What to Expect at a Remicade Appointment

By Leah Clark

As someone that has been using remicade for the majority of their life with #IBD, I think it's safe to say that I've got infusion days down to a science. Check out this video to see what one can expect on infusion day with remicade and read more about it down below.

When I was first diagnosed with Crohn's disease at the age of 12, my pediatrician recommended that, along with several pills including Prednisone and Pentasa (mesalamine), I start remicade infusions right away. Besides a brief few months this past year without it, I have been taking remicade ever since then. Remicade has worked wonderfully for my IBD, so much in fact that for a few years, I was able to get infusions every 11-12 weeks, instead of the regular 8 weeks. That being said, it did take several years to reach that point with no flares during that time. Now, I understand that everyone's body is different and what works for one person with IBD may not necessarily work the same for another. It's importance to listen to your body and your doctor.

As someone that was only 12 when they received their first remicade treatment, I wish that I would have been more prepared and knew what to expect. I remember my first treatment literally lasted all day because of IV complications, reactions, and a lot of tears being shed. Now that I've been going for so long, I thought it would be great to allow someone else to have that information that I was lacking on my first visit. Whether it be your first time receiving a #remicade infusion, you are going along with someone to support them during their infusion, or you're an old pro at this point, it never hurts to see someone else's experience with remicade. In the video, I go through the whole process of my infusion day, including what to wear, what to expect for vitals, and the entire unedited viewing of getting and IV and starting the medicine infusion.

Hospital visits can be scary, especially when you don't know what to expect. I hope with this, you can feel more relaxed and prepared for your next remicade infusion.

7 Tips For Easing Travel Anxiety

By Erin Dunne

The weather is getting warmer, school is coming to a close and the time for traveling is here! I have been lucky to travel with my family on many road trips and am starting to go off on my own as I get older. I love traveling no matter where I go or who I am with, but I still get apprehensive when planning. Will I be able to eat out? Is there a grocery store nearby? Do I have to take my medication while I'm away? What if I get sick?

Going to new places and being confined in a single mean of transportation can be very stressful and bring out anxiety in people with #IBD. I don't know about you, but being bloated, in pain or uncomfortable is not precisely how I'd like to spend my trip. It's unpleasant enough at home but is even more so when away. Although I have a lot more traveling ahead of me, I have already learned through the years ways to ease my anxiety and make traveling as smooth as possible.

My top IBD friendly traveling tips are:

1. Set up a game plan with your travel buddies:

It's always best to make sure that you and your travel partners are on the same page and at least have a general idea of what you would like to get out of the trip. As someone with gut issues, it's important to clarify any needs that may need to be met while you're away- special diet, bathroom accommodations, etc. Explaining your concerns will not only help your partners understand better but will also put you at ease. By constructing a game plan, you'll have a better idea of what you'll need to prepare for- whether that means packing your own food for certain meals or staying somewhere with multiple bathrooms and a fridge.

2. Research restaurants you can go to:

I'm a BIG foodie so finding the best local places to eat when traveling is extremely important to me. I like to try to stay away from chain restaurants as much as I can when I'm away so I can experience more new places on my trip. By being prepared with gut-friendly places to visit, when the question of "where should we go to dinner?" comes up, you won't have to frantically search for restaurants on your phone while others wait. If you can't find a restaurant menu online, don't hesitate to call and ask if they can accommodate your needs. From experience, most places will be more than happy to work with you to create something you are comfortable having!

3. Stay somewhere with a kitchen:

Eating out for every meal can be expensive, impractical, and not always easy on the gut. With that being said, staying at a place that has a kitchen/ kitchenette can be very helpful and makes it easier to create your own meals. Being able to cook takes out the fear of getting a restaurant induced stomach ache and gives you some control as to what's being put in your body. Before traveling, make sure to search for any nearby grocery stores, so you can pick up some staples and save time.

4. Bring supplements:

Even if you think you can go a few days without supplements, bring them if they help your gut feel better! In my opinion, it's best to be over prepared than under prepared. Making sure you have your medicine and supplements (if you take any) can be stressful. If you're like me, even if you double and triple check that you have packed everything there is still a fear in the back of your mind that you forgot something. Put your medicine and supplements in a place that is both easy to remember and is accessible. I typically put mine in a pill organizer in my carry-on.

5. Pack snacks/meals:

If you have been in an airport before, you probably know that many of the items are often overpriced ($5 for a bag of trail mix that's mostly air? No, thank you). I always come prepared because it doesn't matter if I am stuck on a long car ride, a plane, or just walking around town- when hunger strikes, I need food asap. By packing some of your favorite, healthy snacks, this takes out the chance of settling for something that might upset your stomach. Some of my favorites are fresh fruit, homemade nut mix, and Larabars!

6. Pack your go-to remedies:

Bring some of your most effective remedies to help with any discomfort that may occur while you're away. Have a reusable water bottle on hand to make sure you are staying hydrated (and maintaining the environment). Some of my go-to's include: Bone Broth, Pedialyte packets, Apple Cider Vinegar, and essential oils. Having these items with me when traveling helps me feel at ease because I know that while I'm at home, they help make me feel better and if I am away, they will do the same.

7. Incorporate parts of your regular routine:

Most trips can follow a jam-packed itinerary that can leave you feeling exhausted by the end of the night and wishing for more sleep the next morning. While this may work for some people, others may function better with a flexible itinerary. Even if away, sticking to part of your daily routine can keep you more grounded and feel more comfortable when thrown into the unfamiliar. My morning and evening routines are very set in stone and help me unwind, so I always make sure to implement some of the same activities into my travels. At home, my routines are much more elaborate, but I make sure to take the simple, yet impactful things with me wherever I go. In the morning, I meditate and drink warm lemon water with Apple Cider Vinegar. Before bed, I drink a cup of tea and read or listen to an audio-book.

---

Ultimately, recognizing that traveling is never going to be perfect is the biggest help. Life is unpredictable and the best of us get a headache or stomach aches at what seems like the most inconvenient of times. I know it can feel as though you are high maintenance and you may also feel bad for "inconveniencing" your travel partners, but this is very far from the truth. Know that your health comes first and you deserve to enjoy yourself just as much as anyone else- you just may have to take a few extra steps to make this happen! These steps are necessary, and over time you will become more comfortable with whipping out your pre-packaged meal while your friends have take out. A happy gut leads to a happy traveler!

Stay Lovely,

Erin