How are those infusions supposed to help?

Dan Walsh’s Gilded Secrets Series Budding Star Quilt

How are those infusions supposed to help?

Crohn’s disease is a chronic (lifelong) autoimmune condition that inflames and irritates your digestive tract. It can’t be cured so I’m thankful I didn’t come down with it until recently. After a difficult spring, I finally got a diagnosis mid-May, but that sure didn’t solve anything.

Treatments typically help manage symptoms. Steroids ease them for some sufferers. I tried three different ones, alone and in combination. Nothing. Prednisone made things worse, adding muscle weakness to the mix. Meanwhile, I was seen by a physician with more experience. I’m so thankful for the change. It was a miserable spring and summer, and led to trying an infusion next.

My first dose of Inflectra/Remicade was finally at the end of July. It’s a biologic that blocks proteins that are the key drivers of the painful inflammation. It didn’t last the two weeks I had to wait for the next one, so I was skeptical. I just had the third one after another bumpy month (every couple of days, I needed to fall back to liquids and BRAT (banana-rice-applesauce-toast), and–if we needed to go somewhere–lots of Pepto Bismol tabs. But “episodes” aren’t as painful, so I’m starting to feel hopeful!

These biologics can also cause serious side effects. So does the pill I take to keep my body from rejecting the infusion. But I’m so thankful for this welcome relief.

I was feeling more hopeful than I look here. The machine at left takes blood pressure. The IV drip is in the upper right.

The first infusion took about four hours, probably harder on my Favorite Guy than me. The infusion itself drips for about two hours, but they need to weigh me each time because that determines how much I’ll be given. That’s sent to the pharmacy, which has my prescription. I’m set up in a comfy chair that heats, get fitted with an IV on top of my forearm, and take Benadryl and Tylenol by mouth. (The first time, the Benadryl was by IV and I was groggy for two days.)

Once the little bag arrives from the pharmacy and is hooked up to the IV, regular temp and blood pressure checks begin. Every 15 minutes, the unit beeps and the rate of drops increases, along with recording my temp and BP.

This shows the screen that the nurses consult and update every 15 minutes. My Favorite Guy’s chair isn’t quite as comfy as mine, so he often heads out for a walk.

We’re offered sack lunches, which helps Guy with the waiting. I can’t have gluten, so I get a bag of chips. I’m too groggy to read, but half a dozen friendly nurses rotate through the area as several units beep for attention. There were about ten patients undergoing the treatment.

Infusions are given for several ailments, including arthritis and MS. I don’t know anyone else personally with Crohn’s, but it seems like everyone knows someone dealing with it.

Thank God for modern medicine and nurses who know how to run these modern gadgets. And for a young MD whom I get to see again in about 10 days, for the first time since the infusions began. (She did call me after the first one.) She should have plenty of numbers from extra lab tests and the infusions to decide how my cells are handling it all, and how soon I’ll receive another one.

I’ve been able to eat eggs, roasted sweet potato, leftover pot roast (frozen from our last time at the Machine Shed Restaurant), and a little tuna salad three days in a row–for the first time in months. I’m exhausted so I can tell my body is under stress, but I praise God from whom all blessings flow!