Wednesday, September 15, 2021
Friday, September 3, 2021
Wednesday, September 1, 2021
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:
As does the Crohns Colitis Foundation:
And Crohns and Colitis UK:
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.
Thursday, August 26, 2021
Tuesday, August 24, 2021
Saturday, August 14, 2021
If you would like to read all my "You Might Be a Crohnie" lines, they are all on one page.
From the main page, click on the "You Might Be a Crohnie" tab, or click here:
See how many you can relate to 😁
Wednesday, July 28, 2021
Wednesday, July 21, 2021
Once again I am humbled for being nominated in 5 categories in this year's WEGO Health Awards. Endorsements are on now until July 31 and if you would like to endorse me or this blog, please click one of the badges below to endorse.
Saturday, July 3, 2021
Did you know you can get your own "F Crohns...it's the shits" T-shirt?
How about an "I don't look sick... You don't look stupid...looks can be deceiving" mug?
Wednesday, June 30, 2021
Today was my first injection of Hadlima, the biosimilar to Humira.
The injection pen was easy but it hurt more than the Humira. Only lasted a few seconds, but it definitely let me know it was there that's for sure. It's only been an hour and so far so good. Not that I'm expecting anything to go wrong.
I'm still not happy with the government forced-switching from a biologic to a biosimilar, but I have no choice and have to make the best of it.
Let's see where this goes shall we.
Tuesday, June 29, 2021
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.
Saturday, June 5, 2021
Monday, May 31, 2021
Please feel free to subscribe to my blog to receive emails letting you know when there are new posts.
If you are currently subscribed, thank you, but please know I have switched to a new subscription platform. Blog post alerts will be coming from follow.it and no longer from Feedburner. Just so you are not surprised. There are additional features with follow.it that were not available with Feedburner, such as filters and more delivery channels.
Thank you all for following and subscribing!!
Monday, May 24, 2021
I live in Canada and while my country is great for universal health care, the money from the Federal government is dispursed amongst the provinces and territories for their own needs.
MY provincial government, the NDP of British Columbia, in their "wisdom" has decided to forcibly switch my medication for the sole reason of money. No consideration to me as the patient. A non-medical switch from my biosimilar, Humira (adalimumab), to a biosimilar, Hadlima. Crohns and Colitis Canada, doctors and practitioners have been advocating on behalf of patients since 2019, falling on deaf ears at the government level. They did this a couple years back when I was on Remicade. Back in April, I wrote a letter to our provincial government, the Health Minister and the Premier, as well as news agencies, and the ONLY response I received was a note from a general entity within the government, with a link to biosimilars. I don't need more information on biosimilars and biologics, I'm pretty sure I have done way more research on the meds than the government ever did. I asked for proof that switching patients who are long-term users of biologics, to biosimilars has no side effects. I also asked where were all these "savings" being directed to. No surprise I received zero response.
I am not saying that biosimilars don't work, I see plenty of evidence they do. That's not in question. What I am asking those who are in charge, to prove to me that forcibly switching patients for nonmedical reasons, is better than leaving them on medications that are working for them. The decision to switch should be between the patient and the doctor and not the government.
I have had Crohns disease for 33 years and the past 10 of those have been on biologics. The ONLY drug that has worked for me and believe me, I've tried many. I understand using biosimilars, but it should be for patients who have not tried biologics and keep those who are on them, ON THEM. When, and if, the biologic stops working for them, THEN switch to the biosimilar. Not say, "too bad, we're switching you" end of story.
I guess we'll find out what happens to me after June 2 when I am supposed to start Hadlima. Hopefully, it works and keeps my Crohn's at bay.
No one ever said there were ethics in government. They are proving it now.
****UPDATE**** My Hadlima starts July and not June 2
Tuesday, May 18, 2021
Monday, May 10, 2021
Thursday, April 29, 2021
Once again I will be walking for Crohns and Colitis Canada for their annual Gutsy Walk on June 6
"In the last 26 years, Gutsy Walk has raised over $46 million for research projects that have led to important findings in the understanding of inflammatory bowel disease. These findings help pave the way for researchers to build on the knowledge so that together we discover new treatments while uncovering the root of these painful diseases."
Please help me raise as much money as possible for more research!!
The cure is getting closer and you can be a part of it.
Sunday, April 11, 2021
Came across this article from McMaster University.
Hopefully, this leads to better treatments and maybe the cure.
I've always wondered what triggered my Crohn's as I was healthy and athletic. Everyone I've talked to has all had different experiences, but all of us have the same question, "how the hell did I get it?" Maybe this is the beginning of the end.
Friday, April 2, 2021
Thank you to everyone who visited my Redbubble account this past month, there were 99 visits, and especially to those who purchased items.
The Walk is on June 6, 2021, and this will be my third year walking and my first as an ostomate. At least I won't have to worry about rushing back to go to the washroom LOL.
Please come and participate on June 6 (virtually) and/or donate to the cause either through my campaign or someone else local to you.
Thank you !!!!
Saturday, March 6, 2021
Exciting announcement !!
For the month of March, 100% of my profits from sales at my Redbubble account, will go to Crohn's and Colitis Canada in the fight for a cure.
You can find a wide variety of products with my artwork here:
Here are a few examples:Jigsaw puzzle from my Intergalactic Cloud 2 collection
Skirts from my Flowers collection
Leggings from my Fire and Ice collection
...... and so much more !! There are dozens and dozens of products
Just remember, 100% of my profits from sales, go towards finding a cure for IBD.
Help fight the fight, and thanks in advance.
Wednesday, February 24, 2021
I know I've talked about this before. How people who either don't have a chronic illness, like Crohn's, know someone with a chronic illness or are a little ignorant, just don't understand. This covers a wide variety of people from friends, co-workers, employers, and even doctors.
Friends, or who I thought were friends at the time, some co-workers and even some employers use to say, "but you were fine yesterday" or "you don't LOOK sick". Not knowing or understanding, but assuming or insinuating that I was faking being sick. The fact that I was actually faking being well never dawned on them.
So to all those doubters for the past 33 years that I have been diagnosed and battling this "fake" disease, here is a picture of the 5 full binders of my health records.
Friday, February 19, 2021
It's been a long and hard 6 months struggling with my disease.
Multiple surgeries, kidney problems, and ostomy issues, but I'm alive and getting through it...slowly. But even with all that I'm dealing with physically and mentally, there are still many others who have IBD worse than me. I'm "lucky" to be considered a mild case.
It might be too late for me when it comes to a cure for crohn's or colitis, but we can still raise some money to help find that cure.
Please click the link below to support my walk and help find the cure and raise awareness for IBD.
Please help me find a cure and end the stigma.
Monday, January 18, 2021
There's that saying, "slow and steady wins the race", which may be true, but it is so frustrating.
So, for me, it's more than frustrating. I had my first surgery mid September for temporary ostomy which failed and caused further problems with my kidneys from the watery output. My GFR was down to 5 (normal LOW is 60) and was going into kidney failure. That ended me back into hospital for almost a month for my kidneys, making my ostomy permanent and a proctectomy (removing rectum and anus).
The slow part of my recovery after all of "this", is the proctectomy. It's taking way too long for my liking simply because of its location. Don't get me wrong, it's healing, just slow. On top of it all, I need to monitor my kidneys still and make sure I take in a lot of water every day. I get bloodwork every week to make sure, but they are still not up to 60. I drink a minimum of 4 liters of water everyday, but if I have watery output through my stoma (who I have nicknamed "Squirt"), I have to drink more to compensate.
It's coming along, slow and steady.
I am taking this "new year, new you" thing seriously this year.
I definitely am new.