Thursday, August 15, 2019

What CAN You Eat?

We all get this question.
You know, when you go to someones house for dinner, they ask you what you can eat, or can't. Frankly it's not that easy to answer.
My answer always is, "Everything" and that gets me strange looks because they know that's not true.
It's just easier than trying to explain the foods that:

1. cause me problems
2. sometimes cause me problems
3. don't cause any problems
4. I outright avoid.

Easy right? Sometimes I will just eat whatever is put in front of me and pay for it later...though, I don't do that very often. I'll even tell them not to make something special for me, I will eat what you make, but will leave on my plate what I would normally avoid.  I hate making people feel THEY need to make changes for me. It's not fair to them.

So, I'm going to try and make a list of items of things I can and cannot eat. This is tailored for me and will be different for you. This also changes on "bad" days such as a flare.

DRINKS

I try and stick to just water because it's the easiest, BUT, I drink Brita filtered water. I cannot drink water straight from the tap, it's causes problems for me, I've been using Brita for almost 30 years now.
I avoid soda, but do drink it occasionally, because of the sugar and causes bloating. If I drink it at a restaurant, I ask for no ice (ice is usually made from tap water) and I know I'm heading home afterwards as I try to avoid public washrooms.
Fruit juices are also out.
I drink coffee and tea occasionally, but with coffee, only brewed coffee and not instant. With 1 teaspoon sugar and no milk or cream.
Milk is a straight "nope". Way too many problems drinking milk, even lactose free milk.
Alcohol is also a no go. I will have a small glass of white wine at Christmas and that's it. I do miss drinking long island iced tea though...

VEGETABLES

I ALWAYS avoid "gaseous" vegetables like, onions, cauliflower, cabbage, broccoli, asparagus, etc.
I also ALWAYS avoid all raw vegetables. They can cause blockages in the intestine because of strictures. I once was hospitalized from eating raw carrots...never doing that again, it was a very bad experience, throwing up every 5-10 minutes.
I avoid leafy green vegetables such as lettuce, spinach, kale, etc. You know....the ones you're suppose to eat. LOL
Any vegetable needs to be cooked down so it's soft.
My normal vegetables are cooked carrots, corn, potatoes or squash. I will have cucumber, with the rind cut off.

MEAT

This one is fairly easy.... chicken, fish, pork or hamburger.
The only problems I've ever had with meat is with steak. It's too hard to break down, in me anyway.

DAIRY

I try very hard to avoid milk or some milk products like ice cream, cream cheese, cream, cottage cheese, sour cream, whipped cream, etc.
Though, I CAN have yogurt, some cheeses (mainly hard cheddar's) and frozen yogurt.
When I was a baby, I could not drink cow's milk and was brought up on goat's milk. I outgrew it and did drink cow's milk (loved chocolate milk) as I was in soccer and figure skating, but when I was diagnosed with Crohn's, it caused wayyyy to many problems, even Lactose free milk. So I avoid it all together.

GRAINS

I try and avoid grains, not easy but I stick to white or sourdough bread. But I can tolerate instant oatmeal. The good healthy grains like whole wheat etc, has too much fiber.
I do my best to avoid fiber as it causes me to go to the bathroom because of lack of large intestine.

FRUIT

Basically.... banana's. Everything else has fiber. Berry's have seeds and other fruit have a skin that contains the fiber. So the safe bet are banana's

NUTS AND SEEDS

And that's a firm NO

It's hard to list everything, but I highly recommend to keep a food/drink journal. It was very helpful when I was first diagnosed.
I kept track of the time I ate or drank, what I ate or drank, when I went to the bathroom and type of bowel movement (watery, semi formed, etc.), as well as if there was gas or blood.

A food journal is a must, especially for the newly diagnosed.


Wednesday, August 7, 2019

Crohnie Quote of the Day

The following quote has to do with all chronic illness sufferers, no matter what the disease.
We are all told that we "are strong", or that we are "the strongest people they know" which is great, but we all don't feel that way sometimes. Then I heard this quote...

"People want to have something positive to say. They want to tell you how strong you are and how you need to fight. But, they don't know how hard it is and how you basically never feel strong.
But you deal with all this awful stuff and you feel helpless, sad, but you keep trying"

I don't know who said it or wrote it, but it's true.

Sunday, August 4, 2019

You Might Be A Crohnie....

If you get excited when you have a "semi formed" bowel movement
.... you might be a Crohnie

Friday, July 26, 2019

Are Clinical Trials Necessary?

The simple answer?  Yes.

First of all, what ARE "clinical trials" anyway? Again, simply put, is where people volunteer for tests to help researchers investigate new treatments for a wide variety of diseases or medical conditions.
They could be looking for how people respond to a new drug or maybe the side effects.
It also could be they are comparing existing drugs to new factors in a patients life. Clinical trials cover a wide variety of situations from new drugs or vaccines, or maybe surgical or even behavioral changes.

The World Health Organization (WHO) defines a clinical trial as:

any research study that prospectively assigns human participants or groups of humans to one or more health-related interventions to evaluate the effects on health outcomes’ 

Think of where we would be without trials. Without the volunteers. Animals, labs and computer simulations can only go so far. Nothing compares to testing with the human body itself.
Imagine diseases or conditions like, heart disease, cancer, alzheimers, parkinsons or crohns/colitis WITHOUT those clinical trials. More people are alive today, or living better lives, not only because of those scientists and researchers working hard behind the scenes to bring new treatments forward, but also those volunteering for clinical trials.



Let's take me for example. I am currently on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patients weight.
So I'm at about 10 mg/kg because I have an ongoing problem with fistulating peri anal disease.

I remember back in early 2000/2001, my gastroenterologist telling me about Remicade and asking if I wanted to be part of possible clinical trials. After discussing in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, eventhough my doctor said that from what she'd heard and read, the drug looked promising. I was worried about possible side effects, but that was 20 years ago.

In hindsight, I wish I had taken her advice and done it. I eventually made the decision to get the Remicade infusions many years later. I've now been on Remicade for over 7 years now and it's been a "god send", for me. I regret my decision 19 years ago. I could have been part of the initial study and had the benefits from it earlier.

Researchers and scientists are constantly trying to improve life for crohn's/colitis sufferers. Whether that be with improving on current treatments or coming up with new ones. Clinical trials are happening all the time. Your doctor would know of any current trials going on or coming up but also search your country's crohn's and colitis foundations. Many will have links on their websites to pre screening. You might get declined, but it just means you dont meet their criteria, don't let this discourage you. I've been declined numerous times for various reasons.

The more patients who are willing to participate in clinical trials, the better the research



Monday, July 22, 2019

You Might Be A Crohnie

If your gut talks to you so loud, it's like having another person in the room with you
.... you might be a Crohnie

Friday, July 19, 2019

You Might Be A Crohnie

If you can be through pain, fatigue, dehydration, bloating and overall "unwellness" and still look like nothing is going on
.... you might be a Crohnie

Tuesday, July 16, 2019

WEGO Health Awards

I'm honored and humbled to have been nominated for this years WEGO Health Awards and endorsements are now open.
If you have liked, enjoyed, laughed or have been informed from reading my blog, please feel free to endorse me here:

https://awards.wegohealth.com/nominees/142

I have been nominated for Best in Show: Blog and Hilarious Patient Leader.


But if not me, then maybe endorse one of the other health activists/leaders listed

Thank you and good luck to all !!



Wednesday, July 10, 2019

You Might Be A Crohnie

If after you check in to your hotel room, you notice there are ONLY two rolls of toilet paper
... you might be a Crohnie

Tuesday, July 2, 2019

You Might Be A Crohnie

If you have come up a form of "toilet yoga" just to find a comfortable position while going
....you might be a Crohnie

Saturday, June 29, 2019

Saturday, June 22, 2019

Crohnie Quote of the Day

I don't look sick...

                              You don't look stupid...

... looks can be deceiving

Wednesday, June 5, 2019

Remicade : Day 2507

Infusion #61 turned out to be a little more eventful than normal.

I was switched from 400 mg, which I have been on since 2012, to 600 mg for my last 3 infusions.
Now, for this infusion, my doctor raised my dosage to 800 mg and we're going to see how that goes to help my peri anal disease (fistulating). New research has shown doses of 1000 mg of Remicade has helped with fistulas so we're slowly raising my dose to get to that point.
So what made this infusion different than all the others? Well, let's start with my arrival to the clinic. I pulled into the parking lot with 5 RCMP vehicles spread throughout. One at each entrance and 3 in front of my clinic lights flashing. Of course my first thought was, "ah crap, the clinic better not be closed". It was an interesting site. No one in the cars, but lights flashing and cars running. Luckily the clinic was open but no one knew what was going on. There's a bank in the complex, so maybe it was robbed...who knows. That was event number 1.
Event number 2 was happy and sad at the same time.
When I get to the clinic, I have my blood pressure and temp taken followed by checking my weight.

Blood pressure - good
Temperature - good
Weight - ummmmmm....... I think the scale's broken.

The read out said 83.9 kg (185 lbs, 13 stone) I first thought, that can't be right. The nurse said to try it again. Yep, same the second time. She asked why I thought it was wrong and I asked her to check my last infusion weight. She goes "Oh, what have you been eating?"
I was 77.9 kg (171 lbs, 12 stone) just 6 weeks ago, but I haven't changed my diet...other than eating jujubes...since then. I know I didn't eat 14 lbs of jujubes!!

So... "happy" I'm gaining weight and "sad" I'm gaining weight.

During my infusion I thought over and over what I did different....nothing. So the only thing I can think is, the change in my dosage from 400 to 600 mg helped immensely in how my bowels are absorbing nutrients now. Now, I'm at 800 mg and if this keeps up, I'm going to have to go on a diet for the first time in my 51 years.


(.... and give up jujubes)

Monday, May 27, 2019

Remicade (Infliximab) Levels

Have you ever known what your Remicade "levels" were? Precisely they're called the

Infliximab trough concentration levels

Now, to be honest, I never knew what these were, only that I have heard my specialist talk about my Remicade levels and how they are fine. I get blood work every now and then to check them to make sure I even have some.
But not until today, when I went to my semi yearly visit to my specialist did I understand what they were. She was telling me that she wanted to raise my dose to 800 up from 600 every six weeks to try and combat my lingering peri anal disease. She went on to tell me that my Remicade levels had dropped to 2 ug/mL (microgram/milliliter) from 3.
Which basically is the lowest level the Remicade has reached before I get my next dose.
Ideally the target level should be between 3 and 7 ug/mL, that's the target at least.
What scared me a little was the fact that she wants my levels to reach 10. But if the highest range is 7...what the hell is 10?! She went on to tell me that new research has shown that peri anal disease does well with levels to 10 ug/mL.
In my case, the Dr thinks my levels were maintaining above 3 because I was taking Imuran (azathioprine). But for the past few months, I've been weening off of it so, she is raising my dose of Remicade instead.

First dose at 800 is next week.

Well... let's see what happens, shall we.

Fingers crossed.

Saturday, May 25, 2019

You Might Be A Crohnie

If you know you're gaining weight, simply because your thighs are now touching
.... you might be a Crohnie

Thursday, May 16, 2019

Crohnie Facts Of The Day

Crohn's Disease is SOOOO much more than just a "pooping" disease.
It can also lead to problems with:

Abscess's
Fissures
Fistula's
Malnutrition
Strictures
Arthritis
Bone loss
Vitamin deficiencies
Skin
Eye's
Kidney's
Liver
Development

Not to mention the mental health problems associated with some, if not all, of these.



Thursday, May 2, 2019

You Might Be A Crohnie

If you have discovered that there are multiple ways to sit on a toilet
...you might be a Crohnie

Wednesday, May 1, 2019

"Crohn's Disease Ate My Colon" - My story (Part Three)

What the hell is Crohn's Disease?

You can't imagine what it's like to be diagnosed with a chronic illness, no cause, no cure and to be an illness that involves your bowels. So embarrassing. I had to look up what the fuck Crohn's Disease was, which meant having to physically go to the library and even then, there wasn't much on the shelves.

The Internet wasn't invented, smartphones wouldn't be here for years, so I couldn't just sit down and search the world wide web to find out about Crohn's. No social media or online support groups like there is now. Everyone around me had no idea what Crohn's was nor had they ever heard of it.
So, or course, I immediately went to "what the hell did I do, to get it in the first place"? I remember racking my brain over and over on what I might have done in my life that would cause me to get sick. I looked through as many books as I could find, was it something I ate?, something I did as a kid maybe? You see, I rarely got sick growing up, so the prospect of now living with a disease that I couldn't get rid of or know how I got it in the first place, just devastated me.

What I was able to discover was that Crohn's Disease is an inflammatory bowel disease that can affect anywhere in the digestive tract from the mouth to the anus. Basically, the immune system attacks the digestive tract thinking it's a foreign body, usually at the end of the small intestine where the small and large intestines meet (as in my case). Why? Good question.
It's a chronic condition, which essentially means I will have it the rest of my life. There will be times of remission and times of flare ups, but it will be on going and last forever. Or until a cure is found.
Where symptoms are concerned, mine were sudden, one day I was fine, next day I had pain coming from my abdomen, followed by frequent diarrhea, fatigue, loss of appetite and weight loss.
Causes..??  No one knows for sure, but genetics are a factor as well as the environment, bacteria or stress. The main problem, I think, is that no one knows what the trigger is. There has to be something that happens in the body that tricks the brain into thinking your intestines are a foreign body and starts attacking it. Not everyone gets it, so what is the trigger?

And of course, everyone's experience with Crohn's or Colitis is different. So everyone's treatment and meds will be different. Mine began with 1000 mg of Salazopyrin (Sulphasalazine) and 40 mg of Prednisone. Remicade (Infliximab) in my case, won't be around for another 10-15 years.

And so began my journey into the world of doctors, specialists, nurses, anesthetist's, surgeon's, clinic's, hospital's, and much much more.

I was still only 20 years old....

Coming up.....Part Four

Thursday, April 25, 2019

Thank you !!

I know I haven't been posting alot this month, but my health has not been good for the past few weeks. I have been dehydrated and now have a cold. But with a simple cold AND dehydrated AND have Crohn's, it knocks you down.
I wanted to say THANKS!! to everyone that has visited my blog. I noticed that it has reached over 250,000 views.
I am always thankful to everyone that comes by, also humbled by all the fantastic comments and emails I receive.  There are many of us out there that need help, support and reassurance.
I will be posting more about my "Crohns Disease Ate My Colon" series soon.

Thanks again to everyone !!

~Vern

Sunday, April 14, 2019

You Might Be A Crohnie

If you can drink water, the equivalent to the size of Lake Michigan, every day, and STILL be dehydrated
...you might be a Crohnie

.

Tuesday, March 19, 2019

"Crohn's Disease Ate My Colon" - My story (Part Two)

Diagnosis

Everyone's journey through the IBD diagnosis tunnel is different.
Everyone's trip down the IBD symptom slide is different.
But the common thread for all of us, is IBD itself, whether that be Crohn's or Colitis.

For me, I was finally diagnosed in June 1988 but symptoms started December '87/January '88 soon after returning from a trip to England for my Nan's funeral.
One morning I got up, showered, shaved had breakfast and laid on the couch to watch the news before work as usual. I worked as a retail manager in a large department store chain. Nothing out of the ordinary, but that was the last time my life would be "ordinary".
As I watched the news I started to feel something in my throat, like a gas bubble. I kept swallowing and swallowing to try and get it to move but to no avail. I made a cup of tea to see if that would help and it did....sort of. As I drank, I could feel it move down my throat, into my chest and into my stomach, then the feeling I had to go to the washroom and the sudden urge to have a bowl movement. And that's where and when the pain started.
Just like that.
No inclination of a problem. Nothing leading up to it. No signs. Nothing.

I was 19 years old.

Made appointment with my doctor and he thought it was unusual but went right to testing for a parasite as I had just returned from a trip abroad. Had the usual blood work and added fecal testing. Everything showed up negative of course but the pain now was more and more frequent and soon I started to eat less and less. The fetal position was now common for me. Laying on my bed, curled up, waiting for the "pain train" as I called it, to pass. I could feel the pain coming like an oncoming train, it would peak and then fade away, like the train had passed on to it's destination. I saw two other doctors in the same office when my doctor didn't know what he was dealing with and those two did the exact same tests. Now I have pain, diarrhea and blood all the time and the weight is dropping. Not sure if its from what's happening to me or it's because I'm not eating as much. Every time I ate, pain would soon follow, so why eat if it's going to hurt me.
So far, three doctors are still convinced I picked up some parasite while in the UK. By now, my clothes were hanging on me and I was pulling the belt on my pants so tight, I had to make more holes for the clasp. Keep in mind, this is 1988, there was no internet to "Google" my symptoms. I was at a loss and getting frustrated, angry and sad all at the same time. There was no history in my family.
I started my "IBD journey" at a very healthy and athletic 170 lbs (77 kg / 12 stone). I was a soccer player and a competitive figure skater prior to that. Never was sick. Ever.
I was now around 150 lbs (68 kg / 10 stone)

It's now May/June 1988.
It was the last doctor in the same office that figured it out, just on the symptoms and test results alone. "I think you have Crohn's Disease," he said, "you are showing the same symptoms as another patient of mine that was just diagnosed."
"Crohn's Disease?", I asked, "what's that?"
He went on to explain that it's an inflammatory bowel disease, which he then had to explain what inflammatory bowel disease was. Which now, thinking about it, is kind of funny.
So, I asked, (and I remember this sequence of events very, very clearly) "Okay, so how do we get rid of it?" And his answer hit me hard. "You can't," he said, "you are going to have this the rest of your life. There is no cure for Crohn's Disease."
"There must be something we can do?," my mum asked.
"Other than medications and surgery, there's nothing else I can do," my doctor answered.
I remember the look on my mum's face.

I was 20 years old.......

Next: Part Three

Friday, March 15, 2019

Top 10 IBD Blogs To Follow In 2019


top ibd bloggers title image - illustration of digestive system

Discussing bowel movements is undoubtedly a taboo subject for many people, which has helped a stigma form around Inflammatory Bowel Disease (IBD). For people living with IBD, most commonly in the form of Crohn’s Disease or Ulcerative Colitis, ‘embarrassment’, ‘shame’, and ‘isolation’ are regularly used words to describe the emotional strain that accompanies the physical symptoms of their condition. These bloggers, each excelling in particular areas, write openly and honestly about the realities of life with IBD. In doing so, they are helping create a community that offers support, raise awareness that helps tackle the stigma, and provide practical tips for various walks of life.

Top IBD Blog for Real Life
The authors of these blogs offer a glimpse into their lives with IBD. While each author’s story is unique, many of their experiences that have been shaped by life with IBD with strike a chord with their blog’s readership.


Research performed over the years suggests people living with IBD are at a heightened risk of developing comorbidities. It is a conclusion Jenni Lock would likely attest to, given that she lives with conditions such as fibromyalgia and bile acid malabsorption in conjunction with Crohn’s disease.
For the last decade or so, Jenni has kept a journal of her life and the effects of Crohn’s and fibromyalgia in particular. It is an incredibly raw and honest account of that time, covering everything from the impact of chronic diseases on her mental wellbeing to the ongoing battle to find effective treatment.
If you are new to Jenni’s blog, her ‘Medical History Highlights’ page is worth reading to gain an understanding of her journey since the early 90s, while taking the time to read her library of posts will provide you with greater detail of the last 10 years.
Although Jenni often discusses the most difficult aspects of her life, her writing is delivered with a supplementary dose of wit and humor – not least thanks to her unashamed use of memes. In fact, if you fancy a chuckle, the ‘Memes is Life’ section of Jenni’s website is one you should take a moment to peruse.


According to her Facebook description, Sam Cleasby is a blogger and public speaker raising awareness of IBD, ostomies, self-esteem and being so bad ass...
Sam’s blog, SoBadAdd.Me, was created in 2013, 10 years after her diagnosis of ulcerative colitis and in the midst of a particularly severe flare. It was around the time Sam started her blog that she decided to have surgery. In the early entries, she explains the reasons for opting for surgery and chronicles the build-up to the subtotal colectomy and end ileostomy procedures for which she was preparing.
She continued scribing after the procedures, openly discussing the difficulties she was facing, such as issues with self-esteem and concerns about family relationships.
In the six years that have subsequently passed, Sam has continued to write about practically every aspect of her life, from further surgeries and mental health to traveling and attending music festivals.
Given the engaging nature of Sam’s writing, it is little surprise that she is a capable public speaker and has given talks around the UK and Europe, as well as regular radio appearances.
Sam has undoubtedly helped many people over the years. For anyone living with IBD, has a loved one who does, or simply wants to gain a greater understanding of life with a chronic illness, SoBadAss.Me is well worth subscribing to


As Leaving the Seat Down enters its tenth year of existence, its author, Vern Laine, continues to write as prolifically as ever.
Having lived with Crohn’s disease since the late ’80s, Vern stated his intention in starting the blog was “to help me vent, but at the same time maybe help someone else along the way.”
Vern has published nearly 800 entries since then, a number of which compile his whimsical “you might be a Crohnie” series of one-liners (all of which are compiled into a single page on his site). The posts are indicative of Vern’s penchant for injecting dry humor into his writing, even when discussing weighty topics such as flares, surgeries, abscesses, and treatment.
While much of his writing is light-hearted in its tone, Vern does not sweep such difficulties of life with Crohn’s under the rug. If you sift through the blog archives, you can see how Vern’s writing reflects the ups and downs of the last decade.
In addition to his writing, Vern exhibits his creative flair in the form of painting, a hobby he took up in 2010 as a form of therapy and to help relieve stress.
Leaving the Seat Down is an engaging blog that is doused in wit, and one through which the personality of its author is able to shine.


Natalie Hayden is a former TV news anchor who was diagnosed with Crohn’s disease in 2005, a decade before having an ileocolic resection and anastomosis.
The following year, in 2016, Natalie started her blog and soon announced she and her husband, Bobby, were expecting their first child. Their son, Reid, was born in March the following years and has since become a brother to Sophia.
Natalie has faithfully kept her blog throughout both pregnancies and as she has taken her first steps into motherhood.
That is not to say Lights, Camera, Crohn’s is only for mothers or mothers-to-be who live with IBD. While it certainly is a wonderful resource for anyone interested in learning more about parenthood, Natalie calls on many aspects of her life experience in writing her posts. Topics range from discussing apps that can help track symptoms of IBD to preparing for colonoscopies, and everything in between.
Natalie also invites guest bloggers to share their stories on her blog, giving it a diverse touch and making Lights, Camera, Crohn’s an excellent all-round blog about life with IBD.

Top IBD Blogs for Advocacy
The Internet has created a whole new range of opportunities for patient advocacy. These bloggers are helping make genuine changes to the lives of others living with IBD around the globe.


Tina Aswani Omprakash was diagnosed with Crohn’s in her early 20s. The disease derailed her legal career and has nearly claimed her life on several occasions. Tina has undergone over 20 surgeries in her battle with Crohn’s.
Tina’s blog is a little under a year old; she began writing it in March 2018, just under a decade after having her colon removed. Years of complications were to follow the surgery and it was not until 2016 that the word “remission” was contemplated.
She has since become a prominent patient advocate, working alongside organizations such as Crohn’s and Colitis Foundation of America and the United Ostomy Associations of America. Last year, Tina was named an Honored Hero by the Greater NYC Chapter of the Crohn’s & Colitis Foundation.
Her blog is the perfect way of keeping track of her advocacy work, most recently at the 2019 Crohn’s & Colitis Congress. Tina also writes insightful features focused on other patients and healthcare professionals, shares tips for those living with IBD and ostomies, and does her bit to raise awareness and tackle the stigma regarding such topics.


Colitis Ninja, Amber Elder, was diagnosed with ulcerative colitis in February 2011, six months before she was due to earn her black belt in karate. The name of her blog is not simply a reference to her training in the martial art, but to the notion that those living with the condition are “hard core fighters” who fight their battles in silence.
In the years following her diagnosis, Amber became familiar with the shame and embarrassment that many people living with IBD live with.
Amber started her blog in 2014, in the midst of a particularly severe flare and shortly before having her colon (‘Colin’, as she and her husband refer to it with ironic affection) removed. Although she began writing for therapeutic reasons, the more she connected with others living with IBD with whom she could relate, the more it became a medium for offering mutual support.
Her blog – adorned with her excellent ninja-themed cartoons – has also become a platform from which she is able to discuss topics that are still considered taboo, raise awareness, and help fight the stigma that caused her to feel so isolated in days gone by.
Amber has shared her story and words of wisdom across the web, helping in her mission to give a voice to those who fight IBD in silence.

Top IBD Blogs for Health & Fitness
The symptoms of IBD can make staying fit and healthy difficult, particularly during a flare. A healthy lifestyle, however, has been found to ease the symptoms of many people living with IBD. These bloggers share how they achieve health and fitness targets while living with IBD.


It is stating the obvious, given the name of the blog, that its author, Ali Feller, is a keen runner. In fact, Ali has run seven marathons since starting her blog in 2010. She also lives with Crohn’s disease. In order to complete the 2016 New York City Marathon, Ali had to overcome a flare-up in the months leading up to the race that significantly disrupted her training.
Whether Ali would make the start line, let alone the finish, was touch-and-go until the very last minute; her completion of the race was, in her words, “undoubtedly a personal best” in every way other than time.
Ali’s experiences will resonate not only with runners but many people who must surmount the challenges posed by IBD to reach health and fitness targets.
As well as the Ali on the Run, blog, Ali has hosted a podcast of the same name for the last two years. The podcast, which regularly features guests alongside Ali, is also heavily influenced by her passion for running and health in general.


Stephanie Gish had lived with signs of IBD for a couple of years before, in 2006, she experienced her first debilitating flare. It was only when antibiotics failed to help that she was referred to a gastroenterologist. Although Crohn’s was suspected following a colonoscopy, she was not diagnosed until 2009.
Since then, Stephanie has experimented with different diets and health regimes, gradually discovering what works for her and what does not.
Stephanie started her blog in 2017 as a way of documenting both the foods she has found to help with the symptoms of IBD, as well as fitness tips including 15 minutes-per-day workouts. She did so as a way of sharing her experiences and providing inspiration to others.
While Stephanie acknowledges that each case of IBD is unique, and that what works for her may not work for others, she provides as much information as possible so that anyone wishing to try her methods is able to do so.
Since the turn of the year, Stephanie has also kept an accompanying podcast that features other people living with IBD.

Top IBD Blogs for Travel
For many people living with chronic illnesses, the idea of traveling is accompanied by as much stress as excitement (if not more). If you are living with IBD, these travel blogs can provide not only a dose of inspiration, but practical tips for planning your journey.


Probe Around the Globe is first-and-foremost an excellent travel blog. Its author, Naomi, has traveled from her native home in the Netherlands to countries ranging from Turkey to Tibet and has a particular passion for travel by train.
Naomi’s photo-laden blog covers some of the world’s most iconic rail journeys, including the Orient Express, Himalayan Express, and Trans-Mongolian Railway. She has also made the most of the Netherland’s excellent location and travel network to explore the European continent.
She has done all of this while managing Crohn’s disease.
There are entries on her blog relating to Crohn’s disease specifically and chronic illnesses in general, in which Naomi shares the wisdom she has accrued throughout her time traveling.
Of course, the extent to which one is able to travel when living with Crohn’s disease varies from person to person and there is no one-size-fits-all solution. However, for those able and willing to travel, but looking for advice from someone who has been there and done it, Naomi’s words on Probe Around the Globe are certainly worth reading.


The Crohnie Traveler was diagnosed with Crohn’s disease at the age of 13.
Her travels have taken her to the likes of New Zealand, Scandinavia, and China, as well as a solo backpacking trip around Europe.
Throughout her years of travel, she has learned – sometimes the hard way – what is required when traveling with IBD. Via her blog, she imparts the wisdom she has accumulated to others living with IBD, covering topics such as packing, planning, and the importance of details like having paperwork for medications.
Two posts named ‘The Grit’ delve particularly deep into such details.
Given her travel experience, her blog is worthy of a visit for anybody living with IBD wanting to ensure they can manage their condition as well as possible while traveling.

Originally published by Dan Brown in My Therapy App’s Blog on March 14, 2019

Republished March 15, 2019 with permission from author



Many thanks to MyTherapyApp.com for including me among other great IBD advocates and Mr Brown for writing a great article. It all goes towards better awareness, understanding and erasing the stigma all IBD'ers feel everyday.     Thanks to all of my readers!!  ~Vern

Saturday, March 9, 2019

"Crohn's Disease Ate My Colon" - My story (Part One)

We all know that Crohn's Disease, Ulcerative Colitis and IBD in general, affects us all differently in one way or another. The common denominator is the disease itself, that's it. There are slight variations in symptoms and how it affects us, but we all deal with it in our own fashion.

Me? Well.... here's my story.

June 1988 is when I was finally diagnosed with Crohn's Disease, symptoms came suddenly just 6 months prior, I had just turned 20.  I was the two sport athlete, ate "normally", no family history of Crohn's or any IBD.

Not always a good thing to be first.

I was born in a small town in the interior of British Columbia. We moved a few times, finally settling in Surrey, BC, Canada. I think my childhood was about as normal as the next kid, father went to work every morning (he was a teacher) and my mum stayed at home watching us kids. I was a pretty active kid growing up, always outside or doing something. I was introduced to ice skating when I was 8 years old after my parents took us to a local skating event. We signed up for lessons soon afterwards and quickly discovered I had a knack for skating. One of the coaches took notice and I joined the figure skating club at 10 years old. I enjoyed the quietness of tracing figures on the ice, over and over and over again. I remember how calming it was after a day of school. I loved the freedom of the free skating, the jumps, spins, artistry... the falling wasn't pleasant but it was all part of learning, which I think I've taken with me throughout my life. If you fall, get up as quick as you can, brush it off and try again. Repeat.
By the time I was 12 I was rising though the ranks, placing and winning in competitions and enjoying skating. I was teased in school which was hard, but back then you had two choices, let it bring you down or do something about it. I chose to do something about it and one day after some on going teasing about being a male figure skater,  I hit him and got into a fight. It was quick, but I stood up for myself. Things changed after that and once some of them came to see me practice, they noticed I was the only guy among 25 girls on the ice.
My life changed a few years later when my dad left us. Just like that, no clue as to why, just left. He left us each a letter and once I read it, I threw it out. I don't remember today what it said, but I remember that it made me angry and changed me. I went from being the nice kid, to being the angry kid. It affected my skating and I ended up leaving the sport in 1985 after attending our Provincial Winter Games. I had been playing soccer for a few years at the same time and started to concentrate on playing as I could take my frustrations out on the pitch.
It is at this point in my life, I personally think, that maybe Crohn's started. Not necessarily any symptoms showing, but the anger, anxiety and keeping everything in, contributed to the Crohn's gene starting it's life. It might not be the reason, because there is no known cause yet, but for me, I think it's a contributing factor.
It's birth inside me so to speak, even though symptoms won't show for another 4 years.....

Next: Part Two

Friday, March 8, 2019

You Might Be A Crohnie

If reviewing your medical records takes more than a week
... you might be a Crohnie

Monday, February 25, 2019

You Might Be A Crohnie

If you have ever rolled your eyes at someone who has told you "I know how you feel" and they DON'T have Crohn's
...you might be a Crohnie

Saturday, February 23, 2019

Have You Ever Been Let Go...?

With this recent story out of the U.S. and accusations against Amazon, click here

Fired Amazon employee with Crohn’s disease files lawsuit over lack of bathroom access


It begs the question, has anyone else been discriminated at work because of their illness or condition?  I know I have and it got to the point where I was fired so I filed a Human Rights complaint against the company because they knew about my Crohn's Disease when they hired me AND it was actually my second time round with this particular company.
But after many, many months back and forth with lawyers, with the he said, she said, the case was finally dropped....only because the company closed its doors and no longer existed. I had no case if there was no company.
The point is, if this happens to you AND the employer knew about your condition, don't let it go.
You have to FIGHT for your rights !!


Sunday, February 10, 2019

You Might Be a Crohnie

If you can go through a whole roll of toilet paper in just one day
...you might be a Crohnie

Friday, February 1, 2019

Remicade : Day 2384

Second infusion at the higher dose. I don't notice any difference, other than it really knocks me down after. I was very tired the next day and now this is the second day and I feel drained. Could be something else maybe, but we'll see after the next one in March.
I don't know about anyone else, but when I go for my infusion, I like it a bit quiet. This last infusion, some 20 something came in near the end of mine and sat in the chair next to me, which is all fine and dandy, but then proceeded to Facetime his buddy, without headphones and without turning the volume down. Like it was it house, or standing outside, or something. His mum came in to ask if he wanted anything and he basically ignored her and kept talking to his friend. They were both swearing back and forth, etc.
The lack of consideration and the utter rudeness to his mum I think is the sign of the times for 20 somethings. Not all, but a good many. It's not the first time I've experienced this.
My kids won't and aren't brought up that way. Have some respect.

Saturday, January 19, 2019

Thursday, January 10, 2019

Vitamins and Minerals

One of the problems with having Crohn's Disease (one of many), is the fact that you have problems absorbing the necessary vitamins and minerals your body needs.  Over the years, and alot of trial and error, I was finally able to find a multi vitamin that does not cause me pain and discomfort. I think the Remicade (Infliximab) has alot to do with it. The over the counter multi's have too many "fillers" which I think was causing all the problems. Of course the one I find that works, I have to get from a doctor friend as they are only available through health practitioners. What I found interesting was that these multi's have zero fillers and are derived directly from fruits and vegetables.... that's it, which in a way, makes lots of sense.  They are hard to get and cost more, but they work....for me. On top of the multi's, I also take other supplements. I take B50 complex, D, B12, Magnesium, Iron and Omega 3.
As a Crohn's patient, we need these supplements, but everyone is different so it will take a while to find what works for you. It's taken many many years to find what combination works. I dont take all of them at once, I take some one day and some the next day. I found that it I take them all each day, I get some pain and discomfort.
Even if you think they arent working, still take them, you never know.

Monday, January 7, 2019

Tuesday, January 1, 2019

Crohnie Quote of the Day : Strength

It's the first day of 2019 and even though I'm not a religious man, I do like the following quote from the serenity prayer that everyone should follow, chronic illness sufferers especially.

God grant me the serenity 
To accept the things I cannot change; 
Courage to change the things I can; 
And wisdom to know the difference. 

Living one day at a time; 
Enjoying one moment at a time; 
Accepting hardships as the pathway to peace; 



Happy new year to everyone and all the best to a happy, and healthy 2019 !