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.

Comfort, Charisma, and Confidence: 3 Tips to Make Dating with IBD Work For You

By Erin Ard

Recently, I've been learning about the many strong women who have made a difference in this world. Those who have lead movements, progressed research, fought their adversity, spoke their truth, and lived their life with passion. In honor of #WomensHistoryMonth, I've been trying to find what this means for me. A single, white, cisgender woman with a voice, a mild physical disability, and a latent identity. What do I have to say?

I've been doing a lot of reflecting lately about what I can offer the #IBD community. I've been trying to think of what tips and/or tricks I live by that could make your day to day life easier. I explored my reflections but I sadly couldn't come up with many. Then I was kindly reminded of something. Though I have lived this fight with Crohn's for some time, I am still amidst my own journey. I might not have the answers because I haven't resided long enough in this level of comfort, which seems to grow every day. I am still figuring out how to catch up from the emotional setbacks Crohn's disease has caused for me and it's okay if you are too. Welcome friend! We can figure this out together.

In truth, I have had a lot of interesting experiences I could speak to, but today I will settle on one I've learned a lot about lately. #Dating.

While this topic might not be central to the life of an IBD patient, it has the potential to really impact our self-esteem and mess with our emotions. I can't say I have extensive experience with dating or have ever made it to the "sweet spot" (when you get past the "What are we?" stage and finally make it official). However, since I've been out of the game I've been using time to learn. I've subscribed to a few newsletters and watched way to many "How To" videos! How to get the man of your dreams, How to not push him away, How to get him back, How to.. How to.. It sounds silly, but it has been SO eye-opening! What was a topic I had zero input in, I now have a LOT to say about.

It's a little humorous how much we struggle over the little things in dating that should be easy. For instance, figuring out how to say the right things or act a certain way to keep someone's interest. I've realized the less we worry about these trivial things, the more successful we could be. You might be thinking, worrying "less" is easier said than done, but shouldn't being our natural selves rather than putting on a façade be the easy part?

This is just one of the many revelations I've had recently about how intuitive the dating world is and how easy we can make it work in our favor. As a woman with Crohn's disease I've had other challenges to contemplate, like how to talk about having a chronic disease to someone I barely know and how to phrase positively so I don't look like damaged goods. Because in reality, we have all learned tremendous strength with having IBD so there is no need for anyone to think this about us.

IBD is a multi-facetted disease that touches many parts of our life. It impairs some of our basic every day functioning, like being able to sit for extended periods of time without needing to use the bathroom. Personally, Crohn's disease has transformed how I go about my day. I've had to make necessary changes for my health, learn to accept my limitations as they are, or find the motivation and means to push past them.

Well, here it is my little ladybugs! Here is what I have learned about dating AND dating with IBD.

First, open up about your IBD when you feel comfortable.

Opening up about your life with IBD can get pretty personal and you might not want to get too personal too quickly. If your date asks you questions about having IBD, be honest, but don't feel pressured to divulge all your deep emotional baggage. Ultimately, deciding when you should talk about life with IBD is up to your comfort level. If you are comfortable with someone and trust their compassion, then feel free! Getting close to someone emotionally is all about balancing each other's efforts. If they give a little, you give a little and vice versa.

Opening up about your life with IBD is different for everyone. Some people are entirely comfortable with airing out their experiences, while others may be hesitant. Some people dwell on the negative, while others would rather focus on positive. It may be easier for others, but we don't need to criticize ourselves for how behind we may feel. Rather we should accept where we are, honor how far we've come, and progress at our own pace.

Second, cancelling a date doesn't have to be a headache if you are charismatic.

Dating is stressful enough and when you add IBD into the mix it can get complicated.

Imagine this: You met someone who seems perfect! They are family-oriented, charming, sensitive, and cute. You are really excited about getting to know them so you set up a date. You talked them into touring the art museum downtown and getting ice cream afterwards. But, you wake up the morning of feeling a little off. Maybe that handful of popcorn at the movies last night wasn't the best idea.. You forgot how much popcorn can set you back and you've been reaping the consequences all morning. So, what do you do?

When you have IBD, situations like this can happen often. This has happened to me quite a few times since I always forget how much my body loathes popcorn. Although my dates were never this adorable!

So, say your date doesn't understand your situation and you aren't comfortable with sharing that part of you yet. If the person is as great as you make them out to be, then they will understand if you need to cancel. Even so, there are ways to cancel a date that won't reflect poorly on your interest. Here is my personal tip, whether you decide to tell them the truth minus the details (you aren't feeling well) or make up a believable excuse (you have an assignment to finish), be cute about it! Tell them you won't be able to do tonight and add something playful, like Hey, I don't think I can meet tonight anymore. Any way we can reschedule for Thursday? I promise I'll make it up to you ;)

This way you still convey interest, make the cancellation pleasant, and give them something to look forward to - seeing your cute self :) If you have to cancel many times, it probably won't continue to work in your favor. You have to figure out what you want to tell the person. If they don't respect that some actions are difficult for you, then they probably weren't the one for you anyways. You deserve someone AS amazing and understanding as you.

Third, it's all about being confident.

If you think about it, what kind of personalities are YOU attracted to? Those who seek out gratification for their insecurities or individuals who are comfortable with themselves and radiate positivity?

Here is my personal tip on getting started with confidence. Practice talking about how IBD affects you. Have this conversation with yourself, open up, be honest and focus on what value it has brought to your life. For me, having Crohn's has brought me closer to my family and friends, it has taught me strength and perseverance, and has given me a purpose. Since being diagnosed I have focused on my overall health and sought out knowledge to help others be healthy and embrace their whole self.

The notion of confidence became more inviting for me once I realized it can be learned. Being confident is an attitude and it is relatively easy to implement if you are proactive in changing your mindset.

♥

I hope this article can help shift your perspective of dating with IBD to a positive headspace. If you take one thing away from this, I want you to know the key to successful dating is knowing and appreciating yourself. Once you learn how to do this, all of the tedious details we tend to wrap ourselves in won't seem as unmanageable. I can't say enough about how the simple act of being compassionate with myself has helped me grow. I hope to become as strong as the women I've been learning about this month and to pass this strength to all of you.

Each of us is strong in our own way. IBD challenges us to be even stronger.

With love,

Erin

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

5 Things to Know Before Flying with IBD

By Leah Clark

Having just returned from a trip across the country, several travel tips about flying with inflammatory bowel disease are fresh in my mind. Whether your chronic condition is active, in remission, or anywhere in between, these five tips can help make traveling with #IBD a lot smoother and ensure that you can be prepared, calm, and have fun on the way.

Flying with IBD shouldn't have to feel like a constant state of turbulence. Follow these simple tips to ensure that your flight is a breeze.

1. Know Your Surroundings

Many people with inflammatory bowel disease need to take frequent trips to the bathroom, and that can be difficult when put into an unfamiliar environment. Fortunately, most airports have bathrooms near every gate, as well as maps that can direct you to the nearest one. If you are concerned that you will need to use a bathroom and do not want to have an accident, try and stay near a restroom until your flight is boarding. Some airports have private bathrooms as well with one stall that can make going more comfortable.

2. Prepare Your Own Food

As someone with a #restrictivediet, I know how hard it can be to find food I can eat at an airport. Airplanes and airports often have processed foods that can be prone to cross contamination, as well as a limited selection of foods that are not nuts, chips, and sugary snacks. If you're like me and need to be cautious about your diet, I recommend packing your own food and keeping it in your suitcase until you are ready to eat it. Just make sure the items follow the TSA guidelines.

3. Pack Medications Strategically

Following a tight #medication schedule can be difficult if the medication is not easily accessible. It's important to pack your pills in a small travel carrier or pill box that can be brought on the plane in a carry-on bag. This way, your medication will be with you at all times and available for you to take it when needed. Be sure to have a beverage on the flight, or purchase one after going through security if you need to drink a liquid with your medication.

4. Choosing the Right Seat

Lucky day when you get a whole row by yourself, but choosing an aisle seat can also be a good choice.

Certain airlines, and depending when you purchase your ticket, will allow you to choose what seat you want on the plane. If frequent bathroom breaks is common for you, I recommend scheduling your flights earlier than later and choosing an aisle seat. This way, you will not have to climb over people or waste more time reaching the bathroom. If you cannot choice an aisle seat, it never hurts to ask the person next to you if they are willing to switch.

5. The Day Before

With IBD, sometimes we overlook some of the basic health necessities that need to be addressed: sleep and hydration. Fatigue and dehydration are not new concepts to us, and it's important not to forget about these when traveling. Getting a good night sleep before the trip, as well as drinking plenty of fluids is very important. It's a good idea to take a nap on the flight (if able) and drink water while in the air, as well, when the travel day actually arrives.

Everyone's IBD is different and requires unique attention and care. It's important to know your body and know how travel affects it. Your IBD should not hold you back from living your best life and going wherever you wish. With these five tips, hopefully you will be better prepared and ready for whatever life in the air has to throw at you.

Love Yourself and Love Others: How I Started Recognizing the Support Within and Around Me

By Erin Ard

In honor of the month of #Love, I decided to write about one of the most important forms. #SelfLove!

Embrace every part of you. Your quirkiness, your sense of humor, your shyness, your health (and that sometimes, you CAN take a good picture).

You've probably heard the phrase "You can't love anyone else until you love yourself." It's said, with good intent, to almost everyone who is trying to find self-worth in another person's eyes. I am no expert on love, so I can't say this is always true. However, I do know that dealing with chronic disease, especially throughout your teen years, can wreck your self-esteem and ability to love yourself. *Ahem* speaking from experience.

I want to share how I learned to accept the terms of my new life, let go of internalized negativity, and love myself as I am. It took me years to recover emotionally from all the changes I faced because I never fully accepted that I had a #ChronicDisease.

I started to take strides in college when I began thinking mindfully about my experiences, emotions, and actions in every situation I faced. Introspection was my first step towards acceptance and being #mindful was my strategy.

I used mindful meditation to reflect on everything in my past and present. I became aware of my thoughts, emotions, surroundings, and accepted them without judgement. It helped relieve my stress as a busy student and appreciate everything around me while living moment to moment. Before mindfulness, I would often dwell on my flaws and insecurities, to the point that I had lost sight of my worth. Now, whenever my mind wanders or spirals, I accept my thoughts, bring light to them, and move on. The simple act of being mindful restored my self-confidence and helped me find my identity outside of my chronic health issues.

A little surprise from my sweet, forever valentine.

As I sit, writing in my old bedroom from high school, I'm starting to reflect on all the love I had even at my lowest. I now recognize the love I lacked for myself and the support that surrounded me from family and friends. My closest friends and family understood me and how the disease affected me. Because of them, I was able to overcome many trying events.

This month, my #mantra has been to love yourself and love others. I've learned that you're never really alone, even when you think you are. There is always someone thinking about you, worrying about you, or just wondering how you are. You will be surprised by the influence you can have on others. As a cute example, take a look at what my little brother made for Valentine's Day!

Remember to appreciate your own strength and the people who continue to support you.

---

If you want to learn more about the influence of mindful practice, check out this article on the stages of grief in chronic disease.

With love,

Erin

In the Name of Love: The Importance of Having a Support System

By Erin Dunne

Stomach cramps, constipation, diarrhea, fatigue, low FODMAP diet, gluten-free diet, dairy-free diet, little fat, no sugar, no caffeine, MRIs, CT scans, GI exams, Prednisone, Remicade… the list goes on and on. If you have #IBD, the chances of you encountering at least one of these things at some point in your life is very high. Some individuals have what can be seen as "easier" cases; they are put on a single treatment plan that keeps their symptoms at bay and may even lead to clinical remission. There are others that may jump from treatment plan to treatment plan without seeming to find one that ultimately works for them. Each journey of somebody with IBD is unique, and while we can empathize with others and find comfort in similarities we may share, it is easy to feel alone in this adventure. Despite frustrations we may feel at any given point, it is essential to establish strong relationships to lean into and lift us — relationships with friends, family, professors, and ourselves.

Through love, even the impossible seems practical, and with a disease that is so unpredictable, this rationale is comforting.

I have had Crohn's Disease for thirteen years now, and I can honestly say that through the years, most of my strength has been obtained through my relationships with others. For many years, I was one of the fortunate individuals that often did not feel as though I had an illness. I took two pills a day, was not restricted to a specific way of eating, and experienced few symptoms. Compared to my friends around me, the only difference between us was that I had to take medicine at certain times of the day and had monthly doctors' appointments. Despite these minor differences, I still felt isolated from others my age. In my world, I was the only person I knew with IBD and had no idea of the various severities of the same condition. It wasn't until I attended Camp Oasis- Michigan that my eyes were finally opened, and I no longer felt alone in this journey.

My third summer at Camp Oasis. Can you spot me and CCYAN Admin, Sneha?

Throughout my time at camp, I met so many people with different stories, and I was fascinated by every one of them. Not only was it wonderful to be able to relate with others my age but also to idolize the older campers and counselors for how strong they were. I returned to camp for four summers and connected with so many lovely individuals throughout the years that have helped shape my life; some of which I still am in contact with!

I highly recommend trying to include people that have experienced IBD into your support system because not only do you gain more love in your life, but also people that get what you're going through! If you're anything like me and don't have family members or friends that are familiar with the disease, it can be hard to share stories, concerns, even successes without feeling like they're not entirely understood. (Sorry mom for the various bowel movement updates, but thanks for listening!) Getting in contact with others can be very easy! Communities like CCYAN, CCFA, Camp Oasis, and any groups through universities, hospitals are all great places to start. While each story is different, we are far more alike than you would think.

---

Although I mentioned earlier that I had considered myself lucky to have an easier time with Crohn's, the past two years have been anything but that. With being on the same medication for most of my life, it stopped being effective and could no longer support the inflammation in my system. I have been dealing with a reoccurring flare since and have gone through various forms of treatment to try to tame my symptoms. At first, I had become more aware of food intolerances, often experiencing diarrhea, severe bloating, and severe stomach cramps. Through trial and error, I have found a diet based on whole foods (vegetables, fruit, fish, poultry, nuts) makes me feel my best but I am still finding things that do not agree with my body (rip mangoes… you will be missed). I am currently taking Humira but am exploring other medication options. Even with all of the changes I have implemented to ease my symptoms, I know I can experience much better and strive to heal my body as much as possible.

---

I would be lying if I said I was always hopeful during this process of finding a treatment that my body reacts best to. There have been times I have broken down due to being so frustrated with not seeing or feeling any improvement; sometimes I can feel as though I am my childhood self upon the first diagnosis, scared and alone. At my lowest times, it can be easiest to isolate myself and wallow in my self-pity, but luckily, I have learned that my support group of friends and family, although they can't relate on a personal level, are always there to listen and help to the best of their ability. Being away from home for school, I am not able to lean on my family as much as I would have in the past. Although I have always been independent, it is comforting to know that I have loved ones around that are there for me through my struggles and my successes (never underestimate the power of a hug). I have been blessed to find another form of a family at Spring Arbor through wonderful friends that I love with all of my heart. Even though we have not known each other long, it is as though I have known them a lifetime. They go through my problems alongside me, help me come up with solutions, and act as my parents when I am sick and unable to leave my dorm room.

A few weeks ago, I was experiencing terrible symptoms; I was trapped in my bathroom the majority of the weekend and did not have much of an appetite. My friends knew I was not able to walk to the Dining Commons, so they took it upon themselves to bring me bananas and easy to digest, bland foods. Another day, I had expressed frustration with not having a doctor at the moment and feeling as though my current treatment plan was not working. My friend spent her afternoon going through scholarly articles and websites to find information on healing diets, fixing nutrient imbalances, and alternative healing techniques. Other times, when we are eating out or visiting someones home, they make sure I have something I will be able to eat. To say I feel loved and fulfilled is an understatement! I cannot stress enough the importance of having a support system in your life.

---

Whether you're currently dealing with IBD, mental illness, body image, etc, being able to express love for others as well as receive love from them is beneficial for your brain and your well-being! It does not matter what the size of your support system is or who is in it, as long as these individuals support and love you and are positive additions to your life. I hope while reading this you have thought of a few people that are currently in your life that help you each day, even in the littlest way. I encourage you to reach out to them and let them know how much they are appreciated! If you have interest in growing your circle or want to start one, as I have previously mentioned, there are plenty of ways to get involved and meet people from your area, different states, and even around the world. The ladies at CCYAN would love to hear your stories, connect with you and help in any way possible. Feel free to contact me with any questions, or if you simply want to talk!

Stay Lovely,

Erin

New Year. New Experiences.

By Erin Ard

Hi everyone! I wanted to kick off this new year by sharing more about me, my experience with #IBD, and my goals being one of your IBD Fellows!

For a snap-shot of my life, I love creative writing, drawing, vamping up old furniture, and DIY projects. You can usually find me watching a romantic comedy with a glass of wine, playing Mario Party with my roommates, cooking up new healthy recipes from scratch, or camping at my parent's trailer in central Wisconsin. I am terrible at taking pictures, so I rely on my friends to document our adventures. I love everything about fall - the comfy sweaters, jumping into piles of leaves, and pumpkin spice flavored coffee drinks. I found a love for human ecology and nutritional sciences when I attended University of Wisconsin - Madison, #GoBadgers! I have a passion for helping others live a healthy life, especially people living with a chronic disease. I am 23 and I've been living with Crohn's disease for 10 years now.

Crohn's has had a great impact on how I live my life. It has taught me a lot about myself and as much as I like to think otherwise, still affects me today. Many of my symptoms have faded but I can name a few that decided to stick around. Hip joint pain, gut pain, fatigue, random short-lived fevers, anxious thoughts, and more. Although, I'm still trying to figure out if and how Crohn's plays a role in my anxious tendencies.

I've been on Remicade for 9 years, so its normal to see small bruises on my arms from IV tubes and getting blood drawn. One of the many perks of living with Crohn's is having people point out or question my colorful arm bruises :).

Aside from medication, a healthy, well-balanced diet has been my focus since I was diagnosed. I also try to incorporate other practices to make a healthy lifestyle for myself. I have adopted mindful practice to discern any connections between Crohn's and my mental health. It has also been a great way to manage stress, especially while I was an undergrad. I also try to stay fit by doing fun exercises! For me that is yoga, Pilates, dancing, hiking, running, you name it! I strive to keep both my body and mind strong.

Although, IBD will manifest in everyone's bodies a bit differently and everyone will have different life experiences, I believe we can all learn from each other. I don't know many people with IBD and haven't had much of a voice in the IBD community yet, so I joined the CCYANetwork to connect with others and share my views. I am using this platform as a way to connect with you and find peace by bringing this source of insecurity to the surface. I hope some of you will find thoughtful inspiration from my stories.

With love,

Erin

How to Cope With a Chronic Condition at College

By Sneha Dave

It wasn’t until the last couple weeks of high school that I realized the coming year, my first year of college, I would be on my own. My network of support and my parents would not be nearby.

As I sit in a coffee shop in the District of Columbia, I can't help but reflect on this past year, my freshman year of college. It's a transformative and influential time for most, and I can certainly say that it was more than this for me. I learned how to navigate the waters with my chronic condition, and once again I realized the importance of resilience to tackle both successes and challenges.

After living with a severe form of ulcerative colitis for more than 13 years, this was the first year I did not have my parents with me for every abdominal spasm and procedure. The transition was out of my comfort zone, but it taught me about independence. Below are some of the highlights of the year, as well as tips for living with a chronic condition in college:

Visit Disability Student Services before school begins. My mother pushed me to talk with the DSS services at my school so I could be established before I entered my freshman year. I wasn't too worried about registering with DSS, as I did not feel as though I would need it. In reality, DSS was a critical part of my school year. Registering before school starts is important because, after the beginning of school, there are a number of other things a student will have to worry about. The process is lengthy and it may require several phone calls to a physician's office. One of the perks of registering with DSS is that you can request a single room, which was a lifesaver for me, as I realized with my flare-ups.

Take the time to educate and communicate with your professors. If you've lived with a chronic condition for a number of years, this is probably something you already have experiences with. At the beginning of the year, I struggled with many episodes of inflammation and woke up some mornings with a feeling of paralysis in my abdomen. Subsequently, I missed my 8 a.m. class and lay in bed (in quite a bit of pain, I should add) and emailed my professor immediately. I was lucky, as my professor was always accommodating and willing to share notes, but having an upfront communication made it easier. It's often best to talk to your professor during the second week, after back-to-school commotion has eased.

It's OK not to tell everyone about your illness. The people I spent all of high school with knew of my history of being sick, but in college, almost everyone was a stranger to my illness. The second semester of freshman year I had a medical procedure every week, sometimes twice each week. While I am a huge advocate for people with chronic conditions, I find it challenging to tell people about my condition, because I really don't like the accompanying sympathy. Most of my peers are not aware of the medical challenges I lived with this year. On the whole, it's a good idea to educate your peers, but it can often be repetitive to have to explain every small detail.

Everything will not go as planned. I really struggled with this, as I wanted my freshman year to be pain- and symptom-free. I remember I was put on a high dose of antibiotics, which decreased my inflammation but caused a wave of new symptoms, including severe appetite loss and constant fatigue. Subsequently, I spent some more time getting evaluated at the Cleveland Clinic than I would have liked. I found myself constantly trying to develop time strategies to deal with my chronic condition, taking classes and managing a boatload of extracurriculars.

Don't let your illness be your excuse. The reality is unfortunate, but at the end of the day, very few people will take into account your struggles with chronic health conditions as you navigate schoolwork. I found myself having frequent spasms and still working very hard on a biology test. You may have to make some sacrifices in order to get extra rest or to catch up, but it can be done.

Learn to navigate around dining hall food. There's a way to bypass dining hall food and instead keep a refrigerator with food that you're able to tolerate. I have a very complicated diet, and the dining hall at my university was not able to accommodate my needs (understandably so, as my diet changes every few months). I had my doctor send a letter so that I could provide my own meals.

It's OK to feel alone – and remember, it's all a learning experience. Many of us have been fortunate to have our parents drive us to procedures and wait with us. After having a few visits to the Cleveland Clinic, I was prescribed treatment that required me to see a health care specialist at least

once a week at an office near my campus. I often went to my procedures in between classes and came to my next class half asleep. It was a new learning experience for me, as I did not have family right there with me.

Freshman year was quite a learning experience for transition. While I often felt overwhelmed with my illness, I ended up learning quite a bit with support from a distance. I encourage all college students with a chronic condition to find ways to ensure that your illness will not stand in the way of your goals (something easier said than done, but it is possible).

Content originally created for U.S. News and World Report. Find the original article here: https://health.usnews.com/health-care/for-better/articles/2017-08-02/how-to-cope-with-a-chronic-condition-at-college

How to Live With Food Restrictions

By Sneha Dave

Tips for avoiding off-limits foods your body can't tolerate. Even when your taste buds crave them. 

GOING TO THE MOVIES IS excruciating – not a typical statement for a teenager to make. I can’t ever concentrate on the film, only the sights and sounds of others eating the favorite food I haven’t been able to consume in years: popcorn.

Restricting or cutting out certain foods can be extremely difficult for those of us whose bodies can’t tolerate them. Diagnosed with debilitating ulcerative colitis at age 6, I have learned to navigate a world of dietary minefields. But armed with these strategies, I have learned to combat cravings for things that could wreak havoc in my body.

If you or someone you know is struggling to avoid off-limits foods, here’s what works for me:

1. Find alternatives. After a grueling two weeks in the hospital, a nutritionist visited me at age 12 for a serious talk about my new dietary restrictions. Corn – in any shape or form –was out of the picture, as were many mouthwatering foods such as tacos, pizza and ice cream. The worst part? After reading nutrition labels, nearly everything on grocery store shelves seemed to have the very ingredients I couldn’t touch. So instead of eating those cheese puffs I loved (which had cornmeal) we searched around for a good replacement. Rice puffs, it turns out, taste very similar. It helps a lot to make small substitutions that still keep things “normal.”

2. Visit a health nutrition store. Not everything I used to eat can be replaced with a direct alternative. That’s why I’ve found it helpful to pick out foods I like that don’t cause issues and aren’t substitutions for something else. Many health food stores seem to cater to people like me who must avoid certain foods for health reasons, and tend to sell products with clearly labeled ingredients. It helps to be able to quickly rule out a food before falling in love with it.  

3. If you are going to a restaurant or a party, know your limits. I remember going to several parties and having to practically bite my tongue to avoid foods that looked so good but I knew would cause trouble. I still wanted to be social, and didn’t want to skip events just because of my limited diet. So instead, I found it helpful to eat before the events, which would lessen my cravings for foods my body would sorely regret. I did eat at the events, but picked things that were safe and in bite-size portions.  

4. Learn and understand your body. At times, I wanted so badly to stuff myself with all the popcorn and Mexican food my body could take. Even at a young age, I was forced to understand my body and learn the severe consequences certain foods could have on me. Food restrictions are a lifelong reality for me that change every so often. I know this and have suffered before from ignoring this reality. Today, at age 17, I know it’s important to trust yourself to make the right decisions no matter what situation you’re in, but to identify and avoid temptation triggers.

5. Know you’re not the only one. Being mentally strong is one of the toughest parts of living with food restrictions, especially for people with a long list of banned foods. But there are others out there who are facing the same challenges as you. Being able to connect and network with others is a huge step to being able to adapt successfully to a restricted diet.

6. See a professional. When my diet was at its most restrictive, it was difficult for me to even find online resources with useful guidance. Consulting with a dietitian or nutritionist who could help me plan meals for the week made all the difference, so that my parents and I didn’t have to spend all our time checking products for offending ingredients. The professional also made sure I was getting all the daily nutrients that I needed, which can be very tricky on a restrictive diet.

7. Stay away from dangerous foods. My family was extremely gracious in supporting me through all of my dietary adventures. They basically did the diet with me. This made it easy: “Red-alert” foods were not in my environment and thus cravings became significantly less. If your family or housemates are understandably unwilling to live without their favorite foods, then at least ask them to please keep them out of your sight.

Although food restrictions may be horrific to deal with, they certainly build psychological courage. Throughout my experience with many diets and food restrictions, I have found that with experience, conquering food cravings becomes easier. Over time, the foods that cause you trouble may change as well, so it’s worthwhile to revisit them periodically. You might once again be able to eat that beloved meal. 

Content created for U.S. News and World Report. Find the original article here: https://health.usnews.com/health-news/patient-advice/articles/2015/06/18/how-to-live-with-food-restrictions

Julian Kritz: A law student at the University of Virginia

For Julian, it began with a swollen ankle.

I was a healthy and well adjusted eight-year-old. But then at age 8 my Dad noticed that I had a swollen ankle. It was not the result of any injury and so we went to see a doctor for an explanation. Initially, it was thought to be a sign of juvenile arthritis but that diagnosis was short-lived. I began having additional symptoms that fell outside of an arthritis diagnosis. I began having intense stomach cramps, bloody and atypical bowel movements, and intense nausea and vomiting. Some of these symptoms I self-reported, others I did not. However, there was one symptom that I could not hide from anyone – that of growth failure. Prior to these symptoms, I had been well-sized, perhaps even on the bigger side for my age. That all was to change. I completely stopped growing and for many ensuing years found myself to be the shortest in my grade. The growth failure led us to seek out an endocrinologist, who after reviewing my blood work referred me to a pediatric gastroenterologist. Through a colonoscopy an a biopsy, the GI doctor confirmed what was already suspected; at age 11 I was told that I had Crohn’s Disease.

"In short, I was angry, withdrawn, and in absolute denial."

To say that I responded emotionally poor to the diagnosis would be an understatement. I remember my parents trying to share resources with me about my disease. They tried to get me to engage with kid-friendly educational websites that explained what living with Crohn’s would be like. I refused to even glance at the webpages. They tried to get me to go to a camp for kids with Crohn’s; I rejected the proposition out of hand. In short, I was angry, withdrawn, and in absolute denial. Around the time I began treatment, which consisted of driving forty minutes to receive a Remicade infusion every four to six weeks, I started acting out in school. My disease, and my corresponding smallness, made me feel unbelievably insecure. Compounded with the awkwardness that is middle school, I struggled to form a coherent social identity outside of being the class clown. I became riddled with anxiety and began to suffer from insomnia. I also got in more and more trouble at school, eventually culminating in an out of school suspension my eighth-grade year.

"Struggling to keep up on the field, I found that I could no longer rely on sports as a prime facet of my identity."

As I entered high school I was responding well to treatment (the Remicade effectively induced remission), however I was still struggling to deal with the Crohn’s precipitated growth failure and delayed puberty. Outside of being a class clown, my identity had longed been defined by sports. But when I began competing in sports at the high school level, against fully developed eighteen-year-olds, my small size put me at a severe disadvantage. Struggling to keep up on the field, I found that I could no longer rely on sports as a prime facet of my identity. I had to give up the class clown routine as well; classroom disruptions were no longer seen by my peers as funny. Bereft of identity and still deeply insecure, I turned to partying to connect socially. I began drinking and smoking weed occasionally. By the time I was a senior, the smoking was a daily and the drinking a weekly occurrence. From a Crohn’s perspective I was doing superb, my disease was still in remission and after years of daily growth hormone shots I had finally hit puberty and my growth sport. But from a mental health standpoint, I was in a bad way. I was becoming increasingly reliant on weed and alcohol and other parts of my life began to slip. My relationship with my parents deteriorated, as did my grades and athletic performance.

"Things immediately spiraled out of control and I found myself hospitalized for a few days – not because of anything to do with my Crohn’s but rather because of my poor mental health and addictive behaviors."

Somehow, I survived my senior year relatively unscathed and headed off to college in New Orleans. Free from my parents supervision, my alcohol and drug use increased immensely. Things immediately spiraled out of control and I found myself hospitalized for a few days – not because of anything to do with my Crohn’s but rather because of my poor mental health and addictive behaviors. I limped to the end of the semester but was in so much trouble in school and was in such an unhealthy place that after some serious pressure from my parents, I agreed to go to substance abuse treatment. So, at eighteen, I flew to Minnesota and entered a youth treatment facility. That was the first time that I began to reflect on my childhood and realize how astray I had gone. I swore off alcohol and drugs and began to reconnect with myself. After intense months of self-reflection and rebuilding work, I enrolled in a college in Minneapolis.

Two years later, I graduated from college. I had transformed from the insecure teen. Now, I was a confident and healthy twenty-one-year-old. Not only was my Crohn’s under control (I was now taking Humira) but my mental health and addictive behaviors were as well. After working at a law firm for a year, I was accepted into law school in Virginia and my long-term girlfriend and I moved down there together.

"I wish I could travel back in time to tell that insecure, anxiety-ridden eleven-year-old Julian that everything was going to work out okay."

I am just beginning my first year of law school and am truly living a life beyond my wildest dreams. I wish I could travel back in time to tell that insecure, anxiety-ridden eleven-year-old Julian that everything was going to work out okay. While that is not possible, it is possible to share that message with all the young teens that are today struggling with Crohn’s and subsequent mental health issues.

That is why I am involved with the Crohn’s & Colitis Young Adults Network - to share that message of hope that things do get better. I am living proof.