What to Expect During an Infusion for Crohn’s Disease

During the two decades I’ve had Crohn’s disease, I’ve been on lots of different medications. But an infusion — a biologic that’s given intravenously — can seem particularly daunting, especially if you’ve never had one before.

A lot of thoughts can float through your mind: How long will it take? Is it going to hurt? How will I feel afterward? What should I bring with me to the clinic?

As someone who’s been getting infusions for over a year now, I want to reassure you that the process is pretty easy. Here’s what I’ve learned about infusions over the past year, including what you can expect from beginning to end and what you can do to make your own session as comfortable as possible.

1. Work with your insurance company.

Most likely, your doctor’s office will either have an infusion clinic in their building or refer you to a clinic that’s associated with their office. But before you can make an appointment, your insurance company will have to approve the medication.

Once you get the green light, your doctor’s office may also recommend that you sign up for secondary insurance, which can be offered for free. This insurance can help offset any costs that won’t be covered by your primary insurance. It can feel a bit daunting, but once you figure it out, it doesn’t take much time to submit for those reimbursements.

2. Schedule your infusion.

Next, a nurse from the infusion clinic will call to schedule your infusion. Depending on which medication you’re receiving, you can expect to stay there for about 1 to 3 hours, so try to schedule it for when you can set aside that chunk of time. Personally, I try to schedule it for the early afternoon, so I can go home and rest right after I’m done.

If you’re like me, you might feel tired for the rest of the day, but other people still feel a little fatigued the next day, too. I’m usually back to work the day after my infusion, but I also make it a point to go to bed early.

3. Stay hydrated.

In the days leading up to your infusion, make sure you’re drinking enough fluids. If you’re dehydrated, the nurses may have a harder time finding your veins — no one wants that.

4. Bring some entertainment.

You’re going to be at the clinic for an hour or more, so bring something to do. I take along a fully charged iPad and make sure I download a few movies or TV shows before my appointment. That way, I don’t have to worry about a spotty internet connection or running out of battery.

Keep in mind that not all clinics have private spaces, so there’s a good chance you’ll be sharing the room with other people who are getting infusions. This makes a headset or headphones a must, for your privacy and to ensure you won’t bother other people.

5. Pack a snack or a meal.

It’s totally fine to eat during your infusion, so I usually pack a lunch that doesn’t require refrigeration — and doesn’t smell. Some of my go-to options: avocado rolls, avocado oil chips, a piece of fruit, a snack bar, and a paleo cookie. If that sounds fancy, it’s because it is. I like to treat myself on infusion days for the grit I show during my healing journey.

It is also a good idea to bring a big water bottle, because the only water they can offer you is in a little cup that, let’s face it, never quenches your thirst.

6. Wear comfortable clothing.

Think athleisure or PJs, but nothing too tight on top, since the nurses will need easy access to both of your forearms to see which arm has the best vein. It can get chilly at the clinic, so some of them will offer you a blanket (as well as a pillow), or you can ask for one. I usually just bring a big jacket from home, though, and drape it over myself.

7. Be ready for some preliminary work.

On infusion day, you don’t just walk in the clinic and roll up your sleeves. Your IV nurse will first get your weight and blood pressure and give you any pre-meds you may need (acetaminophen, for example, in case you have a reaction, like a headache, during the infusion). Depending on which medications you’ll be receiving, you may have to wait about 30 minutes before the infusion starts.

Once you’re settled in your chair, your meds may be ready for you in the infusion room, but some clinics need to have the pharmacy make it up before it’s sent to the room. If it’s the latter, it can take a bit longer.

Then, the nurse will begin your IV. It is okay to let the nurse know if you have a preferred arm or vein or need a heating pad to help warm up your veins (heat helps the veins dilate). Just be kind about it. The nurses work hard, so a smile and gratitude can go a long way.

8. Try to relax.

You’re almost ready to go. Now, all the nurse has to do is insert the needle. For some people, this can be the hardest part. If you have anxiety during the infusion, try listening to calming music or a meditation podcast, or close your eyes (anything other than watching the needle, really). It always feels scary the first time around, partly because you’re not sure what to expect, but the more you do it, the less overwhelming it will become.

Once the needle is in, your nurse will come by to monitor you and make sure you have everything you need. Don’t worry if you need to go to the bathroom. A nurse will unplug the IV machine (not the hook or the IV itself), so you’ll be able to take the stand with you.

After the infusion, they’ll remove the IV, check your blood pressure, and — if your BP looks good and you aren’t feeling woozy — send you on your way. You’ll usually be able to drive yourself home, and when you get there, make sure you listen to your body. Rest if you need to, and remember to drink plenty of water.

You should be feeling much better by the next day — and hopefully, the medication from the infusion will kick in, too.

If you feel intimidated starting a new medication, you aren’t alone. I know there can be waves of emotion when you begin a different treatment, especially with a medication you have never taken before or are receiving in a new way.

If you ever have doubts or fears, talk to your doctor or nurse, who can give you all the clarification you need. They’re there to support you, and you’re there to advocate for yourself — and you should always feel safe going into a new treatment.

I also recommend doing some research on your own to learn what else you can do to help your body heal, whether that’s eating certain foods, trying meditation or acupuncture, or doing certain types of exercise.

At the end of the day, you know your body best, but the more you know about the process ahead of time, the more confident you’ll feel.

I wish you luck and healing.