What to Expect When a Loved One Gets Diagnosed with IBD

Navigating an IBD diagnosis is not easy. It can be messy and emotional and very tiring. The person diagnosed with IBD will be feeling many emotions, probably all at once. But it’s not just hard on the diagnosed individual; it can be very hard on their loved ones as well. It can be difficult to figure out what to expect and what to say and how to act when you find out someone was diagnosed with Crohn’s disease or ulcerative colitis. Hopefully this article will provide some insight into what to expect when that diagnosis happens. 

The first few hours and days after your loved one gets diagnosed with IBD can be very confusing. You are processing their diagnosis, while trying to be there for them as well. While everyone processes it differently, there are likely some common reactions you can expect. Here are a few things to keep in mind:

• Be prepared to simply be there for them. Whether they want to talk about it or not; whether they want you to accompany them to appointments or infusions; whether they want someone to sit with them while they are sick. And even if they don’t want any of that, make sure that they just know that you will be there if/when they do. Be there for them when they are ready to talk to you. Tell them you are there if they need anything and be ready to back it up with your actions. There is nothing worse than empty words. 

• Be prepared for them to become experts on their own bodies. They will become very familiar with their symptoms and will likely know when something is not right. Learn to trust that. If they tell you they think something is wrong, don’t try to argue with it. 

• Be willing to learn with them. For me, I read up a lot on my diagnosis. I read others’ stories, I read articles, I read medical journals. And I wanted my friends and family to understand some of what I was learning. So, be willing to read the articles they send you. Educate yourself on their disease. Don’t be afraid to be educated. 

• Be ready for the hard days. The days when their medication isn’t working. The days when their Prednisone is making them miserable. The days when they are in the hospital. Not every day will be hard, but some will be. So be prepared when they come. Remind your loved one that it won’t last forever. 

• Also be ready for the good days! The days when they find out they’re in remission. The day when they try a food they haven’t been able to eat in a while and it goes well. The days when they feel like themselves. Just as the bad days come and go, the good days will come, too. 

• Be ready for the doctors’ appointment. Especially when your loved one is first diagnosed and they are working to get control of the disease, there will be a lot of doctors’ visits. There will be ER visits and hospital stays. There might be infusions they have to go to on a regular basis. They may or may not want you to come. Be ready to support them either way. With COVID, they may have wanted you to come and you may not be able to. If that’s the case, try to get creative with ways to make them feel like you’re there. FaceTime them, call them, text them. Do something to make them not feel so alone. 

• Ultimately, be ready for a journey. It isn’t always easy and there will be really hard days. But your loved one is now part of a community that is welcoming and ready to help when they want. There will be people that they can relate to and that can understand them in ways that someone without IBD can’t understand. Encourage them to reach out to people they see on social media. Encourage them to ask questions and not be afraid to speak up. The IBD community is a great one and people are always willing to help! 

Navigating a loved one’s IBD diagnosis can be a daunting thing. It is a lot to process and there is a lot of unknown. But by just being supportive and being attentive to your loved one, things will probably go a lot better than you expect them to. 

Emotions and IBD

There are a lot of emotions that come with the diagnosis of any chronic illness, or even any major life change. But laying on the operating table, under the haze and fading twilight of the anesthesia medication exiting my veins, I felt nothing. The echoing silence of the room was heavy all around me. I expected to feel an overflowing stream of emotions flow over me, but instead the most striking sensation of my diagnosis was emptiness. It could have been the drugs dulling my system and my perception of the world. Yet, over time, I’ve started to think that the cause of the void-like feeling around my diagnosis was something incredibly real, and not artificial. The feeling of change is oftentimes so big that it feels like nothing. 

In that hospital room, so much had changed with a simple test. The scale of the moment was beyond comprehension. My parents and I communicated without words, because anything that could have been said would have failed. All the periods, letters, and adjectives in the world would never be enough to frame that point in time. So, somehow and instead, I just knew that I had ulcerative colitis without being told. Shock, and the whole experience, was such a surreal feeling. To know that something has snapped, or broken, or ended, but to be unable to directly confront that realization is off-putting. It was easier to not speak the change aloud, because to speak it into the world would make it extra real. 

In the weeks after my diagnosis, it was as if a light switch had been switched back on. All of the fear, grief, and anger I had missed earlier suddenly now surrounded me. The trauma of illness is such a widespread and varied experience, but it can be difficult to describe and discuss. It’s isolating to feel different, and to feel like you’ve lost a piece of yourself. Health is something that most people take for granted or don’t think about. So when it’s taken away from you, its absence becomes the dominant part of your everyday life. The shift in my lifestyle to one focused on health had a significant impact on my mental health. I was in an environment, my freshman year of college, where everyone seems to be testing the limits of their independence. Thus, to feel completely dependent on my unstable day-to-day health felt unfair and tragic. 

It’s a challenge to have the energy to battle painful, and draining symptoms on a daily basis. I learned that adjusting to my illness, and all of the treatment that comes with it, was a major part of my healing journey. On top of that, I realized that acknowledging the emotions I was experiencing was an important part of accepting my illness. It’s normal and natural to be angry, to grieve, and even to be nostalgic for your life prior to diagnosis. In fact, for me, it was the first step towards opening up and connecting with others in the chronic illness community. My experiences, feelings, and my relationship towards my health has been full of highs and lows. Most of all, I’ve learned that the negative and positive emotions I’ve encountered from dealing with illness are all valid. They’ve helped me grow, learn, and evolve as an individual. Every journey is different, and that is perfectly okay.

What have you experienced as an IBD patient because of the pandemic?

Photo by Bruno Cervera from Pexels

Today the Crohn’s and Colitis Young Adult Fellows joined together to share what they’ve experienced as an IBD patient during this global pandemic. So we asked our fellows how they have been affected by the pandemic as IBD patients and this is what they want to tell you!

---

“Thankfully, I’ve not had too many problems during the pandemic. My IBD is relatively well controlled at the moment, but I still fall in the group of people in England who are strongly recommended to stay at home, because I am immunosuppressed. Therefore, I haven’t taken any chances. I was able to get my medications delivered to the house, and I now have weekly food deliveries too - though trying to get a slot is harder than you think! My regular follow-up appointments at the hospital have been cancelled until further notice, but I am doing okay at the moment so there’s no need for their input. I have the IBD helpline and email address should I need them - but hopefully not! The only other problem I’ve had is arranging for my three-monthly vitamin B12 injection, which I’ve had for around 10 years due to malabsorption. My surgery has deemed this ‘non-essential’, and are only injecting those with consistently low levels. Clearly, I don’t fall in that category, because I’ve been on regular treatment for so long. They have suggested oral supplements which I would need to buy myself, but the problem of malabsorption - so the supplements are unlikely to be of any benefit.”

Simon Stones

“Though I am not on any immunosuppressive medication, I have felt heightened awareness of the fact that I have an autoimmune disease and an overactive immune system in general. When I realized how serious the pandemic was, my anxiety spiked not only because of the reality that was to come but regarding how many people dismissed the repercussions of proper, careful social distancing or #stayinghome. I was lucky that I was able to communicate with my GI provider and get refills of medications I use during flares and on a regular basis without having a last-minute visit. I only leave my house for essential needs such as groceries (once per week max), prescriptions or to get out of the house to exercise so I can regroup physically and mentally.”

Rachael Whittemore

“As someone who is immunosuppressed, I have been experiencing heightened anxiety because of the pandemic. I have been fortunate to work from home and have the privilege of having family nearby that can transport my groceries to me, but that being said, I still feel the fear and frustration upon seeing the news every day and knowing that there are many people who are not taking this as seriously as I feel they should. I began isolating before the quarantine was in full swing, because of my compromised immune system, and have only been in public to go to the pharmacy drive-in (while wearing a mask of course!). I am trying to channel my anxiety into healthy outlets, such as my art, to avoid prompting a stress-induced flare. All I feel that I can do at this time is stay at home.”

Lucy Laube

“As someone with IBD who’s living in a developing country, the major challenges stem from the lack of robust health infrastructure. Thankfully, I’m not in a flare and neither am I on any medication. However, I do have an ileostomy which requires constant maintenance. I have been facing difficulties in acquiring bags and other components of my ostomy. Luckily, I was able to procure a small amount of these components before the lockdown, but at an inflated rate. I’m also having difficulties procuring basic things like cotton and micropore tape. This keeps me in a constant state of anxiety. I am constantly checking apps to see if I can get the essentials at reasonable rates. Additionally, there is no easy access to any form of basic healthcare in case of an emergency, and that makes me nervous.”

Nikhil Jayswal

“To already live in a body and in a life that inherently holds so much unknown and vulnerability when it comes to my health, and to have that sense of uncertainty that constantly exists within myself now amplified throughout the world, to have that unknown intensified to this extent, has brought even more challenges and emotions to the surface. It feels like the unpredictability that comes with living life with a chronic illness has multiplied tenfold. I am immunosuppressed, and the only time I have gone anywhere except for my house or my backyard was to get blood work taken to check on my levels. While every precaution was taken in doing so, and it is a privilege to have such access, it was still an anxiety-ridden experience. I am incredibly grateful that I am not currently flaring and that I have the ability to be in contact with my GI provider through telehealth services, but I think it’s important for people to realize that IBD doesn’t just “stop” or “slow down” during a pandemic.”

Rachel Straining

“As someone who is immmunocompromised due to the medications I am on, I am always cautious of when I go out and am in large groups of people. With the pandemic, this caution has increased tenfold. I am fortunate enough to be staying with my parents right now. They go grocery shopping so that I do not have to go to the stores. I limit the number of places I have to go. When I do go out, I wear masks and gloves. I come home and immediately put my clothes in the washer and take a shower. I sanitize everything that I buy. When I’ve had to go for my infusions, I have to go through multiple check points to ensure I do not have the virus. All of my doctor appointments have been virtual. Although my health is not perfect right now, I am thankful to not be flaring like I was at this point last year, as I was in the ER every couple weeks. While the rest of the world seems to want to jump into reopening, I get anxious thinking about the ramifications of opening too soon. I cannot control how anyone else responds to this and who follows quarantine and who does not. But I can continue to do my part and stay at home.”

Samantha Rzany

“When you live with a chronic illness, you’re often forced to make compromises for your health. You have to take on a second job as the captain of your health. Since the pandemic began, navigating the healthcare system has become more difficult and uncertain. Chaos is a part of any illness that remits and flares, but when chaos is the defining state of the global world, it can cause undue stress. Personally, I’ve had to postpone doctor’s appointments, and alter my treatment plan to cope with our new reality. It’s been difficult to choose not to participate in activities I enjoy doing, like socializing with friends, but I know that I have to make sacrifices to protect my health and the lives of others. While I cannot eliminate all risk, I am trying to minimize my stress and focus on what I can control. I am taking precautions, such as wearing a mask, and going out for only essential needs. The entire experience of the past few months has brought health to the forefront of the public’s attention. I am hopeful that it will improve the public discourse on chronic illness, and lead to more resources in the health sphere. After all, public health is a collaborative effort, and not an individualistic one.”

Grady Stewart

As someone who is immunocomproised, I carry around the stress of potential sickness anxiety with me. Before the pandemic, I have always been transparent with people in my life about my need for them to stay clear of me if they are not feeling well . This advocacy that I was working on getting good at is now amplified x3. My remicade appointments have carried on, first I couldn’t bring anyone now I am allowed to and it’s back to normal. I feel isolated and lonely but thankful for my roommates who keep me company and my cousin who drives me to the grocery store. For me, it has been a major trigger to have the topic of conversation constantly be of health and healthcare. My hope is that this will bring a new normal. That together we can collectively make workplaces schools etc more accessible for all and that there is now a general awareness and understanding for the immunocompromised community.

Amy Weider

---

00-12 in 12 Months

This article is sponsored by Gali Health.

---

By Samantha Rzany

Ulcerative colitis is described as, “a chronic, inflammatory bowel disease that causes inflammation in the digestive tract”. And while most of the symptoms associated with IBD take place in the gut, some of the hardest and often most shameful ones take place elsewhere in the body. While most people know about my struggles with IBD, very few know about the subsequent issues that accompany my disease.

I’m someone who was always fairly thin and had a pretty fast metabolism. I never really struggled with my views on my body and was always pretty comfortable with my weight. I had seen numerous friends struggle with eating disorders, and while I could sympathize with them, I never really understood how someone could just stop eating. But when I started getting sick, I quickly grew to learn all of the emotions and struggles associated with eating disorders. 

I was diagnosed with ulcerative colitis on December 10, 2018, but my symptoms began long before then. Beginning around September of 2017, I began having severe stomach pains and found myself sick after nearly everything I ate. I started to try to adjust what I was eating in an attempt to see what it was that was causing such extreme pains. I saw numerous doctors who told me I was just stressed or that I had IBS and just needed to learn better management of my stress and emotions. I went to my first GI, who ran multiple tests that all came back negative. We started restricting types of foods like gluten and dairy to see if they were causing my symptoms. 

Because of the pain I was in and the limited foods I could eat, I was dropping weight pretty rapidly. I started hearing how “good” and “thin” and “healthy” I looked. People asked if I had started working out or what diet I was on. I was at my sickest, but to everyone else, I apparently looked my best. While test after test continued to come back negative and I continued to feel sicker and sicker, my weight also continued to drop. I found a sense of control in being able to choose whether or not to eat each day. People’s comments about how “good” I looked started to get to my head. I began to restrict my eating far beyond what was medically necessary to control my symptoms. 

I soon found myself to be the weight that I was when I was 13 and in 7th grade. I was shopping in the children’s section of stores and buying XS and 00 sizes in women’s. People told me I must be incredibly fit and in shape because they could see my abs, but in reality I was just so thin, that there wasn’t anything else there.

I continued getting tested for different illnesses and diseases, and the results kept coming back negative. I was angry, I was in pain, and I needed to control something in my life when everything else seemed so uncontrollable. By April of 2018, I was sickly thin. I finally admitted to myself that I needed help. I sought out a therapist that specialized in eating disorders. I worked extensively with her throughout the course of the summer. When school started back up in the fall of 2018, I was back to my normal weight and mentally doing much better. I had found a good medication that helped with my anxiety and depression and felt much more like myself. 

While my mental health was in a much better place, my physical health was still struggling. Around November, it began to plummet and, what I know now to be my IBD symptoms, got much worse. In December, I called my GI explaining my worsening symptoms and we scheduled a colonoscopy for the next week. 

The next few months after my diagnosis, I continued to get sicker. I was very limited in what I could eat, but I continued working with my therapist and we made sure I wasn’t restricting myself beyond what I needed to do for my IBD. Fast forward to March of 2019 when I was in and out of the ER multiple times a month. I was put on Prednisone for what I was told was going to be “just a couple weeks”. The prescribing doctor warned me of possible weight gain, but said that since I would only be on it for a few weeks, the 5 pounds would fall right back off. 

He was wrong. 

I was on Prednisone from March until August of 2019. And in the first two months on the medication, I gained 47 pounds. As someone recovering from an eating disorder, this was indescribably difficult for me. I found myself needing to shop in stores I had never been in before. I was wearing sizes I had been able to practically swim in just a short year ago. I went from roughly a size 2 or 4 to a size 12 in just a couple months. I had stretch marks. I had cellulite. And I was much heavier than I had ever been in my entire life. 

Over the course of the summer, I struggled hard. I found myself wanting to restrict what I ate in an attempt to lose some of the weight I was gaining from the medication. But I remained strong. I reminded myself of how much I had overcome in the past year. I reminded myself that the weight gain due to the medication was far beyond anything I could control and that restricting what I was eating wouldn’t help. I reminded myself that I was still the same strong and resilient person whether I was a size 00 or a size 12. 

When I was finally able to get off of the Prednisone and my IBD was in remission, I decided to get a tattoo to be a constant reminder of my strength. In a time when I could have so easily gone back to old habits and had every reason to feel self-conscious, I remained strong and held to the mindset I had worked so hard to get. I got a tattoo of the National Eating Disorder Awareness logo on the back of my arm as a reminder to me of how much I went through and overcame in just one short year. 

Nine months later, I have still not lost all the weight that I gained on Prednisone. It is still hard for me to look back at pictures of my normal and healthy self and wish I could look like that again. I have a bin stored away of the larger clothing I had to buy while on Prednisone in case I have to go on it again. It’s easy to look back at my life before my diagnosis and before I started getting sick and wish to go back to that time of my life. But when I look at everything I have gone through since then and everything I have worked so hard to overcome, I can’t help but be proud of the progress I have made.

---

This article is sponsored by Gali Health.

Gali Health is an AI-based personal health assistant app helping people with inflammatory bowel diseases (IBD) proactively manage their condition. Gali gathers knowledge from daily interactions and health monitors to tailor support and information to your specific IBD experience.

Why Me? Why Advocacy?

By Rachael Whittemore

---

Reading the inspiring stories written by my co-fellows and having conversations about what it means to for each of us to be IBD advocates for young people prompted me to consider the different paths that led us to our roles in advocacy. Each of us have been through times of uncertainty, emotional and physical pain, bowel preps, needle sticks, treatments and more to hopefully get us to remission and the promise of life similar to what we had before we were diagnosed. We have different interests, different educational backgrounds, come from different cultures…maybe we’re even from different countries or different areas of the same country. I know my diagnosis story and IBD journey is different from theirs, and that’s ok, but above all else, we share a bond of navigating life as young people with chronic illness.

By this point, you might be wondering - why advocacy? Before I can answer that question, I have another admission: as much as I felt that I was strong and capable and felt like I took everything in stride, I was angry at the world and at my body when I received my diagnosis (I’m sure many of you can relate!). Even though I have an immediate family member with ulcerative colitis, it felt like everything I knew about the disease went out the window once my diagnosis became a permanent part of my medical record. I took care of myself, was always active, ate healthfully, and yet I still ended up with IBD. I felt like my body had broken up with me. Feelings of shame, exhaustion, and physical disconnection came to color those first few months of living with ulcerative colitis, as I realized I would have to figure out how to navigate something that seemed entirely outside of my control.

I won’t sugar coat things – it really did take a while for me to feel like I had a grasp on what my body was experiencing, and the various things I needed to process that, both emotionally and physically. But in time, with the support of family and close friends (and meds and diet changes), I allowed myself to process my diagnosis and my own lived experience, and as a result, I slowly found ways to get my symptoms under control. Still, one question lingered: what to do next? As much as I was frustrated, I thought about how it’s hard to talk about IBD, often viewed as a “bathroom disease,” with others.  It seemed like it would never be ok for me to openly discuss IBD and I found myself struggling to figure out how to approach the various aspects of my life that were inevitably impacted by it - from social situations to work requirements. At that time, I was working in a medical office to get experience before going to Physician Assistant (PA) school. To me, there was little clarity among the general public about what IBD was, and a lack of resources for those affected. I wanted to find some way to make a difference, even if only at a small level. This is how IBD and patient advocacy suddenly took on a whole new meaning for me.

“Take a deep breath. You can take that next step…”

I did some Google searching and got involved with the Carolina’s Crohn’s and Colitis Foundation (CCF) and got to know others with IBD. I worked on our local planning committee, attended our Take Steps walk to raise awareness and research funding and, while there, noticed how many young people were walking there as patients. My overlapping time working with CCF and learning how to manage my ulcerative colitis shaped my passion for patient advocacy and education. As a future medical provider (graduation coming up in December!), being a patient advocate was especially important to me since I’d spent extra time in my own patient shoes. This has continued as I became involved with CCYAN and as I started my final clinical rotations for PA school this year.

It may seem like my path to IBD advocacy was clearer cut since I’m in the medical field. While I believe my occupation certainly gives me additional perspective, it was really the weight and frustration I experienced as a patient diagnosed with ulcerative colitis that inspired me to take something negative and use it to positively impact others. For some of you, it might take some time to come to terms with your diagnosis or even recover from being diagnosed in the first place. You might have to recoup from surgery, get used to your infusion schedule, or use more courage than you ever anticipated to get past the ongoing medical visits and unpleasant exams we go through as part of our treatment process.

At the end of the day, even if you already feel ready and able to “do something,” give yourself time to reach a healthy place - physically and mentally. From there, think about your hobbies, passions, and the resources you wish you’d had when you were learning to navigate your own IBD journey. Who knows, you might just find your own path to advocacy. Keep in mind, the word “advocacy” itself might seem intimidating, but there’s no need to ascribe undue weight to it. There are so many things, both large and small, that can have an enormous impact on others. It doesn’t matter if it’s starting an IBD group at your school or a blog about your experience. Remember, the internet can be a beautiful thing and there are many ways to share your story and have it heard and supported by people who can both empathize with and learn from your experiences, even if they’re thousands of miles away.

Take a deep breath. You can take that next step – whether it’s learning how to share some of the uncomfortable parts of your story with your friends or beginning to forge your own path as an IBD advocate. Like many of our fellows have said before, this disease is part of you, but it doesn’t have to define you. Even something as small as sharing the #IBDvisible infographic during Crohn’s and Colitis Awareness Week in December can be a great first step to give others insight into your journey and create a space for dialogue where there was none before. I’ve only lived with ulcerative colitis for four years, but in that time I’ve made peace with my “body breakup,” and I’ve learned to be thankful for all of the amazing things I’m still able to do with this body as someone who is so much more than a diagnosis. And, as more time has passed, I’ve gone from the perspective of “why me?” to “why not? Why not make advocacy a part of my IBD journey?” I hope you’ll find that, in time, you can, too.

---

IBD Diets: Gluten Free for Crohn's and Colitis

By Leah Clark

Because of the popularity of Hollywood fad diets, the term 'gluten-free' has become more and more popular over the past decade. While not necessarily intending to do so, this trend actually brought great change to individuals suffering from celiac disease, non-celiac gluten sensitivity, and inflammatory bowel diseases. With new food products coming to market and more menu items coming to restaurants, it has provided a new way for people that cannot eat gluten to experience food. As someone that was diagnosed with both celiac disease and #Crohn's disease ten years ago, I can confidently say I know my way around a nutrition label. That being said, not everyone that is on a gluten free diet, or that is planning on starting one, knows what to do. When discussing your treatment plans for your IBD with your doctor, discussing diet changes should not be forgotten. So, is going gluten free right for you?

Bacon, eggs, potatoes...who says living a gluten free lifestyle means giving up your favorite breakfast foods!

What is gluten?

With all these terms of gluten free, gluten sensitive, wheat-free, gluten-friendly, and more, it can be confusing to know what it all means! Isn't flour gluten, or is it any grain? To start with the basics of a gluten free diet, one has to know what to look for. Gluten is the proteins found in wheat, rye, and barley. So when on a gluten free diet, wheat, rye, and barely are the foods to avoid.

How to read labels

Okay, so know that I know what to avoid, what are the necessary steps to ensure that I don't eat the wrong foods? Check labels on everything. Even if you think something may be gluten free, it never hurts to read the nutrition labels. Certain foods don't have labels, such as fruits and vegetables; however, these foods do not consist of any other ingredients other than what they are called-apples, carrots, oranges, etc. Foods that are made with other ingredients, such as cereal, pasta, and crackers, are foods that need to be checked. Luckily, most companies are good about food labeling, so boxes will often say "Gluten Free" or "Contains: milk, soy, and wheat."

However, sometimes there are tricky labels that you need to look out for. For example, the cereal Rice Krispies is not #glutenfree. The ingredients include rice, sugar, salt, malt flavor, and vitamins and minerals. The key word here is malt. Although the other ingredients are okay, the malt flavor is not. Malt is a tricky word because it is not wheat, rye, or barely; however, malt is a derivative from barley. Therefore, Rice Krispies are not gluten free. Words like malt extract, malt flavoring, barley malt, wheat-germ, and non-gluten free oats, are words to look out for.

What foods can I eat?

A good rule of thumb is to stick to foods that are labeled gluten free, or are"natural" foods. By natural, I mean foods that are not made with large amounts of ingredients. A good starting gluten free grocery

list could include:

• Fruit-apples, bananas, kiwi, oranges, grapes, strawberries, raspberries, blueberries, plums

• Vegetables-carrots, corn, green beans, lettuce, spinach, broccoli, radishes, celery, zucchini

• Milk-can be almond, dairy, soy, cashew

• Protein-lean meats, chicken, eggs

• Dairy products-cheese, gluten free yogurt, butter, cottage cheese

• Grains-white or brown rice, gluten free oatmeal, gluten free breads and pastas

Gluten free pizza? Yes please! Restaurants have gotten better at properly preparing gluten free dishes, including delicious pizza, to make it easier for people to enjoying going out to eat.

Gluten free diet can not only be good for your gut, but also for other parts of your body because of how healthy a gluten free diet can be. Many of the foods listed are healthy in their nature, like lean meats, fruits, and vegetables. However, just because something says "gluten free," does not mean it is part of a healthy diet. Sure, chocolate is gluten free, but if all you ate was chocolate, would that be the best way to go on a gluten free diet? Probably not.

But I thought gluten free foods always tasted bad?

A common misconception about gluten free food is that it tastes gross. While yes, there are some bad gluten free food products out there, this is no different than there being bad gluten food. It all depends on your preferences and experimenting with different brands. Making home-made gluten free brownies is not as simple as using a Pillsbury box recipe of 'normal' brownies (although, there are some Pillsbury gluten free baking products that taste great). The point is to try new brands and baking techniques that work for you. I've spent the last ten years of my life finding my favorite brands of pastas, crackers, and bread, and I can honestly tell you, it wasn't I traveled to an entirely different country and tried their gluten free bread that I found my favorite. Gluten free food can taste just as good, if not better, than the food you're used to! It just takes some time and preparation.

How do I know if gluten free is right for me?

Honestly, it all depends on what you and your doctor think is best for you. I had to go gluten free because I was diagnosed with a disease that literally required me to. Yet, I know several people with Crohn's or colitis that have gluten free diets that do not also have celiac disease. In short, if eating certain foods make you feel bad, do not eat those foods! There are other foods I avoid even though they are gluten free, such as popcorn and caffeinated sodas, because I know they upset me. It truly depends on each person and if it is going to help with your treatment for IBD.

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