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.
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.
If you have become an expert at ripping off toilet paper with one hand
..... you might be a Crohnie
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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
If you smile and nod on the outside while someone tells you how you can "cure" your disease, but you are rolling your eyes on the inside
....you might be a Crohnie
.
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.
Came across this article from McMaster University.
McMaster University: Crohn's Research
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.
Fingers crossed!
Thank you to everyone who visited my Redbubble account this past month, there were 99 visits, and especially to those who purchased items.
As promised, 100% of my profits went to Crohn's and Colitis Canada in the form of a donation through my Gutsy Walk campaign.
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 !!!!