The story of going for treatment that leaves me immunocompromised in the time of coronavirus

Discussing one aspect of chronic illness during a pandemic.

Specifically, my Chronic Illness: Crohn’s Disease!

Need a better reason to stay the blazes home for any non-essential travel or interactions? Consider the risk you’re bringing to those who are immunocompromised like… me! Here’s a story about one recent day for me on the outside!

The very drug that keeps me healthy Crohn’s-wise can leave me at risk, infection-wise! #Crohns #crohnswarrior #remicade

Crohn’s Disease and Immunocompromised

Tomorrow is going to be weird.

I haven’t been inside another building in 32 days. I haven’t shopped anywhere. I haven’t visited anywhere. I haven’t been anywhere! Aside from walks around the neighbourhood, and dropping some goodies off a couple of times on a friends doorstep. Oh, and to wave at my parents from their front lawn after they finally made it back home from Europe. I’ve driven the car twice.

I’m not an essential worker, and neither is my husband. We’re both working from home, we’re sharing kid duties. He’s the official shopper of the house, heading out as few times as we can make possible. Wine is delivered straight to the door.

Tomorrow is my free pass. I get out of the house, out of the neighbourhood. I get to see other people and catch up and be closer than six feet together because… of all places, I’m going to a health clinic. For an infusion of the medication I receive every six weeks. I will be there for five hours.

The very drug that keeps me healthy Crohn’s-wise is going to leave me at risk, infection-wise! While everyone else is washing their hands and social distancing and self-isolating and doing what they can to stay healthy, keeping their immune systems in check, I’m going to actively wear mine down. 😲

The medication is an immunosuppressive, i.e. a medication that suppress the immune system. It’s called Remicade.

In fact I am on two immunosuppressive medications, one that I take daily (Mercaptopurine), the other being the biologic infusion.

These drugs, that treat a number of autoimmune diseases, lower the ability of your immune system to fight infections.

A closer look at Crohn’s disease

Coles notes: my Crohn’s has caused my immune system to attack healthy cells in the GI tract, resulting in inflammation. That often has become very bad, debilitating inflammation. A Crohn’s Flare, as we call it. The medication suppresses the immune system by blocking the activity/that attacking. Of course, the immune system is important for resistance to infection so ideally it’s best not to mess with it. Especially these days.

So, having a compromised immune system from a medical condition or treatment (like immunosuppressive medications) is deemed as medium risk for infection and serious complications of COVID-19. So, not low-risk, not high-risk, but right in the middle there - just like others with underlying medical conditions. You can learn more about Crohn’s Disease, and Crohn’s Disease and Covid-19 here, from the National Crohn’s and Colitis Charity organization.

To be honest, nothing will really change for me after the infusion, I don’t think. The advice for those at medium risk because of IBD (Irritable Bowel Diseases like Crohn’s & Colitis) and immunosuppressive drugs is to avoid in-person meetings, work from home, use virtual technology, and use services for vulnerable ppl to avoid contact with other people. We haven’t really felt the need to do that. We’ve been ok so far and have stocked up on everything we need for the next little while (though probably should order some more beverages.That’s always a good idea!) So all things we should all be doing if we can anyway.

Regardless, I think tomorrow is going to be weird.

The next day…

After 32 days of self-isolation, it’s time for a trip across town to a health clinic for an infusion of immunosuppressive drugs

So I had my big day out. And here’s the deal. It was weird, at first. There was no one around so it was kind of eerie. I had to go into this professional centre and up an elevator and there were signs everywhere saying to leave if you aren’t supposed to be there, if you don’t have an appointment, you are loitering, do not to enter if you have certain symptoms. At the clinic you had to knock and wait to be let in.

Stay the blazes home…unless you need essential health care! #crohnsdisease#remicade #stayhome

They asked a million questions about symptoms and travel and potential exposure and took my temperature. All was good and they let me enter.

Once I was settled in my seat the nurse noticed some welts on my neck. This was before I even started receiving the drug. They were totally due to stress. I was nervous about being there! I had Ativan with me (prescribed to take with the infusions after a past slightly traumatizing allergic reaction) so before long, was cool as a cucumber!

I spent the morning in the small private room. At lunch time I was moved into one of two main treatment rooms. An elderly lady joined my room (the other two chairs were closed off), and we sat at opposite ends of the room receiving treatment.

The other main treatment room has four or five chairs I think, with only three people using them today. It was very quiet. The sets of people in the morning and afternoon switch in and out as infusions are normally 2.5 hours. I’m there for five to six hours because I have a slow infusion, since I’ve had a reaction to the drug before (more on that later). The space looked like they were either just moving in or just moving out. Everything had been packed up. There was nothing laying around.

There were three nurses working, all very familiar faces, wearing gloves and masks. God love these people. They come into work everyday and I’m sure really hoping their patients have been doing all the right things to limit exposure, but they’re there nonetheless.

Everything felt very clean. Every time someone used the bathroom, they were straight in to wipe everything down. Only nursers were opening door handles. There was lots of hand washing going on and bottles of hand sanitizer all around.

A change in routine: Crohn’s treatment in the time of coronavirus

They continue to serve coffee, tea, water and juice, only now in disposable cups. They still offer snacks but we weren’t allowed to physically pick them out the basket ourselves. They handed them over. They also weren’t allowed to hand out blankets or pillows, so I was freezing all day (it feels cold having fluids pumped into you!)

The nurses usually check vitals every 20-30 minutes to make sure everything’s fine. They start the infusion slowly and bump it up in phases until its flowing at max — usually taking 2.5 hours. As I mentioned, I had a reaction in the past to the drug (that’s a story for another day) so it’s extra slow for me so if I were to start having a reaction, it would come on slowly and they could stop things, or even better not have a reaction at all. But this time they didn’t check vitals and just asked us to let them know if we felt any thing come up at all, checking vitals at the start and end of the infusion. All to limit the amount of contact with each other.

They gave me a letter permitting me out for my next treatment should life get locked down even tighter and we aren’t able to move so freely around the city. Let’s hope it doesn’t get to that, but you never know. I’ll still need this treatment, move than ever to be sure to keep my health in check so I don’t wind up IN an over-taxed hospital alone with a flare-up.

All settled in to pass the time away while receiving an IV infusion treatment for crohn’s disease #Crohns #crohnswarrior #ibd #remicade

A very weird taste of freedom, if you can call it that

So, other than those new protocols and the eerie, quiet. emptiness, it wasn’t so much weird, those aspects aside. It actually just felt normal. And now, having a taste of that normal day as part of my normal life routine, has me really craving normalcy. I want to go to a yoga class. I want to have my book club this weekend. I want the girls to be able to play with their friends. I want to go out and have drinks with my friends and dinner with my parents.

But that’s not possible right now. So it was a taste of life before. Maybe not what I would have chosen to have a taste of today, if it was my choice, but at least now I’ve gone and done what I need to do to keep my health in check. I wasn’t prevented from doing that, thanks to some amazing healthcare workers. THANK YOU TO ALL HEALTH CARE WORKERS CONTINUING TO DO THEIR THING OUT THERE.

We’ll see where we are six weeks from now, come my next appointment at the end of May. That’s an interesting benchmark to watch for, to see what things are like come then.

I hope you’ve learned something about one aspect of how life with Crohn’s can be for someone, and how everything that’s happening with Coronavirus in a roundabout way affects someone you know - me!

Thanks for reading!

Subscribe to The Heather Chronicles!