ago

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

Bette MacAloney
2 years ago

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.

Sarah Johnson
Sarah Johnson
2 years ago

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.

Nancy Taylor
Nancy Taylor
2 years ago

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.

Karen Dickson
Karen Dickson
2 years ago

Eric, may I tell you a bit of my story. Will try to keep it short. I also went from doctor to doctor, but not with your same symptoms. I started having air – lots of it, escaping from my bladder. No one had a clue. Then, I met my urologist. He figured out what was going on, but wasn’t sure what to do about it. Turns out I had developed a fistula between my bowels and my bladder and my bowels were just beginning to release air through the opening. It soon became a nightmare. I’ve had IBS-D since I was a teenager, I’m 64 years old now. Well, the opening enlarged and enlarged, so with the IBS-D, my bowels began emptying through my bladder. And I had absolute zero control over it. It would be sudden, with no notice, and very forceful. I could not leave my home, I couldn’t even go outside, for fear of ,,, well, you know. I talked by phone to my family doctor who referred me to a general surgeon. Had to have some tests done, several tests. Finally, he told me I had to see a specialist who does colon surgery to repair the opening. Months of appointments went by with no help, because no one would work on a high risk patient like myself. I was in my fifties, overweight, and had already had a heart attack and congestive heart failure. Finally, I found this wonderful, wonderful doctor at MUSC Charleston, SC, Dr. Kerry Hammond, who told me that she would help me. Before the surgery, she told me that if she could not make the repair, she may have to do colostomy surgery. I was devastated, but I had no choice. When I woke up from the surgery, the first thing I did was to touch my abdomen…and it was there. I really was devastated then. I had to learn all about taking care of this new thing, called a “Stoma” and how to cut openings in wafers and put bags on. THIS was my new nightmare. I had never even heard of any of this before, nor anyone else I knew, and had no support. I lived 3 1/2 hours away from Charleston, in a much smaller town where I found there is not even a nurse available at the local hospital who knows about taking care of this new thing. Oh, how I wish I had found you then Eric!
AND unfortunately with the IBS-D continuing I had nothing but problems. I found that I was still confined to my home, because no matter what or who helped or what products I tried, they all leaked. After waiting months and months of check-ups at MUSC, I had begged my surgeon to consider reversal surgery, she explained the terrific high risk I would taking, as I’m even older now, she said it was up to me. I immediately said that I was willing to take the risk, let’s do it. I survived the surgery with flying colors and with that I’m great now.
However, now I’m going through practically the same nightmare, except now, it’s with my bladder control. The months of my bowels emptying through my bladder had ruined all the working of any bladder control whatsoever. There’s no control, no forewarning, and it’s not like when an older woman may sneeze or cough, no, So I am once again confined to home. I’m also permanently confined to a wheelchair now, due to knee replacement gone wrong and dislocated kneecap in my other leg, so my urologist tells me that due to that I am not a candidate for any surgery to repair that problem. And he has prescribed every single prescription drug he is aware of to help control the problem and now, none of those have been helping at all. So, I’m back to square one.
HOWEVER, now that I’ve “met” you, I know that I’m not alone…as well as the others who also write to you.
Also, I’m passing your website on to my Mom who is 91 years old and had to have emergency colostomy surgery 2 years ago. As a matter of fact, she is the reason I found your website. She’s developed a hernia at her stoma and I was doing some research on the internet when I came across your video on support belts for the ostomy bag, which I’m also suggesting to Mom. Your video was great. Eric, your story is heart-wrenching, what you went through, but man, you sure have it together now! From your photo you look great and healthy and happy. And I’m sure your family is too.
I hope you realize how wonderful it is that you are doing what you do for the thousands if people of all ages who gone through what you have gone through and like me, had no other support. Keep up the awesome work and if it’s okay, I’d still like to visit your website for some courage and hope.
Thanks so much Eric.
KarenD in South Carolina

3 years ago

Thanks for telling your story. As someone who had colitis for 13 years, I understand the struggle. I only just got my ileostomy 9 days ago and will be going for the j pouch. I also got my surgery at Mount Sinai in Toronto but it was from Dr. Helen MacRae. They are so great over there. Man, life is so much better getting rid of that disease!

3 years ago

Hi Eric,
I’m a colostomate 9 years years now, due to anal cancer diagnosed on my 45 birthday. I’m doing fine, living a full productive life. I mostly irrigate now, but on days I don’t I’ve been experiencing “pancaking” and the vacuuming effect since Conva Tec started putting filters in the pouch I was using. I had no idea other ostomates were dealing with these same issues until I happened to come across your site and video on the topic. Thank You for this site and sharing your experiences!
I also appreciated your video in the parking lot of the amusement park dealing with an unexpected leak. I’ve had leaks happen at the most inopportune times and had to retreat to my car to do an emergency clean-up and pouch change. Nice to know I’m not alone. You gave the best advice, keep calm and try to have a sense of humor about the situation because “shit happens” : )
Again, great site. You are providing a useful service to new and old ostomates.
Best Regards,

3 years ago

Want to thank you for a great resource and helpful site. I had an emergency colostomy after a perforated diverticulitis in December 2016. I am a nurse and had great resources from the hospital staff, but it was still very challenging and I had lots of questions that only someone who has ‘been there, done that’ can answer. I used your suggestions for swimming using a belly band, made my own seat belt protector after looking at the suggestions you gave, was helped with packing for a vacation across country, got thru a hospitalization for a complete bowel obstruction (while on that vacation 1000 miles from home!). So I really appreciated your ideas. I was blessed to have the colostomy reversed in June and am grateful to be doing well. Thank you again for your very helpful and caring site.

3 years ago

Thank you so much 4this.. Had ileostomy with full surgery in May and its been difficult. Came across your site yesterday and have to say it’s the best one yet 😊 I live in Ireland west and apart from the stoma nurse , there’s very little info/support. My biggest problem has been my back pain. Was in surgery over 6hrs woke up with terrible back pain which I now have physio for. Noticed in other forums that a lot of people have back problems afterwards.
Your info in the food has really helped and going keep you as my go to now when I need info. Ate a chocolate mousse on Friday night and boy did I suffer for few days 😊 really have to stick to the diet 😎
Find it hard.
Anyway thank you for your site

annette hillary
annette hillary
2 years ago
Reply to  mariek

I had the same back pain after my surgeries in 1992. I also had pain from adhesions. Was awful. I know a lot more now. By accident I found accupunture very helpful for me. Since 2016, I have been doing traditional chinese medicine and accupuncture. I did TCM before being diagnosed with Crohns. The accupuncture helps me with pain plus more. I’m on no medication. Only natural stuff. I do have some present challenges. But my point I wanted to share is accupuncture helps me with pain. Do your research first for an experience accupunturist (If you’re open to trying).

3 years ago

Susan Mills…I am also 63 but my ileostomy is only 2.5 years old. I have read LOTS of blogs, comments, etc trying to find someone else who has an ileostomy AND still has their rectum and anus as I do…so thanks so much for your story! Seems like most ileostomates have Barbie (or ken) butts. WELL NOW… I have reread your post and I’ll just bet yours is a colostomy since you still have some colon..anyway I’ve never been scoped. Currently I can eat anything as long as I chew chew chew. Anyway, I’m glad you found Eric online. I can’t imagine going through all this without his website!

Susan Mills
Susan Mills
3 years ago

I could have told your story 40 years ago, diagnosed when I was 22 and had my ileostomy 6 years later at 28. Still going strong at 63! I’ve been fairly healthy over the last 36 years with only a few bumps along the way. My PCP referred me to a gastroenterologist and he wants to scope me through the stoma which is what led me to look and see if there was anyone on the internet who has had that done because I’ve never had it done before. I was left with several inches of colon and my rectum, which in the last year or so has had frequent discharge so I’m actually thinking that it might be time to have it removed. Anyway, this site is now in my favorites and I will be back to read more!

Catherine cooney
3 years ago

You have gone through so much. I think it’s worse for crones symptoms. Although I’d been going to visit docs for about 3 years with a pain in my left groin I had trouble with bowels, constipated or loose. Doc said I had pulled muscle cos I did a lot of cycling, sit ups: 100 before work and jogging. But I had so much rumbling in my tummy and didn’t do much poo. I was finally diagnosed with bowel cancer they took out tumour I had 6 months of chemo and an ostomy bag fitted for twelve months that was then reversed.

3 years ago

Hi Eric… just wanted to let you know how grateful I am for the information you are sharing on this blog. I am four weeks post-surgery and learning to adjust to my permanent colostomy (due to rectal cancer). Knowing there is a supportive community is greatly comforting, especially now as I learn to live with my new reality. Thank you for your advice and information. PS I grew up in Toronto — Go Leafs Go!

3 years ago

Hi Eric

I found your site 2 days ago and I wasn’t going to read it as I am not a vegan. However, this is the best information that I have found since having a proctocolectomy and ileostomy 10 days ago. Your story is so similar to mine. I was diagnosed in 2013 at 57. I thought I had bowel cancer as my father had died 17 months prior of bowel cancer. Silly me was happy to get a Crohn’s diagnosis. Over the next 4 years I have sometimes wished it was cancer and I would have been cured! or at least in remission. The last 14 months have been the worse I have been, 4 hospital admissions, every new drug under the sun all to no avail. Finally, doctor said I’m not going out of the hospital without the operation, I wouldn’t make it. So from someone who wouldn’t take prednisone to having my colon removed and bum sewed up is quite a journey. I am so glad that I found your site. I am in Sydney Australia. And thank god for our health system, the bags and paraphernalia cost the patients nothing! just a society membership yearly. I am setting up a blog to chart my journey, nothing there yet, but it’s (link removed) when I get up and running.

4 years ago

Eric, I can’t tell you how ecstatic I am that I found your website. I had a colectomy and ileostomy a little over 2 months ago and have already had a blockage and stoma revision. I have been struggling to find a site like yours with so many great reviews and resources, especially concerning diet. I am sorry to report that I am a carnivore (especially since I wasn’t able to tolerate meat for years). I have been scared to introduce plant-based foods back into my diet, but after reading about your experience I am now willing to try. I have been doing much better in the last few weeks and have even returned to work full time. Thank you again for creating such a wonderful site. I plan to visit regularly. Best wishes, Helen

5 years ago

I am over the moon excited to have been introduced to your blog. I’m a new ostomate (surgery was August 13). Four months prior to surgery I had adopted a plant based diet which left me feeling incredible, but have since been told that isn’t possible to continue, as my stoma and gut need to rest and heal right now. The processed foods and meat are making me feel “gross”. I miss my veggies and I’m scared about transitioning back into that diet, for fear of the gas pain and obstruction. I look forward to reading and learning more on this blog!!!! Thank you so much :). Jenni-Rebecca

5 years ago

Thankyou so much much for setting up this site! I can’t tell you how much it has helped me as a fellow vegan after having an emergency ileostomy as a last resort.
The stoma nurses at the hospital are excellent but none of them even knew what ‘vegan’ meant so I was panicked when thinking about my diet. That’s when I found your site and found it very reassuring.
Thankyou again, Philippa

5 years ago

I am in awe of your struggle. I sincerely thank you from my soul to yours for your honesty and transparency in educating us through your example. Thank you. Thank you. Thank you.

Darren Bounds
Darren Bounds
6 years ago

Eric, great site and great shirt – “No colon…still rollin'”. It’s so helpful to see what you have tried, what has worked and what hasn’t worked.