Wednesday, June 30, 2021

Hadlima (adalimumab)

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

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.

Saturday, June 5, 2021

You Might Be A Crohnie If....

 If you have become an expert at ripping off toilet paper with one hand

..... you might be a Crohnie