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

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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.

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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 136

Humira has been an interesting adventure to say the least.
Oh, don't get me wrong, it's still doing the job, but I've had some weird "reactions" these past few injections and other IBD'ers I've talked with say it's strange as well.
So, let's back up...

I started Humira January 2 of this year without any fan fare, all good, pretty boring. Everything was pretty easy and no problems. Since then, I've had what I would call "reactions" after injecting.
Now, I don't know IF it's related to the Humira, but it's too much of a coincidence.
I do my injections every two weeks and I alternate between my left and right side of my abdomen.
Back in April, on back to back injections, I had Rigor attacks. A sudden, and I mean sudden, feeling of cold and chills, uncontrollable shaking and fever. The difference for me though, is I'll keep up with the shaking until I throw up and it slowly eases. It takes several throwing up episodes and hours later, it's gone.
What I'm left with though, is massive joint pain in my knees, hips, neck and jaw from the shaking.
It takes several days to fully recover.
My last two injections I have put in my thigh and no reaction, so I'm wondering if injecting into my abdomen is causing a reaction with my Crohn's. The throwing up makes me believe its causing a "blockage" type scenario.
I usually get Rigor attacks one a year or more before these last episodes. Now I've had two in as many months...weird to say the least. The only common factor is the Humira.
I have an appointment with my gastro soon, I'll talk with her more about it and hopefully I'm not the only one. Wouldn't be the first time.

But hey... it's always nice to be first at something....right?!

Humira : Day 57

Humira is different than the Remicade simply because I really have nothing to report!
I'm guessing it's working, but wont know for sure until another colonoscopy is done.
I have another MRI next week because one I had done last month was "unclear" regarding my pelvic region, probably to do with my ongoing peri anal fissure/fistula/abscess.
Hopefully this next one will be more clear for them. If it shows it abscessing worse inside, then I will need to see a surgeon to re access. If it gets that far, then I would need to get a colonoscopy regardless. Fingers crossed.
All I now is, since being on Humira, my peri anal disease has not been bad at all. It's definitely better, not 100%, but better.
Well, if I have to get another colonoscopy, my family sure enjoys it. I never remember anything from the conscious sedation, but my family sure gets a good laugh. And as everyone knows with this disease, sometimes you just have to laugh!

Humira : Day 29

Honestly, I don't see any difference between Remicade and Humira.
I don't feel any different.
I don't look any different.
The only real difference is time.
With Remicade, I had to drive out to the clinic to get infused, get the infusion and then drive home...so maybe 3 hours total.
With Humira, I take it out of the fridge to warm up a bit, then inject... so maybe 20 minutes total.
Also with the Humira, I don't even half to have a shower, get dressed, eat breakfast...nothing.
I do though.
BUT... I don't HAVE to if I don't want to and that's a bonus!!
If I showed up unshowered and naked to the infusion clinic, I think I might be sent home...
 or arrested 😆

Humira : Day 14

Well, so far so good. No problems. Pretty simple injecting myself. All's good!

I was a little surprised at the box that arrived to my house, though, the day before my injection.
I was expecting a little package, but it came in a large box. Inside the box was a large white Styrofoam cooler.
When I took off the lid, there was several frozen gel packs covering the two boxes of Humira.
I took the boxes out (I had to do two injections this time and then one in two weeks and another two weeks later) and there were more gel packs!
I checked out the Humira pens to make sure they were ok and put the gel packs back in the cooler, sealed the box back up, affixed the return label and called the courier to come pick up the box to return to the pharmacy.
Seems like alot to do, but still alot easier than driving half an hour to a clinic, spend and hour sitting in a chair to get infused with Remicade.
Ahhh, Remicade... my long lost friend, I hope your cousin Humira works as well as you did for me.
I did some calculations and one of my injections will be while we are away, so I am going to have to take it with me. I was hoping to avoid it, oh well. 

We gotta do what we gotta do

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.....