Skin Conditions

I have had another article published on inflammatoryboweldisease.net about skin conditions with Crohn's. 

Come read it here:

Skin Conditions

Visit inflammatoryboweldisease.net for more articles regarding IBD

.

My Take On Biologics

I have had another article published on inflammatoryboweldisease.net about taking a biologic with Crohn's. 

Come read it here:

My Take On Biologics

Visit inflammatoryboweldisease.net for more articles regarding IBD. 

Are Clinical Trials Necessary? *Updated Repost*

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 patient's 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 clinical 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, Alzheimer's, Parkinson's, Crohn's/colitis and now Covid-19 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 was on Remicade (800 mg) every 6 weeks. Recommended dosage is 5 mg/kg, meaning 5 milligrams of Remicade for every kilogram of the patient's weight. So I was at about 10 mg/kg because I had an ongoing problem with fistulating perianal disease. My body eventually developed antibodies to the medication and was taken off it after 8 years.  I was put on Humira for two years until a forced Government non-medical switch to the Humira biosimilar.

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 it in length about it, I declined. My Crohn's at the time was 'manageable' and to be honest, I was scared, even though 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 more than 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 was on Remicade for 8 years and it was a "godsend", for me. I regret my decision so many 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 by 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 don't 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

IBD Global Network

I had my first Zoom meeting with the IBD Global Patient and HCP Network today.  The first of many meetings over the next year with other patient advocates and health care professionals to discuss the relevance and need for clinical trials when it comes to IBD. More importantly, how to improve the clinical trial process from how to get patients to sign up to helping the healthcare professionals doing the trials with better resources, research, etc.

I have always been an advocate for the clinical trial process because without them, we may not have the amazing IBD drugs we have now.

I had the chance to be part of the Remicade trials in Canada more than 20 years ago but turned it down. I only wish I had agreed to take part back then. Remicade was amazing for me when I finally decided to go on it in 2012 until my body developed antibodies to it just 8 years later. I still think about those who were part of the clinical trials that ended up helping me with my Crohn's and I thank them for it.

There are many places to look for IBD clinical trials, here are a few:

Crohns and Colitis Canada

CISCRP

Crohns and Colitis Foundation (USA)

Crohns and Colitis UK

Clinical Trials (worldwide)

Sure, you might be in the placebo group but I think that IF there is a chance for a better life with a new medication, it's worth a try. I have tried to get into several clinical trials over the years but my main problem with not being accepted is that I have had bowel resections, too many for that matter, and do not qualify.

...but you might.

 

The Perspective of a Crohn's "Veteran"

I have had another article published on inflammatoryboweldisease.net about being a Crohn's veteran with 34 years "experience".

Come read it here:

The Perspective of a Crohn's "Veteran"

Visit inflammatoryboweldisease.net for more articles regarding IBD.

.

Perianal Disease: A Literal Pain in the Butt

I have had another article published on inflammatoryboweldisease.net about my Crohn's related perianal disease.

Come read it here:

Perianal Disease: A Literal Pain in the Butt

Visit inflammatoryboweldisease.net for more articles regarding IBD.

COVID 19 3rd Dose Booster

Crohn's and Colitis Canada has recommended that people who have IBD on medications that suppress the immune system be included with other immunocompromised people getting the 3rd booster shot in the fight against COVID 19.  See here:

COVID 19 BOOSTER

As does the Crohns Colitis Foundation:

COVID 19 BOOSTER

And Crohns and Colitis UK:

COVID 19 BOOSTER

Please contact your local governments to push adding immunosuppressed IBD patients to their 3rd dose lists.  With the Delta variant becoming more and more prevalent, and with the millions of people NOT vaccinated (for whatever reason) the risk of catching COVID is still there.

To Bag Or Not To Bag

That is the question.

It may come one day.  The decision to choose to have ostomy surgery.  Some might not have that decision as it may be an emergency.  When I had my first (of many) bowel resections starting in 1989, it was an emergency and my doctor and surgeon said to be prepared for the possibility of waking up with a pouch. In the end, it wasn't needed. Every resection I've had since there was always the chance of waking with the pouch attached.

Fast forward to around 10 years ago. My gastroenterologist strongly suggested I have ostomy surgery mainly because of my ongoing perianal disease. I had been doing "OK" with my Crohn's symptoms and frankly, I had gotten used to the perianal disease and how to "live" with it.  I had learned over the decades what to do and what not to do.  Sure it was a pain in the ass (literally), but the thought of yet another major surgery just wasn't what I wanted to do. I had just started Remicade and wanted to see how this new medication would work for me and fingers crossed, rid me of the abscesses, fistulas, and fissures.

8 years with the biologics Remicade and a year on Humira didn't seem to work for the perianal disease.  It worked wonders on my other Crohn's symptoms though. (Unfortunately, I am starting a biosimilar, Hadlima, tomorrow.)  A colonoscopy confirmed the fissures and stricturing about 6 inches inside. I made the decision to go through with the ostomy surgery along with the proctectomy with the hope to finally rid myself of the pain.  There is no guarantee of course because Crohn's is unpredictable, but after 33 years, maybe the pain will subside.

So, in September 2020 I had a temporary loop ostomy so the perianal disease can heal. It went well, but I was back in November 2020 with acute renal failure due to the amount of water I was losing. Two weeks later I had my permanent ostomy and proctectomy.  A month and a half in the hospital to maybe eliminate future hospital visits.

We are now 7 months post-op and I'm glad to have made the decision.  The only regret is I didn't make the decision sooner.  Oh sure, it's taking a long time to get used to having the pouch and I still am having some skin issues around it, and I am able to sit finally, but I wouldn't take it back. It's freeing in a way, not having to worry all the time about where a bathroom is.  There is no sudden rush anymore. The main problem right now is trying to keep hydrated in the current heatwave we are having. I am drinking about 5 liters a day, along with electrolyte drinks, and keeping out of the sun and heat. I still got dehydrated I think as I have shortness of breath, headaches, muscle cramps, fatigue, and nausea. Trial and error I guess.

So, to bag or not to bag? For me..... yes.

Humira : Day 1

Well, I'm giving Humira a go this time as the Remicade stopped working for me. My body started to become immune to the drug. It's too bad really. Remicade was a "god send" (if there is such a thing). It worked miracles for my symptoms and took most of my problems away, but the disease lingers still which was prevalent during my last colonoscopy. I never expect that it will ever fully disappear, but comparing colonoscopy results a year apart proved that the Remicade was not working anymore.

So, my Remicade lasted 2676 days, or 7 years, 3 months and 28 days.

I had my first 4 Humira injections yesterday, so I am at day 1.
I went to a clinic for patient instruction as I have never injected myself in my life and I never thought I couldnt do it, but wanted to make sure I did it properly. Better safe than sorry. They wanted me to wait for about 30 minutes after the injections to monitor my blood pressure, etc. just in case, but all's good.
I will do my next injections at home now. I have 2 injections in two weeks and then maintenance dose of one every two weeks.

Fingers crossed.....

Goodbye 2019

Looking back at 2019.... not very exciting really, as far as my crohn's is concerned.

I only had one hospital visit for my pesky little peri anal abscess which included a minor surgery and 24 hours admission.

My Remicade infusions were going fine, but I was starting to feel tired all the time...all the time...so after several tests, including a colonoscopy, it was determined that my body was becoming immune to the drug and it was time to start something new. So, having said that, my 2020 will start with a new drug, Humira. My first injections start January 2 and as I have never injected my self, ever, it should be an interesting way to ring in the new year. I need to get 4 injections the first day.... fun.

On the upside, I was nominated for two WEGO health awards, which is always a great honor. To be recognized by your peers is a humbling experience and I don't take it lightly.

In 2020, I'm looking to maybe meet some fellow IBD'ers or other chronic illness fighters. I have had crohn's for over 30 years and have yet to meet fellow warriors, so that's somewhat of a new years resolution I guess.

Finally I'd like to thank everyone that has come by and read my blog, left comments, emailed me or contacted me through Twitter and Facebook. Your support and input has been uplifting and I appreciate everything, thank you.

Happy new year everyone and all the best for a happy and healthy(er) 2020 !!

~ Vern

Remicade Divorce

Well, it's over.
8 good years have come to an end.
It's been a little rocky this past year, I'll have to admit, but the decision has been made.
We're done.

The final straw was my last visit to the hospital for surgery on another peri anal abscess, but my colonoscopy last October already showed the tell tale signs of my body becoming immune to the Remicade (Infliximab). My gastro told me that she saw "significant" ulceration even though my Remicade levels were pretty good.  I have noticed these past few months that I have not been 100%, tired all the time, no energy what's so ever.
So, what's next for me and my crohn's? Humira (Adalimumab).  I have never had to inject myself before, so it should be interesting.
All this comes at a time where I would have to come off Remicade anyway as the government is forcing everyone on Remicade to switch to a biosimilar, for no medical reason what so ever. It's all about money and not what the individual patient needs. No consultation with doctors or patients, just switching them.  The government set a deadline and the companies taking over the treatments are NOT prepared and are overwhelmed with the amount of patients.  This was not thought out very well.
In my case now, Humira, even though it is a biologic, does not fall under the governments "decree'.
I have to start all over again with tests, talking with Humira, Pharmacare, etc. I need to find out if I'm covered or if it's going to cost me. I've done everything else, now just waiting to hear about coverage, fingers crossed.
I do like the fact I don't need to go to a clinic anymore and I can have the Humira delivered to my house. I'm sure injecting myself will be something I need to get use to, but you have to do what you have to do to survive in this world.
My first injection should be end of December beginning of January.
Great way to bring in the new year.....

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

Physically and Emotionally

Everyone talks about Crohn's Disease and how it affects your "gut health", I mean, there's a hell of a lot of things going on in there all at once. But the disease is much, much more than that, physically and emotionally as well.

When I was finally diagnosed, I already had symptoms for months. Pain, weight loss and diarrhea were the most obvious to everyone around me. I mean, I couldn't really hide it. It's hard to disguise running to the toilet every few minutes or being curled up in the fetal position on the floor or your clothes hanging off you like I was 10 and wearing my dads clothes. I learned fast that not eating helped take some of the pain away, but not always, and not eating forced the dramatic weight loss. Physically I looked like I was from a concentration camp, skin and bones. Ribs were showing, my gut was concave and arms and legs had no muscle.
The worst came when I was 'confronted' on the street by a perfect stranger. Remember how everyone says, 'don't judge a book by it's cover'... well this guy had never heard it before. He asked me...and I quote, (because I will never ever forget it) ' Do you have AIDS? '
I remember being stunned by the question because I had never thought about it before, but there it was. I responded by saying no of course and that I have Crohn's, he had no idea what that was and I wasn't about to explain it to him.

I was in my 20's and now weigh a mere 110 lbs (50 kg, 8 stone)

I knew I was skinny, I could see it like everyone else but that day burned into my brain. It's this day I attribute to where I became more of an introvert (turning in on oneself). Not so much "shy" but I purposely started to stay home, avoided going out on purpose, didn't want to see anyone. I never was a party person but had lots of friends, a couple of close ones and a girlfriend. It's amazing what having an illness will do to your social life when no one understands, or wants to understand. It takes a toll on your life physically and mentally. I was with my girlfriend at the time for 3 years and she was there in the beginning when I started to get sick, but after my first two back to back surgeries, she dumped me when I got home from hospital. She said SHE couldn't handle me being sick, only reaffirming what I was thinking, who's going to want me in this condition? I mean, who could blame her, I went from having a toned athletic body (from figure skating and soccer) to skin and bone in about a year. I was still "me" but... not.
Everything starts running through your mind, including "why me?"  What the F did I do in my short life at the time, to warrant such a disease and my now new life? Still does sometimes. Depression goes hand in hand with this disease, and any disease for that matter. No one understood what I was dealing with and now I didn't want to talk about it... with anyone. Even if I wanted to, who was I to turn to? No one I knew had ever heard of Crohn's disease. There was no social media at the time, so I needed to go to the library (it's a place where they have books, LOL) and start researching. But even then, there was not much. No other people, no information, no job, no money, nothing. Talk about isolated.

In the meantime, not only am I dealing with regular symptoms from Crohn's but also the other complications like, kidney stones, fistula's, fissure's, peri anal disease, fatigue, dehydration, etc, PLUS malnutrition. I now know, but I didn't at the time, I was becoming depressed from all that was happening and how everything was collapsing around me. And then, in 1991, I had had enough. I tried to commit suicide.

I was home alone, things were not going well for me personally as well as with my Crohn's, I made myself a rum and coke, grabbed my bottle of Tylenol 3's and laid down on the couch. I remember taking 3 at a time, I don't remember how many I took in the end, but when I started to feel "funny" in the head and light headed, I started to freak out and got scared. I remember calling a Help Line to talk with someone (when I probably should have called 911) and I didn't want to call family or friends, not that I had many friends left. Let me tell you, the "help" line was not much help the woman on the other end of the phone eventually told me that she "had to go now, it was the end of her shift". I remember thinking, "are you fucking kidding me?", but in the end, it turned out to be okay because right after getting off the phone, I started to feel sick and ended up throwing up.

Today, I'm glad it didn't work. Today, I have a good life, married, two kids, a home, a job, etc.
I still have days where, mentally, I need a rest. Physically, I've gained all the weight back (thanks to Remicade), I probably could lose a few pounds now LOL! I still have days I feel pain, discomfort and other complications but I deal with it and move on. I don't have time to worry or dwell about it but I rest when my body says so and when my brain says so.

We all have those days, we all know how you feel and we are all here for anyone who needs help, even just to lend an ear, but we would never say, "sorry, it's the end of my shift, I have to go".

Coming up....Part 5

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)

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.

"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....

Next..Part Four

"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

"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

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.

Remicade : Day 2339

When I went to my Gastro in November, she recommended we up the dose on my Remicade (Infliximab) infusions, from 400mg to 600 mg.
She stated that new research has shown that for those on the biologic, where the Remicade levels are remaining normal but the Crohn's is not 100% in remission, raising the mg can help with the process.
For me, I still have the nagging peri anal abscess and she said that they would like to raise it to 1000 mg to maybe get rid of the fistulas and abscess.
So today was the first infusion in this process. We started at 600 mg and will do 600 mg for a while to see how my body reacts to the higher dosage. I'm still on the fast track so the actual infusion is only just over an hour and its been about 5 hours and I feel fine, just a little more tired than usual.

Fingers crossed this works.

Remicade : Day 2299

I have had the same IV nurse for almost all of my 2299 days, but sadly she has since retired and my first infusion with a new nurse.... she misses the vein 😒
I said I wanted to heat up my hand, but she insisted she could get the vein....needless to say, she let me heat it up a good 10-15 minutes before trying again.
After I unwrapped my hand, she said, "Oh, that's better!"

Really.......