Flying with IBD

 

If you have IBD, you may be concerned about traveling long distances by plane. Even though you may be worried and feel that it’s impossible for you to travel, there are ways for you to prepare for long journeys.  

 

Medication

  • Make sure to bring an adequate amount of medication to last for the entire trip, as you don’t want to end up without any medication.  
  • Bring your prescription forms just in case you do run out of your medication, so you can get it refilled as soon as possible.  
  • Keep your medication close by, preferably in whatever bag you may be holding. Do not keep it in a checked bag if you are traveling- your luggage may get lost. 
  • Take over-the-counter medications with you to help manage milder symptoms. 

 

Documents

  • Keep some form of your medical history with you while traveling. 
  • Keep your doctor’s phone number saved in your phone for emergencies. 
  • Keep your insurance card with you at all times. 

 

 

Booking and Preparing  

  • When booking your flight, try and find a seat available in the aisle and close to a bathroom. 
  • Book a specific meal plan for your flight ahead of time, so you can eat on the plane. 
  • Bring snacks that are appropriate for your specific diet needs. It’s better to bring them from home than it is to buy them at the airport. 
  • Buy a water as soon as you arrive at the airport, so you don’t become dehydrated on the flight.  

 

 

Asking Questions  

  • See if you can find a map of the airport or ask an employee where all of the bathrooms are located. 
  • There are cards available that allow you to skip the line in the bathroom if you let the airport know ahead of time. 
  • Ask if you can upgrade your seat to a more comfortable area if possible. 

 

Being Safe 

  • Get all of your vaccinations ahead of time, especially if you are leaving the country. 
  • Don’t travel if you feel like you are getting sick. It could make your symptoms worse. 
  • Be careful with eating. Airport food is not always the freshest or the healthiest, and it could potentially harm your digestive system.  
  • Get travel insurance to cover your IBD problems if possible. Make sure that you are fully covered before flying.  

 

It is fairly easy to fly with IBD after you do it a few times.  Don’t be afraid to speak up and ask the employees’ questions if necessary. Don’t let yourself suffer in silence. Traveling is meant to be fun not to feel like torture.  

 


Talking to Your Teachers about IBD

Being a student with IBD can be ridiculously difficult sometimes.  I know, first hand, that schools and teachers just don’t get it.  However, you have to work with your parents to make school a little bit easier. 

 

The first thing that you should definitely do if you have been diagnosed with IBD is send out an email at the beginning of the year, explaining what your disease is and how it affects you.  If you’re in a flare, it isn’t going to help if your teachers and the school don’t understand what is happening.  They might just think that you have a stomach bug when you actually suffer from a debilitating disease.  

 

You might even want to set up a meeting with all of your teachers and your parents, so they fully understand everything that you go through.  Do not be shy about telling them what’s wrong because they will help you out more if they understand.  

 

Make it clear to your teachers that you don’t want them to treat strangely, especially in front of your peers.  This way, you won’t stick out to your classmates.  They won’t even know if you don’t want them to. 

 

One of the most important things is to try and get accommodations for your disease.  If you attend a public school, the school is required to follow these accommodations by law.  Even if you attend a private school, you can still talk to the staff and ask for accommodations.  These are especially helpful if you are in a flare, and you are finding it difficult to go to school or stay in school.  

 

The best thing to do is to just simply be open with your teachers and the school in general.  They won’t judge you for your disease.  If you reach out to them, they will most likely be accepting and helpful.  Don’t stay quiet if you are sick.  It isn’t your fault that you are having trouble in school, and if you tell them, they will know this.  

 

I hope that this post helped some students, who have a difficult time talking about their IBD.  I will have a more in-depth post up later about accommodations and the 504 Plan specifically.  

 


Handling a School Workload

The workload in high school is often difficult to handle.  But when you have a chronic disease, that workload can feel almost impossible to keep up with. You may feel too tired to stay up to complete your homework or to even stay awake in class. These issues can be detrimental to your happiness and your GPA. However, by seeking accommodations and by following the tips below, your illness can have less or even no impact on your school workload.

 

Tip #1: Learn about your assignments early.

 

If you truly want to be successful in school, you will need to talk to your teachers and ask them about upcoming assignments before they are even assigned.  Tell your teachers about your situation and explain how knowing about assignments early will help you perform better in their classes. If you receive your assignments early on, you should be able to have plenty of time to complete them.

 

Tip #2: Find out what your best studying times are.

 

Some people are morning people, and some are night owls. Others are somewhere in between. You need to find out when you are the most alert and most capable of working efficiently. If you are your best early in the morning, then you will have to wake up early and start working. If you’re most efficient at night, then you’ll have to stay up late to complete assignments. You won’t be able to work properly if you are trying to work when you are tired or not feeling attentive.

 

Tip #3: Stay on top of deadlines.

 

If your teacher gives you a deadline, write it down immediately. Start working in little blocks of time so you don’t end up having to complete the entire assignment at once. It will save you from experiencing excess stress.

 

Tip #4: Keep organized.

 

When you have IBD, your symptoms can make your life feel hectic.  You don’t want your school work to feel hectic as well. Try getting binders for each class, color-coding your notes, getting a planner- whatever you need to do to feel organized and ready to work.

 

Tip #5: Tell your teachers about how you’re feeling.

 

If you have accommodations, you shouldn’t need to talk to your teachers, but if you don’t have accommodations, you should definitely tell your teachers about your disease and ask them if they can help you feel less stressed. They should be understanding of your situation considering you have a painful disease preventing you from completing work. They could potentially adjust assignments for you so you don’t feel overwhelmed by the workload.

 

These 5 tips can both lower your stress level and save your GPA. Maintaining a high school workload while suffering from IBD can be a challenge, but it can be done. You just have to make sure you apply yourself correctly and ask for help if necessary.

 

 

 


How to Eat Out on the SCD or Paleo Diet

If you’re on the SCD diet or the Paleo diet, understanding how to order off a menu at a restaurant can be very difficult. I know that I struggled to find things to eat when I was first on the SCD diet.

The SCD diet is limited to only grain-free, sugar-free, starch-free, and unprocessed foods. The Paleo diet, on the other hand, is based on the idea that humans were meant to eat a certain way – like they did when they were cavemen. The Paleo diet consists of meat, fish, vegetables, and fruit. Dairy (optional), grain, and processed foods are not allowed. These diets are good for people in general, but especially for patients suffering from IBD.

The SCD diet was actually created to treat Ulcerative Colitis. The idea was that the healthy foods would starve out the bad bacteria in the colon. This diet can also be used to treat Crohn’s.

Because the diets are highly restrictive, finding something to order off of a menu without going off the diet can feel impossible. But with time and practice, learning how to read menus with these diets in mind, the process eventually gets much easier.

Here are some tips to help you get started:

 

1) Always look for the protein first.

 

The main part of your meal will most likely be some type of protein. Looking for proteins such as fish, beef, or chicken that are grilled, sautéed, or blackened is key. Make sure to check whether the meat is breaded or not. If the menu doesn’t specify, you can look online to see whether the type of food you’re looking at is normally breaded. And if you’re still unsure, you can always ask your waiter. He or she is there to help you get the meal you want.

 

2) Be wary of carbs.

 

Make sure the carbs you are ordering don’t contain bread or anything that you know is super sweet. If the selection is sweet, chances are it contains sugar. I have added many foods to my diet over the years, and I rely on potatoes, sweet potatoes, and plantains for carbs at restaurants.

 

3) Extra veggies!

 

If you don’t think you can get any carbs because the menu is limited, always ask for extra vegetables. Filling up your plate helps ensure you actually have some substance to your meal.

 

4) You can get dessert.

 

Most desserts at restaurants tend to be cake or ice cream, and, at first, I felt sad because I have a sweet tooth. I felt as though I couldn’t enjoy sweets at restaurants anymore. Recently, I’ve learned this is not true. At most restaurants, you can get berries and cream. I know this isn’t the equivalent of a chocolate cake, but it’s definitely better than nothing.

 

5) Never be afraid to ask the waiter.

 

Waiters are there to help you. Don’t be afraid to ask a question about a certain item of food – or even to tell them about your diet. They can talk to the chef and get you a meal that is safe and delicious.

 

6) Do your best!

 

We all make mistakes sometimes, and accidentally ordering something that doesn’t fit our diets isn’t the end of the world. Make your best guesses and don’t give up.

 

I hope I helped give some insight into how you can order food at a restaurant and maintain an SCD or Paleo diet. Eating at restaurants won’t be easy, but with these tips, I hope you discover that doing so is definitely possible.

 

 

 

 


The Aftermath of Prednisone

One of the medications that I have been given in the past is Prednisone. If you aren’t familiar with the drug, it is a steroid that must be prescribed, and it treats many conditions and diseases, specifically those that are associated with inflammation. Basically, it helps the inflammation go down, which is why it is often used when treating Crohn’s and UC.

There are lots of side effects that occur when taking Prednisone. For most people, the longer you’ve been on the drug, the longer it takes to get out of your system. My doctor says that for however long you are taking it, it takes twice as long to get out of your system. I was prescribed the drug in September, and I finally went off of it in November. It is still in my system. I wanted to share with you some of the side effects that I have gotten from the steroid.

The first side effect I have is called “Moon Face”. Prednisone makes you retain a lot of water weight. Moon Face is when your face becomes puffy from the medication. You lose the definition of your cheekbones and jawline. For young people who suffer from IBD, this is a very difficult side effect because we tend to be focused on how we look. However, it has gone down for me slightly. I can promise you that this will go away, and if you wear makeup, you can definitely contour your face to look more sculpted than it actually is. Otherwise, I wouldn’t worry about it. No one cares or even notices except you and maybe your family.

The second side effect I have is weight gain. When I first got home from the hospital, I had lost a significant amount of weight. For two weeks, I stayed that way. Then, I began to gain weight rapidly. I am the heaviest I have ever been in my entire life. I have been struggling to lose the weight, but nothing is working. The only thing that even remotely works is eating approximately 200 calories a day and working out (which is not healthy and really difficult when you’re weak and dizzy all the time). What I recommend in order to stay sane, is just waiting for the drug to get out of your system. However, DO NOT BINGE BECAUSE YOU CANNOT LOSE THE WEIGHT ANYWAY. I have gone back and forth with dieting and then binging (I’ll talk about this issue another time), and I think the best thing for me to do is to eat intuitively. I pay attention to when I am truly hungry and when I am truly full, and I keep my weight balanced. Once the drug is out of my body, I will lose the weight more easily. Do not worry about it for now. I spent so long worrying, and I had no self-love. It’s not fun to live like that.

The third side effect I have is acne. I’m the type of teenager that has what a lot of people call “baby skin”. I’ve always had clear skin, and I don’t know what it’s like to deal with acne. When the Prednisone finally kicked in, my skin started breaking out badly. My entire face was covered in it (specifically forehead and chin area). I went to the dermatologist, and I was prescribed retinol, which I have been taking for a few weeks now. It has dried out my skin, and my breakouts have not cleared up yet. However, I have taken Prednisone before, and I have had breakouts caused by it before, and I know they will eventually go away. Again, this type of thing is difficult for young people who are suffering from IBD because it has to do with what we look like. Try not to touch your skin, and if you have gone to the dermatologist, follow their instructions on what to do.  Also, drink water! It has really helped me. I promise that it will go away once the drug is out of your system.

Prednisone is not a fun drug to take. There are lots of side effects, and in general, it just doesn’t make you feel well. I know that my advice wasn’t really on how to get rid of these side effects and more about being patient, but that’s all the advice that I can really give. There are so many people that are in the same boat as you and I are, so you don’t have to feel alone. Let me know in the comments what side effects you’ve experienced and how you’ve dealt with them.

Lisey


Thanksgiving (Paleo/AIP)

Happy Thanksgiving! I probably should have posted this before Thanksgiving, but I totally forgot. It’s a hectic time of the year, so I hope that you can forgive me. I also would like to apologize for not posting for so long. I started school again, and I’ve been busy trying to catch up on all my work.

I am on the SCD diet for my UC, and I know some people have some issues with the diet and others love it, but that’s beside the point. I have added in a few things to the diet, so I am not as strict as I could be with it. Last year, my mom made all my food for Thanksgiving, and I know that it was stressful for her to make my food in addition to the normal Thanksgiving food. However, she managed to pull it off, and it was very good.

This year, my mom decided to try something different. She found a website called Paleo on the Go, and they offered a Thanksgiving dinner along with many, many other products. My mom ordered the Thanksgiving Feast (serves 4, Paleo/AIP), which includes Herb Roasted Pasture Raised Turkey – Non GMO, soy free organically raised, grass fed, no hormones or antibiotics, pesticide free. (32 ounces), Southern Homestyle Gravy, Cranberry Orange Sweet Potato Casserole, Rosemary & Sage Pork Stuffing with Apples and Cherries, Spiced Triple Squash Medley, Mixed Braise Greens, and Cinnamon Apple Crisp. It was pretty amazing! I did not eat the turkey and the gravy, as my mom had already cooked a turkey and gravy, and it was fine for me to eat anyway. The only thing that I did not enjoy was the stuffing, as it just kind of tasted like meat and not like stuffing.

My mom also ordered Pumpkin Spice Paleo Tarts, which are kind of like Poptarts. I thought those tasted pretty good too. I actually had one for breakfast this morning. In addition to the Thanksgiving Feast, my mom ordered a Paleo Carrot Cake and a Paleo Pumpkin Pie. My favorites were the Carrot Cake and the Apple Crisp. They were delicious!

I also had some Coconut Bliss Ice Cream with my dessert. I bought three flavors: Cherry Amaretto, Coconut, and Chocolate Walnut Brownie. They are all amazing, and I love that I can still have ice cream that tastes like ice cream.

Thanksgiving is one of my favorite holidays, and I am so happy that I can still enjoy the food that I love. Hopefully, this website can help you out a little bit if you are paleo or like me. I hope that you all had an amazing Thanksgiving with your families!

 

 

Lisey

 

Side Note: I will be posting about my 2nd and 3rd Remicade infusions soon! Sorry that it has taken so long.

 

 

 

 


What to Bring to the Hospital

So I’ve been in the hospital for the past week due to a bad flare of my UC. I’ve never been to the hospital before, so I didn’t know what I was supposed to bring. I tried looking up what I should take with me, but no one seemed to have a good, solid answer for me. Hopefully, if any of you ever have to go to the hospital, this might be able to help you out.

First things first, if you are going to the ER, you can always have people bring things in for you at a later time. You don’t want to bring a giant suitcase with you into the ER. Just bring the essentials at first (things you absolutely cannot live without eg: toothbrush and toothpaste). After you get admitted, you can worry about the other stuff.

What you will need:

Pajamas- I was not given a hospital gown when I went into the hospital. They let me wear whatever I want the whole time. Pajamas are the best because they are the most comfortable. I prefer button-down short-sleeve, soft pajama shirts and soft shorts. Make sure that whatever clothes you bring are clothes that you are comfortable wearing for long periods of time. I’ve been hooked up to a TPN thing the whole time, so in order for me to change, they have to disconnect me. It ended up being much easier to just wear the pajamas you wore to bed during the day.

Two Pairs of Flip Flops- Hospital floors are really gross, so I would recommend having a comfortable pair of flip flops to walk around in. Also, I would make sure to have a pair of old, worn-out flip flops that you don’t use anymore because they are very helpful when it comes to showering. You don’t want to have to walk around with soggy shoes after you’ve showered.

Moisturizer- This one sounds kind of odd, but your skin gets so dry when you’re in the hospital! They have you shower with this super powered body wash to prevent infection, and it dries out your skin so much. I prefer the Vaseline Intensive Care Spray Moisturizer. It’s hydrating, easy to use, and it dries in less than a minute.

Hand Cream- As I said before, the hospital dries out your skin. I already have to use hand cream on a daily basis, but I use it several times a day while I’m here. I’ve gone back and forth between using two different ones here: The Aveeno Active Naturals Eczema Therapy Hand Cream and the Crabtree and Evelyn Pear and Pink Magnolia Ultra-Moisturising Hand Therapy. The Aveeno one is a product that I have sworn by for years, and it is for people who have chronic dry hands. The Crabtree and Evelyn one is something that I picked up at the gift shop, and it smells amazing and keeps my hands soft too.

Lip Balm- My lips are so dry here, and it’s really frustrating. I’ve been using the Burt’s Bees Beeswax Lip Balm for when my lips aren’t too bad, but when I need something more, I go for the Smith’s Rosebud Salve.

Skincare Routine- Your skincare routine in the hospital is a totally personal thing, but when I found out that I was going to the hospital, I knew that I was not going to get bad skin here. I will list my current skincare routine below along with all the other products I have talked about. I really like keeping up my routine in the hospital because it makes me feel like I’m still human. I have also added something to my routine since I’ve been here, so I can take a few shortcuts when I’m feeling lazy. I have been using the Burt’s Bees Cleansing Wipes, so I don’t have to worry about washing my face all the time. My skin has actually cleared up since coming here!

Hair Routine- My hair has looked pretty bad since I’ve been here, but I do still use all the essentials. I have been using a moisturizing shampoo and conditioner. I brought a brush with me, and I also brought my trust-worthy argan oil to keep my hair soft. I would also recommend bringing hair ties and bobby pins, so you can keep your hair out of your face if you want to.

Disinfectant Wipes and Flushable Wipes- Hospitals are gross, and you want to make sure that your room is as clean as possible. Disinfectant wipes are a must. Flushable wipes are necessary because the toilet paper sucks in the hospital. Also, they just make you feel a little bit more hygienic.

Hand Sanitizer- Again, hospitals are gross.

Essentials- I would also bring things like your toothbrush and toothpaste, mouthwash, floss, tissues, etc.

Entertainment- Hospitals can get pretty boring, so bring whatever you can to entertain you. Your phone, computer, and chargers are things that you cannot live without. I also have been reading some magazines while I’ve been here. I haven’t read any books, but that’s just because I haven’t been in the mood to. I know a lot of people love spending their time reading, so feel free to bring them.

A Robe and a Turbie Twist- I brought my short-sleeve robe with me, so I can use it for when I shower, and it was the best decision ever. I have a PICC Line in my arm, and it makes it a little bit difficult to move around when it’s time to shower, so a robe that does not restrict your arms is a really nice thing to have. I also use Turbie Twists at home to tie up my hair after I shower, so it was a no-brainer for me to bring mine with me. It makes everything so much easier.

Okay, I think that I’ve covered everything. I will list all of the products and where you can find them below. Knowing me, I probably left something out, so please comment if you’ve thought of anything that I’ve missed. Also, let me know what you bring to the hospital.

 

Lisey

 

Products Mentioned:

Vaseline Intensive Care Spray Moisturizer (Cocoa Radiant)

Aveeno Active Naturals Eczema Therapy Hand Cream

Crabtree and Evelyn Ultra-Moisturising Hand Therapy  (Pear and Pink Magnolia)

Burt’s Bees Beeswax Lip Balm

Smith’s Rosebud Salve

Burt’s Bees Cleansing Wipes

Turbie Twist

Skincare Routine:

Éminence Organic Skin Care Clear Skin Probiotic Cleanser

Éminence Organic Skin Care Clear Skin Willow Bark Booster-Serum

Éminence Organic Skin Care Clear Skin Probiotic Moisturizer 

This post is not sponsored, and all opinions are my own:)

 

 


Happy IBD

Hi! I decided that I wanted to create a blog about me and my IBD (Irritable Bowel Disease for those of you who aren’t familiar with the term). I have Ulcerative Colitis, and I was diagnosed about two years ago. I am very young, and I noticed that the majority of people who are writing about IBD and their experiences, are much older than me. I am a teenage girl, and I can’t exactly relate to them. I have yet to see a teenager talk to the IBD community about their experiences. No one talks about what it’s like to deal with IBD when they’re growing up. I mean, some adults have tried to speak on behalf of teenagers and young adults, but they never quite get it right. I have found myself alone at many times because I have questions that have not been answered by anyone like me. This is why I have decided to start this blog. I want teenagers and young adults to know that I know what it’s like to have to live with IBD.

I do not want to go into my diagnosis and my quote unquote, journey, at this time. To write about that would take me ages, and I just have so much that I want to say about it. I feel like I will never be able to write about my diagnosis and everything that has happened in the past two years all in one go because I am worried that I will miss some crucial piece of information. I will talk about everything separately and in much smaller sections.

I am not a doctor of any kind, and this is my personal experience with Ulcerative Colitis. It may not be your experience, and that’s okay. Nobody is the same, but I still think that I could help somebody out there. I may disagree with you, and I may do things differently than you do, and that’s perfectly normal. Crohn’s and Colitis are unpredictable and strange diseases, and everyone has to do what they feel is best for them. That being said, if you do have any questions for me, I will definitely try and answer them to the best of my ability.

I believe that we can beat IBD, but we cannot do it alone. We must stick together and help each other out whenever and however we can.

 

Lisey