5 Things I've Learned Living On My Own

By Laurel Dorr from Maine, USA

I have been away at college for the last couple of months, and although I am living semi-independently in a dorm, it’s the first time I have lived away from my parents.

Below, I talk about 5 reflections and lessons that have come up as I learn to live with inflammatory bowel disease (IBD) in a new environment.

1. What you need is not “too much.”

Fortunately, my college has provided several crucial housing accommodations for me. Yet I have found myself avoiding eye contact when people asked me about my roommate (I have a single room), or hesitating to mention the attached bathroom when someone asks about my room. I kept unconsciously feeling like these were awkward details, or even like I was “bragging” about my living situation.

But these accommodations, along with several others, have made my life so much more manageable. And if anyone has a problem with it, they have never said so to me. Don’t let fear or shame keep you from asking for what you need. I can’t imagine what my life would look like without these supports.

2.  It’s okay to be alone. 

I have often felt out of place here, for a number of reasons; not least because I am a transfer student, and slightly older than a typical undergraduate. There are also health concerns to consider: for instance, I can’t safely do things many of my peers do, like drink alcohol, go to crowded parties, or even stay out late. (No judgment against those who can!)

For one reason or another, I haven’t forged many deep connections or friendships yet, and frequently find myself studying or eating at the dining hall alone. But, I don’t see it as time wasted.

Instead, I have used this time to get used to being alone, and focusing on self-care. My body is experiencing just as much upheaval in this new environment as my social life is, and taking the time to acclimate and get comfortable with it has been beneficial to my health. I will find the right people eventually—but for now, my attention is where it needs to be.

3. However… part of self care is doing what’s best for you.

Even when it’s uncomfortable. When I talk about being alone, I don’t mean to say that I haven’t tried new things or put myself out there. I know that it is easy for me to self-isolate. Sometimes, it was even necessary, when I was sicker than I am now. But that isn’t always best for me. So while I cherish my alone time, I also try to step out of my social comfort zone.

For example, I usually set aside time for at least 1-2 campus activities (clubs, events) per week. In general, I also avoid eating or studying in my dorm room as much as possible—even if that just means reading in my floor’s common/lounge room, some days. Baby steps!

4. Doing the hard things is just as important as resting. 

I know I need time to rest and recharge, but it has taken me awhile to get on a good schedule and routine. College classes are hard enough, but living semi-independently makes it even more challenging. For instance, taking time each week to do things like laundry and cleaning, walking some distance to dining halls and classes across campus, attending office hours and extracurriculars—all of it builds up, and usually takes more time than I anticipate.

What has helped me is cliché, but true: setting up a schedule, and sticking to it. If I put off a difficult homework assignment until the last minute, it ends up taking away from my relaxing time in the evening, which makes the next day that much more exhausting, and I start putting off even more work. It’s a difficult cycle to break, but the way I feel and function when I manage my time well makes it worthwhile.

5. Make your space somewhere you want to spend time. 

I have also found it helpful to make my space feel refreshing and comfortable. Although I try not to spend too much time in my room, that’s not always possible. Some days, my IBD symptoms make it harder to leave.

Rather than let my environment add to that stress, though, I make sure to keep my curtains open and my space tidy; I have decorated with nature-inspired themes, like potted plants, artificial vines, and floral bedding; and I made sure to fill the room with cozy items, like a soft area rug and plenty of pillows.

These are just a few examples of how I manage my IBD within college life and living (more or less) on my own. However, it is an ongoing learning process for me. What have you learned about living on your own with IBD?

Featured photo by Ja Kubislav from Pexels.

Bittersweet Road to Recovery

By Maalvika Bhuvansunder

Recovery is a word that can be seen as both, something positive and negative. On one hand, recovery signifies better times, better life ahead, and no more pain. However, it also reminds us of what we had to lose in the process, the reality that we had something we needed to recover from, and a lot of other things. Recovery is even scarier when we do not know if it would last long or if it is just the calm before the storm.

My already low self-esteem took an even more downward spiral.

During our journey of recovery, we might not be our best selves. There is a lot we might have given up and the loss feels more real when we are healthier. Post my surgery and remission I started comparing my journey with others and started realizing all the ways I have been lacking behind. My career was on hold for the two years that I was in a horrible flare, my master's grades were not as great due to my flares, and my social life was practically non-existent. My already low self-esteem took an even more downward spiral, which was surprising, as I had expected being in remission would help improve my self-esteem. What did not help were comments of people saying finally I would stop crying all the time or that at least now I can start having a career. I started comparing myself to those my age and started resenting myself for not being where they were. In this process, I was becoming a bitter person who was unhappy with others' success and was wallowing in self-pity.

A year ago I could not get out of bed or eat a single morsel of food. Now, I am healthier, able to eat what I love, and do things I have wanted to do.

What I forgot to realize was that being in remission is my growth! A year ago I could not get out of bed or eat a single morsel of food. Now, I am healthier, able to eat what I love, and do things I have wanted to do. This is a huge accomplishment for anyone with a chronic illness! I did some self-reflection and realized I was being too harsh on myself. I am a part of a fellowship that helps others like me and I realized how big of an accomplishment this is! There is no fixed definition of growth and success.  Instead of feeling bitter over others' success, I started being a part of their happiness. They were there for me when I was at my lowest, so it is my turn to be there for them. I started celebrating the small successes in my life and it made me feel proud of myself. One of the steps to recovering was accepting the fact that it is okay if I am not on the same path as others, as my journey is my own and is unique. Our bodies have been through a lot, so the fact that we can function with all the pain is a huge accomplishment. Our society is always going to have this “fixed” measurement of success. However, setting my definition of growth and success made me feel free and liberated.

“Each person has their journey and there is no fixed timeline for achieving goals in life.”

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Thoughts On Being “Strong” with IBD

By Carina Diaz

This year was my ten year anniversary of being diagnosed with Crohn’s disease, and I’ve often thought back to that time period in my life – and how much I’ve been through since then. I was 18 and a senior in high school freaking out about entering college with a disease I’ve never heard of. I used to think that doctors could fix anything. I saw health as linear. You go to a doctor when you feel bad, they give you medication, and then you go home. Simple as that … except not really.

The process of getting my diagnosis was actually pretty linear compared to other stories I’ve heard. I was needing to go the bathroom a lot more frequently and would be late to class from time to time after lunch period. My mom also noticed a pattern at home, so we went to my primary care doctor. She gave me a referral to see a gastroenterologist and from there I had my first colonoscopy experience. The only thing that made it not so bad was going to my favorite restaurant after, which has since become a tradition. 

I don’t remember the exact words that the gastroenterologist told me when he discussed the results, but I do remember how I felt in that moment. Very lost, extremely confused, and unsure of what having Crohn’s disease would mean for me. I immediately felt like an “other.” Different from my friends. I’ve never heard of this illness, I didn’t even know chronic illnesses existed, and I didn’t know anyone else who had a similar story. I felt alone.

Through these past ten years, so much has changed. I have changed and learned a lot. There has been so much information on IBD that my doctors didn’t tell me about that I had to learn on my own or from the internet. I have gained a lot more knowledge and understanding by hearing other people’s stories. Looking back, it makes me want to give 18 year old me a hug for all the suffering that could’ve been avoided. 

Having a chronic illness pushes you in so many ways. I didn’t know not all doctors have your best interest in mind. I had to learn not only how to listen to my body, but how to advocate for myself – and that is a process that will never end. I’ve learned to identify my boundaries, prioritize who I allow into my life, how to cope with stress, and that no matter how much I try to take care of myself, I still might not feel well. And that isn’t my fault. 

People who are chronically ill often get praised for being strong – and I wish able-bodied people would understand that we don’t have much of a choice. There are things I constantly need to do and be aware of to minimize the chances of a flare. But sometimes even my best efforts won’t prevent that. Crohn’s takes up a big space in my brain and there is not a day that passes that I’m not thinking about my symptoms.

Should You Be Open About Your IBD With Others?

By Isabela Hernandez (Florida, USA)

I’ve often wondered the effects of how open I’ve been about my disease, through these articles, on the mental coping of my disease. It has gotten me to look back on my journey and the strides I’ve taken when sharing the mental and physical fatigue I deal with. I used to be very closed off when it came to all things IBD. I would tell the people around me that I have “stomach issues,” and that’s it. As I entered into my advocacy journey, I started letting the people around me in; giving them the information I withheld for so long about a part of myself I repressed from the outside world. I truly believe that through this, I have been able to mentally process my disease better. So, this is where I wonder: does being more open with your disease mean better outcomes? Or alternatively, does being private about your disease mean you are able to maintain sanctity within the crazy experience that is having a chronic disease?

It can become exhausting trying to share an experience with someone that will never truly understand what it is like to be in your shoes.

As I spoke with another 2022 fellow, Carina Diaz, about this, and she expressed, “It’s exhausting to continuously have to educate people closer to me on IBD, especially family. I’ll either point them to resources so they can do their own research [like content made by fellows] or tell them that I’m not talking about my health at the moment,” which is something I feel and relate to daily. Even though I am open to those around me about my IBD, they still sometimes look at me with eyes of confusion, never fully grasping what I tell them. It can become exhausting trying to share an experience with someone that will never truly understand what it is like to be in your shoes. So, this somehow supports the argument that being private about certain parts of your IBD can actually save you from the exhaustion that comes from having to share very personal parts about yourself.

I encourage every IBD patient to find a community of patients your age to talk to.

However, Carina also mentioned, “It’s comforting to know I’m not the only young person who sees their doctors more than their friends.” I have come to the conclusion that there are two ways that I find best when being open about your disease. I believe being completely transparent, and not holding back, with other individuals who suffer with IBD through peer support absolutely shifts the way you will view your disease, while being open but maintaining healthy boundaries with friends and family will help them grow in their understanding of your disease while allowing you to maintain autonomy within your space as a patient. Having peer support through the IBD community is one of the best things that has ever happened to me and something I am eternally grateful that I found. I encourage every IBD patient to find a community of patients your age to talk to, hang out with, or even just meet virtually and challenge yourself to share parts of your journey you have been too embarrassed or scared to share. I used to think that certain parts of my life were too much or too humiliating to share to others and that they were these huge parts of my life that could never be lived down. However, I’ve found that once you share them, you realize they’re actually not that big, and they become just small, formative parts of the journey as a person. It is even more comforting to share them with people who you know, in some way, will understand.

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This article is sponsored by Trellus

Trellus envisions a world where every person with a chronic condition has hope and thrives. Their mission is to elevate the quality and delivery of expert-driven personalized care for people with chronic conditions by fostering resilience, cultivating learning, and connecting all partners in care.

Saying No is Ok!

 By Isabela Hernandez (Florida, USA)

There are going to be days when your IBD is acting up, and you do not feel up to going to events or seeing friends you’ve committed to seeing. Yet, you feel guilty for saying you don’t feel well. I used to struggle with this heavily. I would have a plan with friends that was made in advance, but the morning of, I’d wake up feeling extremely sick. Many thoughts would be going through my head. Do I go and stay in pain? Do I say I’m sick; would they believe me if I say I’m sick? Why do I feel guilty for changing my mind? I would try to explain to the people around me how I was feeling, but I could see in their faces they didn’t really understand how intensely my IBD affects me, especially socially. To them, me saying no was me bailing on spending quality time with friends for selfish reasons. For me, saying no was the only way I could preserve the sanctity of my physical and mental health. These experiences with friends have taught me many things.

There is NO reason we need to feel guilty for prioritizing our health, whether that be saying no to a friend or backing out of a plan last minute due to symptoms.

If your friends don’t try to understand how your IBD affects your life socially, then it may be time to reevaluate what these friendships mean to you.

Find healthy ways to communicate with the people you are close with to let them better understand your IBD - if you don’t let them in, they’ll never truly get to know you and your disease.

Be open with YOURSELF about what you feel and adjust your day based on that. Everyday is different and that’s ok.

Do what’s best for you!

Now, those around me know when I say, “I’m having some symptoms today, I don’t think I can go,” that it is not personal, but I need to focus on myself that day. I’ve found people who have learned to respect that and really understand what I feel. I challenge you to put yourself first and learn to prioritize your health, even when it’s hard.

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This article is sponsored by Trellus

Trellus envisions a world where every person with a chronic condition has hope and thrives. Their mission is to elevate the quality and delivery of expert-driven personalized care for people with chronic conditions by fostering resilience, cultivating learning, and connecting all partners in care.

What I Wish I Knew Before Having an Ileostomy

By Carina Diaz (Texas, USA)

It’s been a year and four months since my ileostomy surgery, and I’ve been in a reflective mood about it. This was my first and so far only surgery I’ve had for my Crohn’s Disease. I had first learned about ileostomies and ostomy bags on Instagram and then later on YouTube when Hannah Witton shared videos about her surgery. To be honest, it sounded like the worst case scenario. Little did I know that years later, it was a decision I would have to make.

There was so much I didn’t know about this surgery and what living with an ostomy is really like. I didn’t know that it was reversible (in some cases) and that it’s not considered an invasive surgery. While in the hospital, I accepted a job and ended up moving to a new city a month later The first month post surgery was very hard, and I had not been well prepared by the hospital staff before being discharged. Here is what I learned post-surgery and advice I wish someone had told me:

• Get the name and number of an ostomy nurse before you leave the hospital. This is so so important. I did have a home nurse come for a few days to help me get familiar with changing my bag, but after that I was basically on my own. I ended up having a lot of blow outs and skin issues and didn’t know of anyone to contact. Make sure to ask your hospital nurse or health insurance for a recommendation.

• You don’t get to choose how long you can wear a bag for, your body does. One of the hospital nurses told me that some of her patients could change their bags up to once a week and I thought to myself, “That’s perfect, I don’t need to change it too often.” But this wasn’t the case for me. I have eczema, and the skin where the bag goes was not happy about it. It took me almost a full year to nail down a changing routine that worked for me and it ended up being every other day. Everyone is different and there are so many factors when it comes to how long to keep your bag on for. The only way to know is through trial and error. 

• There are different kinds of ostomy bags for different types of stomas. The bags that hospitals supply you with are the cheapest of the cheap. Mine were clear and seeing not only my output but also my intestine was disturbing. Thankfully there are more options out there than just cheap ones with no air filter to let out the gas that can cause a stoma bag to balloon. There are also all kinds of products to help your skin and keep the bag in place. 

• Your weight could fluctuate…a lot. I was underweight before my surgery and had been for several years. Post surgery, I got back to my normal weight and then some. This has been one of the hardest things about an ileostomy for me. I was finally absorbing what I was eating instead of it immediately going through me. Body image is something that I’ve really struggled with since being diagnosed with Crohn’s, and gaining more weight than I’m used to honestly hasn’t helped that. 

Something that I keep reminding myself of when I got through hard things is that what I need is time. Eventually I will get through it and another difficult time will come, but by then I will be better able to handle it. Living with IBD is hard, and it’s best to be kind to yourself through it. 

Opening Up About Your Chronic Ilness

By Varada Srivastava from India

Since I was diagnosed with Crohn's disease, I've had trouble deciding who to tell and how to approach the subject of my chronic condition. It is difficult to casually bring up this topic in conversation. Usually, when you tell someone you have an incurable illness, the conversation becomes difficult for everyone. However, there are occasions when it can be cathartic and just what you need to strengthen your connection. This is what I've learned about Crohn's disease after having numerous awkward and amazing conversations about it.

It might be difficult to talk about your illness depending on where you are in your IBD journey or how open you are as a person. I found it quite difficult to discuss my diagnosis of Crohn's disease in the early years since I was still coming to terms with it. Seven years later, I feel more at ease discussing it.

The choice of whom to tell is even another challenge. When I was diagnosed, I was still in school, and I had no control over who knew about it. The majority of my students and teachers were aware because they watched me going through the diagnosing process. However, nobody was aware of it when I arrived at the university. I felt in charge of the coversation as a result, but I was also afraid about how other people might respond. Would they treat such a significant aspect of my life seriously? - was something I frequently wondered to myself.

I've had great luck to be surrounded by people who have supported me greatly while I've been a student. But negative experiences with this are inescapable. There will be people who downplay your difficulty or don't react with the greatest degree of empathy. We frequently believe that our condition is too complex to explain in professional situations or that it is private and should not be mentioned in the workplace. However, there are situations when you must inform others for logistical reasons, such as your manager, HR, or lecturers. They must be aware in order to offer you a little more flexibility at work. It might not be necessary to go into great depth about inflammatory bowel disease (IBD) at this point, but letting them know that you might need a few extra sick days or extensions and explaining the need for them may be beneficial in the long term.

Keep in mind that people might ask follow-up questions and it's completely acceptable if you don't want to elaborate. You decide how much information you want to share with them. Nevertheless, I discovered that when you have an incurable condition, being honest about it is a crucial and necessary process (even if you do it occasionally with the wrong people). The majority of people are kind and will react positively. But if not, remember that the conversation about your chronic illness doesn’t have to be seamless each and every time you have it. You can view it as a learning opportunity and overtime you’ll learn what details you feel comfortable disclosing, and with whom.

Featured photo by Koma Tang from Pexels.

How I Prepared for My Surgery

By Maalvika Bhuvansundar

Hearing the word surgery is enough to give a lot of us nightmares. During my early stages of diagnosis, I was told of a future where surgery might be required, but I never thought such a day would come. Well, looking back at it now, I realize how wrong I was for assuming this. For a lot of us with IBD, surgery might be inevitable. However, there are also a lot of individuals with IBD who might not require surgery and could reach remission with medication and lifestyle changes. It wasn’t the case for me though. After six painful years of being sick, surgery seemed like the most probable solution. Got numerous tests done once again for the 100th time and realized that my intestines were narrowed. The good news was that Remicade was working well for me, and the narrowing was getting better but at a very slow pace! I was given two options, either I could get hemicolectomy surgery done or could rely solely on Remicade which might take longer to ease my symptoms. The following steps helped me make a clear decision:

Make a pros and cons list - having things written out helps make a more objective and rational decision.

• Get all the required tests done and always ASK for a copy of your reports.

• Always get a second opinion! It’s our body and we have every right to get as many second opinions as we’d like. Don’t let anyone tell you otherwise.

• Make a pros and cons list - having things written out helps make a more objective and rational decision.

• Ask your doctor every doubt you have regarding the surgery even if it may seem repetitive or irrelevant. It is better to make a decision with all your doubts and concerns answered.

Luckily for me, my aunt and uncle are both doctors, and they assured me that getting this surgery would be the best decision I took, and they were spot on! There are a few things to keep in mind for post-surgery:

Ensure they have given you the medications required to take at home.

• Always write down the instructions given for home care.

• Ensure they have given you the medications required to take at home.

• Do not leave without the discharge summary!

• There are chances of having constipation post-surgery; it is a pretty common side effect. Ask the doctors what to do if this situation pertains to avoid anxiety and stress regarding this once you are back at home.

• Do not miss your follow-up appointments!

Thanks to this life-changing surgery, for the first time in six years, I am symptom-free, and though I will always have the scar to remind me of the pain, it also reminds me of the decision that helped me lead a better life. This experience showed me that life could take a different turn unexpectedly. However, the scary choices may sometimes be the best ones we’ve ever taken!

Why You Need a Restroom Access Card

By Carina Diaz (Texas, USA)

There is a law in 13 states called Ally’s Law, which requires retail establishments to allow people with IBD and other similar conditions to access an employee restroom if there aren’t any public facilities available. It got its name from Ally Bain, who has IBD. When she was 14, she was shopping with her mom at a store when she experienced a flare and felt the sudden urge to go to the toilet. 

Since there wasn’t a public restroom, she asked to use the employee restroom. She was denied access by a manager and had an accident in the store. Ally and her mom met with an Illinois state representative, and they drafted a bill allowing people to use an employee restroom if they have a medical condition. It became a law in 2005. 

I’ve had a card for a few years now and it has really saved me in times of need when my symptoms were very intense. Just knowing that it’s in my wallet has given me peace of mind. Though it hasn’t always been well received. Here is a list of some of the places I’ve used it and my experience:

• A concert venue: At this particular venue, they close off the main restrooms after a certain time. A friend came with me to look for a bathroom, and it ended up being quite the journey. We found porta potties, but I wasn’t comfortable going in one and really wanted more privacy. I talked to a security guard and he told me to go to the VIP section and explain that I have an illness. I was denied at the entrance and the employee didn’t even let me show the card or anything. Then, I walked back to where the main bathrooms were, which were close to the stage, and had to yell at another security guard for him to hear me. I held up my card, and he kept asking if I had a medical bracelet. After a few minutes of back and forth between him, my friend, and I, he called over his supervisor who kindly let me use the bathrooms. This was a stressful situation, and although it’s a popular spot for live music in the city I live in, I refuse to ever go again. 

• The post office: I was with my mom running errands when I felt the urge to use the bathroom. I took out my card, and my mom explained my situation to a worker who then walked me to a bathroom. I remember feeling pretty sick that day, so I was very grateful.

• American Eagle in a mall: This was my most positive experience using the card. I held it up and told one of the employees that I really needed to use the restroom. I don’t think she even read it, but without hesitation, she led me to the back where the employee restroom was. She was very kind about it and didn’t make me feel weird or asked questions. 

I learned about this law and the restroom access card through a Facebook group, but this is one of those things that would’ve been helpful to know of when I was diagnosed. It’s an important resource to have and has helped me be an advocate for myself. The Restroom Access Act has also made the outside world a bit more accessible for people with IBD. If only it were a law in every state and all over the world!

You can learn more about Ally’s Law and the Restroom Access Act on the Crohn’s and Colitis Foundation’s website and at the American Restroom Association’s website for the bills in 13 states. To get your own card (which also has a mobile option), you can go to crohnsandcolitis.com (this is where I got mine) or girlswithgurts.com.

Traveling With an Ostomy Bag

By Carina Diaz (Texas, U.S.A.)

As the world is opening up a little bit more, I was able to travel a couple times in 2021. Having an ostomy made it an entirely different experience. If you also have an ostomy and haven’t traveled with it yet, here is my experience and some tips. 

Almost every time I’ve been through TSA since my ileostomy surgery, I’ve had to be patted down by someone. I asked an agent if there was some kind of medical pass or something so that I wouldn’t have to keep going through this, and she told me my only option was to get TSA pre-check. Getting patted down doesn’t take too much time, but it’s definitely something to keep in mind while traveling as it can add time at the airport. I wish there was a more accessible option since TSA pre-check costs money. 

Hiking El Yunque rainforest in Puerto Rico and a mirror selfie after emptying my bag at a restaurant.

As a kid, I was definitely a window seat type of person, but now as an adult with a medical condition, I much prefer the aisle. This way I don’t have to ask anyone to get up if I have to go to the bathroom during a flight, and it eases my anxiety. If I bring a carry-on suitcase, I can also easily access it in the overhead bin if I need anything. 

I change my ostomy bag every two to three days, so I make sure to pack my supplies accordingly. I also bring at least two extra ostomy bags in case of leaks or if I accidentally cut a hole through my bag. You can get travel size products from whichever company you order your ostomy supplies through. Adhesive remover spray and lubricating deodorant are two of my essentials. The adhesive spray helps to take off the bag easily and gently from the skin. The lubricating deodorant is a liquid you put in your bag so that output doesn’t cause a blockage or pancake at the top. 

Traveling with friends to NYC for a concert.

I usually always bring a small bag or backpack with me on the plane. This is where I’ll keep a small pouch of my ostomy supplies to use in case I have a leak while traveling. So far, it has only happened a couple times, but I was very glad to be prepared.

The supplies I bring are:

• Scissors to cut the hole for my bag

• My Hollister two piece bag system

• A trash bag to put the old bag in

• Adhesive remover spray

• Skin prep

• Cream for my eczema that I have on the skin near the bag

• Stoma powder

• Barrier strips

• Tape

• A small mirror. If I can’t access a family bathroom, the mirror comes in handy when changing in a bathroom stall. 

Besides keeping a pouch with supplies with you on hand, you can also talk to a flight attendant about having an ostomy and feeling anxious about flying with one. I have anxiety and letting someone know how I’m feeling helps me to calm down. This way if I end up needing help, they’ll know of my situation. I usually have snacks with me as well, but I also ask for an extra bag of pretzels since that can help output come out more formed and less liquidy. 

Being prepared is something that really eases my mind. After traveling the first time with an ostomy, you’ll have a better idea of what to expect. I hope that reading about my experience and how I prepare can bring peace of mind to anyone out there who is feeling unsure about traveling with an ostomy.