September 20, 2022
Infusion for IBD Patients: Things to Know and Resources to Seek
The Allay Health Team
Many current IBD medications are administered via an infusion and most people have never had to deal with that before. This can lead to some confusion, questions, and concerns. In this blog, we provide you with some insights and resources that you can refer to along the journey. We will explore the following topics:
- How to decide if infusion medication is right for you?
- How to prepare for your infusion?
- Tips on the day of infusion
- Tips after your infusion
If you have any questions need answered while reading this blog, feel free to go to the bottom of this page and leave a comment! If you prefer a video format, we have recorded a learning session where we invited experts to walk through the content. You can access it here.
I’m considering infusion medication. What do I need to know?
Many first-time patients are confused about what infusion medication is or whether it is the right choice for them. This absence of knowledge can cause fear or intimidation of the unknown. When you are considering infusion medication, you can go through the following questions when deciding whether infusion medication is right for you:
1. How does the treatment fit into your life and preferences?
There is a multitude of factors that play into a treatment plan that is the perfect choice for your specific lifestyle and needs. From infusions at a provider’s office or an at-home injection, it is important to consider how the personal factors in your life affect how you would respond to treatment. For example, a person with a phobia of needles likely would not respond well to at-home injections. However, someone who would have a hard time traveling to a clinic may find at-home injections to be a better fit for their lifestyle.
2. Do you need to do anything to prepare for the treatment?
Make sure you are fully aware of the processes that go into your treatment plan. Many biologic medications that are infused or injected require blood tests or screening several weeks in advance. Make sure to do these right away if your provider orders them! At the same time, you should also think about whether the treatment is replacing your old treatment plan and when to stop your old treatment plan.
3. Can you afford the treatment? Are the treatment and the treatment site in your network?
Infusions from a provider’s office and injections given at home go through different parts of health insurance plans. While it is completely dependent on the plan, one may be more economically beneficial for a patient versus the other. These factors should also be factored into deciding which treatment plan is perfect for your needs.
4. Did you get all your questions answered by your medical team?
Make sure all of your questions are answered by your medical team. You can make a list of questions at home before you go and to advocate for yourself! While some patients may feel hesitant and worry about “bothering” someone, healthcare workers would always prefer that you ask so they can fill in the blanks in your head.
5. Do you feel like you need more information or support?
Communities like Allay Health can be places where you can ask questions, get answers, and find like people with experience you can learn from!
Preparing for your infusion
Here is what you should do if you decide that infusions are the right choice for your needs and preferences.
- Drink plenty of water at least 24 hours in advance - this can make your veins easily accessible
- Find out the duration of your appointment. Most infusions can range from 30 minutes to 2 hours. However, the appointment itself can range from 2-4 hours! Make sure to know how long you will be there.
- Get a good night’s rest. This can help with nerves and fatigue!
- On your first appointment, make a list of all your medications and supplements. It is important to note how often these are taken, or whether you are supposed to take them and don’t. Be transparent so your healthcare team can create the best experience for you!
- Make sure you got all your questions answered. Write down your questions and ask away! Your healthcare team wants to make sure you are comfortable and knowledgeable about your treatment.
- Find out if you can bring people with you to your infusion. With Covid-19, visitation policies have become more complicated. It is important to ask the infusion center whether friends, family, or even children stay during the treatment. It is recommended to schedule childcare considering the long appointment process or having another person at your appointment who can help.
Infusion day tips
- Start your day as usual! There are no special preparations required. Eat a nutritious breakfast, drink water, and take your usual medications (unless you have been told otherwise)
- Bring entertainment, a drink, and some snacks you know you can eat. It can be a long process, so make sure you have a book, a tablet, or other forms of entertainment to pass the time. If you are planning to watch a show or listen to music, make sure you have headphones so you do not disturb other people in the facility.
- Dress in layers, and consider bringing a blanket and warm socks! The medication going into your body is at room temperature, which is much cooler than your body temperature (~98°F). However, while layering, remember to wear loose shirts or a blanket so that your arms are still readily accessible for the infusion site
- Make infusion day a treat day! Treat yourself to a fancy latte or a nice dinner afterward. You can do something you love in order to make the day more positive and become something you look forward to.
After your infusion
- You may need to stay for observation. This is to make sure you tolerated it well. Hold pressure to the IV site after it’s been removed to minimize bruising. Bruising is normal/common! Do not be worried if this happens to you. A cold pack on the day of impact and a heat pack the next day can help the bruise heal faster.
- Until you know how the meds will affect you, don’t overschedule yourself. While there are no restrictions on what you can do after infusion, listen to your body and make sure you know what you can handle!
- Schedule your next infusion before you leave. Plan your other activities around your next infusion site. These medications work best when they are taken when they are supposed to be, so rescheduling can interfere with the quality of your treatment.
- Stick with it! Unfortunately, infusions do not work instantly. It typically takes a few treatments for patients to feel the improvement of symptoms. If this is not happening or if you are experiencing side effects, make sure to tell your healthcare team so that they can help you! Note that some patients have felt their symptoms for so long that after improving slightly, they forgot to tell their healthcare team about the symptoms that remained. The goal is for every patient to feel 100% happy and healthy!
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