Art Therapy Interventions for IBD

Art Therapy Interventions for IBD

By Divya Mehrish from New York, USA

As a result of the unpredictability of their debilitating symptoms, inflammatory bowel disease (IBD) patients often struggle with severe loneliness and isolation. Therapeutic interventions focused on community-building can create safe spaces for patients, who can develop meaningful connections with others battling similar issues. Support groups can help patients maintain a “healthy emotional balance.” (1) While some groups are dedicated to discussing difficult experiences in explicit ways, group drama therapy and online expressive arts therapy (EAT) can “better…serve” patients who want to experience shared empathy without having to focus on the negativity of their diseases. (2) The collaborative nature of joint performance therapy provides a low-stress and “playful form of support” in which patients can lean on each other as they step outside of themselves, temporarily embodying characters and identifying a new sense of self beyond their disease identity. (3) Moreover, drama therapy deliberately integrates psychotherapeutic approaches. (4) However, community drama therapy relies on continuity and the establishment of a consistent group of role-players in order to maintain a trusting space in which participants feel comfortable taking these risks.

Conversely, EAT can be integrated into scalable virtual therapy platforms that are accessible to many individuals at once. (5) Actively-flaring patients who cannot travel to clinics for in-person sessions can still commit to online EAT. Ultimately, it is consistency that is most critical to a patient’s ability to maintain remission—not whether the therapy takes place in-person or online. While there has been significantly more research conducted on music and visual arts interventions for patients with chronic diseases, in-person drama therapy and online EAT offer patients the unique opportunity to liberate themselves from the constraints of their illness identities and take part in an immersive role-playing experience that integrates mind and body.

Featured photo by Shiva Smyth from Pexels

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References

“Depression and Anxiety,” Crohn's & Colitis Foundation, accessed February 5, 2023, https://www.crohnscolitisfoundation.org/mental-health/depression-anxiety.

 Lora Williams, “Integrating Expressive Arts Therapies into Facilitated Online Therapy Groups for Adults: A Review of the Literature,” DigitalCommons@Lesley (Lesley University, May 2022), https://digitalcommons.lesley.edu/expressive_theses/401/.

 Molly Weinberg, “Using Community Dr Using Community Drama Therapy To Support Adults with Crohn's Disease and Ulcerative Colitis,” DigitalCommons@Lesley (Lesley University, March 2020), https://digitalcommons.lesley.edu/expressive_theses/356/.

 Ibid, 9.

 Lora Williams, “Integrating Expressive Arts Therapies into Facilitated Online Therapy Groups for Adults: A Review of the Literature.”

Another summer to remember as an IBD camp nurse

Another summer to remember as an IBD camp nurse

By Linda Yoo from Washington, USA

In the summer of 2023, I returned as an IBD camp nurse.

IBD camp is one of my favorite events of the year. My experience at camp the year before really changed my perspective on the importance of my work in IBD research and the need for safe places for people with IBD to be themselves. At camp, we do not need to explain much; we all “just get it.” There is nothing weird about taking medications, needing a break, going to the bathroom, and listening to your body at camp. The beauty of camp is really our connection with IBD, whether it is personal or professional, and our empathy for one another. 

This year was particularly special because it was after the pandemic. We had Mike McCready from Pearl Jam, come share his story about IBD and answer questions from campers. He even stayed to gift and sign records, and take photos with the campers. It was special for young campers to see someone who is famous have IBD.

Also, this year, the campers could interact with one another more. Although we were cautious, the fears of Covid-19 were no longer looming over us. We had a larger healthcare team that consisted of a range of professionals, such as dietitians, nurses, physicians, and mental health counselors. Everyone played a key role in the health of our campers; I found it interesting to learn about the different ways our skill sets could be used to tackle health problems.

Throughout my time at camp, I was reminded of the importance of creating a multidisciplinary healthcare team to treat and manage IBD. Every person with IBD deserves a team that can help address multiple aspects of health and life! I learn something new every year at camp, and I once again leave IBD camp with beautiful memories!

Featured photo by mododeolhar from Pexels.

5 Things I've Learned Living On My Own

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.

Not only a doctor, but a dear friend too: An IBD patient's perspective

Not only a doctor, but a dear friend too

By Mahder Ayalew from Ethiopia

Medical care is a fundamental human need and patients should feel comfortable when seeking medical attention from doctors. However, this is often not the case as most patients find it challenging to open up about their health issues. In this article, as I promised in my very first article (Can I be happy after a Crohn’s diagnosis? I say, yes you can), I will narrate my experience with my doctor who assisted me in tackling a health problem related to Crohn's disease and helped me to improve my lifestyle. I will emphasize the importance of the doctor-patient relationship in ensuring successful treatment outcomes and acknowledge the effort made by doctors in treating us as friends rather than just names on a paper.

For a long time, I had been afraid of consulting doctors. Being in their presence triggered extreme fear, making it difficult to communicate my health problems effectively. This fear resulted in me frequently avoiding medical attention until the situation necessitated immediate attention.

However, all this changed when I met my current doctor. He is a compassionate and understanding person who put me at ease and made me feel comfortable around him. He always took the time to listen to me without judging, and this made me feel that I could trust him with my health concerns.

My doctor focused on building a good rapport with me, which made our interactions not intimidating. He understood that patients come first, and he always took his time to explain the reasons for different tests, medications, and the importance of complying with the treatment regimens. He ensured that I understood the processes and reasons for each step of my treatment.

My doctor realized that fear was a significant obstacle to my healing, and he went above and beyond to ensure that I felt at ease during my consultations. He encouraged me to speak up about my worries and any issues that I may have faced during the treatment process.

My doctor's dedication and compassion were instrumental in helping me to overcome my fear related to doctors. I have become more confident in seeking medical attention, and I have started taking responsibility for my health.

The relationship between patients and doctors is an essential aspect of successful medical treatment. Patients must feel comfortable trusting their doctors with their health, and doctors should nurture this trust by treating their patients with compassion and empathy. My experience with my doctor was transformative, and I would like to thank all doctors out there who treat us with respect and care for our well-being. The doctor-patient relationship can make all the difference to a patient's healing journey, and it is a vital component of the medical profession.

Photo by Savvas Stavrinos from Pexels.

This is the body I have today.

By: Laurel Dorr

cw: Body Image

When I was diagnosed with Crohn’s, I wasn’t prepared for all the ways it would change my relationship to my body. In particular, I didn’t know how it would affect my body image. When I was at my sickest, I dropped to my lowest weight since I was a teenager. As soon as I was diagnosed and started my first course of steroids, I lost about thirty pounds in as many days. I was getting sicker when I should have gotten better. Everyone seemed surprised that I was losing weight on prednisone. My weight stayed down for several months. I complained about it being a constant reminder of how unwell I was or how strange this new body felt. But beneath that, I was also relieved.

I didn’t have a very body-positive perspective to begin with, and I had struggled with my weight for years. Finally, the number on the scale had started to budge. Once I started to stabilize on my second biologic, I took my renewed appetite as a positive sign that my condition was improving… until my weight started to creep back up. And up. And up. Of course, I knew that I needed to eat more than a couple pieces of toast a day to get well. After more than a dozen iron infusions, I knew that I needed more nutrients to keep my anemia at bay. I knew this fuel was even clearing away my brain fog. However, I was also acutely aware of how differently my clothes fit. How the large-frame glasses I’d bought a year before looked goofily small on my steroid-swollen face. I made adjustments, with increasing frequency, to Zoom camera angles and selfies, trying to look more like my old self, and I avoided looking at pictures of myself on social media.

After being on prednisone for almost a year straight, I gained more than double the weight I’d lost at the beginning. Prednisone made me feel terrible in a lot of ways, but the way it altered my body image was the worst. Finally, I was put on a medication that allowed me to wean off—and for awhile, stay off—steroids. All of the not-myself-ness I’d been feeling melted away, almost immediately. My appetite became more manageable, and I had the energy to treat my body in healthier ways—better sleep, more movement. It didn’t happen overnight, but my body slowly began to feel more like it used to.

That doesn’t mean things are back to “normal,” whatever that means. Even if my weight continues to go down, my body simply isn’t the same. I described the extremes of my weight changes, but the reality is that it still fluctuates back and forth, as medication doses and other factors shift over time. I’m coming off yet another prednisone course now, and it might not be the last time I need it. Even if it is, weight fluctuations aren’t unusual, especially with Crohn’s disease—at least for now, these changes are relatively normal for me.

After all those months struggling with my body image, I’ve become more accepting of these changes, the inevitability of them. Some of it is out of my control, some of it isn’t; but none of it is a punishment. More importantly, I just don’t think about my body image as much anymore. This is the body I have today. Some days, it’s that simple. There are things I like about it, and things I don’t. Some days, those things change, or are more noticeable. But I’ve learned to look at it with less judgment. I buy new clothes when I need to, instead of squeezing into pieces I’m not comfortable in. I don’t avoid taking pictures with my friends, and I don’t cringe when I see unflattering angles of myself. Some days, I’m better at taking care of my body than others; but I also recognize that my weight is not a direct reflection of how “healthy” or “fit” I am at any given time. I’m allowed to live in this body, whatever it looks like. I deserve to enjoy this body. Right now, that’s enough.

Making the Most of Your Internship: How to Navigate Travel with Inflammatory Bowel Disease

Making the Most of Your Internship: How to Navigate Travel with Inflammatory Bowel Disease

By Karen Mancera

Imagine this: you've just landed in a new city, ready to start your dream internship. For many college students, traveling for an internship is an exciting opportunity to gain new skills, network with professionals, and explore a new city. But for those with inflammatory bowel disease (IBD), the thought of traveling to an unfamiliar place can be daunting and also presents unique challenges.

Thankfully, with the right preparation and planning, it's possible to manage your symptoms and make the most of your experience.

Planning ahead and preparing for the trip can begin as soon as you decide to begin applying for internships. I remember when I was contemplating whether or not to accept a research internship after my diagnosis. I felt overwhelmed and afraid about the uncertainty on how I would manage my health while I was away. Because I had just been diagnosed a few months prior, I didn’t have an established treatment yet which made me even more nervous about the process. Like in most Hispanic families, my parents were also hesitant about me going across the country for several months by myself. I still remember my mom’s main concern, ‘¿Y si te pasa algo y estamos aquí tan lejos?’ (What if something happens to you and we are here so far away). 

After overcoming the initial fears and concerns about managing your health while away for an internship, it's important to take practical steps to ensure that your health needs are still being met.

Connect with your healthcare team.

I discussed my plans to travel with my gastroenterologist and he gave me useful information to move forward. He assured me that I could still pick up my prescriptions in a different state as long as I informed them which pharmacy was closest to me. I chose to use the same pharmacy company I was using at home so my information was already in their system and picking up my prescriptions was quick. I was also able to schedule a virtual appointment with him while I was away. Keep in mind the time zone you will be in when requesting an appointment, or you might accidentally schedule one at 6 am like me. 

Communicate and advocate for yourself while navigating your internship.

You could share your diagnosis or simply some of your challenges that pertain to your role with your supervisor if you feel comfortable. Otherwise, you can discuss these details with the human resources office or research program coordinator. This can ensure that you receive the accommodations that you need. For example, for me this meant that the research coordinator prioritized finding 4-bedroom apartments with two bathrooms instead of one. She also took care of dietary needs for program-sponsored meals. 

Maintain your self-care during your time away.

There were times when other students in my program planned to explore the city and I opted to stay back because I was not feeling well. I also tried to prioritize my diet by cooking my meals most of the time. Cooking can be tricky because you will need to get cookware if you don’t bring it with you. My roommates and I decided to purchase some of the basics and shared them. Shopping for groceries can also be challenging if you don’t have transportation, but look for alternatives in the area like store deliveries, public transportation, ridesharing options, and local stores. Another priority for me was exercise. Since my research internship was affiliated with a university, I had access to their recreational facilities, but you could find local gyms or safe areas to go for a walk.

Stay positive.

Remember that having IBD doesn't have to hold you back from achieving your career goals. With the right planning and preparation, you can successfully complete your internship and gain valuable experience for your future career.

Libidinal Energy of an Emotional Eater with Colitis

Libidinal Energy of an Emotional Eater with Colitis

Photo: Olga Kuraeva

By Tanisha Singh

In psychoanalysis, an area of great interest for me, the term ‘libido’ is used to describe the vital impulse/force or energy that directs all our action in a way. It is commonly misunderstood to refer to only a sexual instinct whereas it extends to basially every possible instinct we have, whether it is sleeping, waking up, eating food, working out, talking, working or not working, you name it. The reason we are able to function or operate and engage with our world at all is because there is a libidinal investment in things that propels us. To put it simply, desire for things helps us seek those, wakes us up in the morning, and gives meaning and purpose to our existence, and I would argue also a sense of direction in an otherwise whirlwind of impulses - both internal and external. 

Growing up in a dysfunctional home turned me into an emotional eater. I would seek a lot of comfort in my chai and biscuit every evening. It soothed my nerves, eased my anxiety of being in a highly conflictual home. The sugar in the cookie gave me small bursts of happy hormones that were lacking through the day from being in an unhappy home. I don’t know if it was the depression or something else, but getting out of bed in the morning is a herculean task for me, from as far back as I can remember. The libidinal investment I had in food helped me out-do many anxious thoughts and feelings that would flood me upon waking up, lay on me like a weighted blanket, and help me get out of bed. I would bait myself out of bed saying, “Well, at least wake up for a soothing cup of chai and biscuits and the foods to follow.”

On being diagnosed with UC, and then understanding the role that diet plays in flare ups, I had to bring my emotional eating in control. My diet was pretty balanced and I wasn’t overeating or eating only processed unhealthy food. I enjoyed a nice home cooked meal just as much, and I enjoyed working out among other things. It was the occasional dessert that I used to self medicate from the existential pain that lives with me. I would argue it was a healthier (if not the healthiest) form of coping than drugs, or alcohol, that I could see myself being vulnerable to, given my mental health challenges. And so to have that taken away, especially because I manage my symptoms primarily through diet and herbal medicine, was crippling. (*A tiny caveat here would be to follow your doctor’s advice above all.)

I was crippled severely with anxiety and depressive feelings that I didn’t have my medicine for anymore. It took years for me to be able to develop another system of coping. And I, as a mental health practitioner, do believe that each needs to find their own way of a positive sort of coping, because life is crippling as it is. And to have a chronic illness affects not just the body but the mind, as the two are not separate. It affects your entire being. 

And so I started to look for other forms of libidinal investments that I could make that would propel me forward in life, help me keep going and most importantly be able to wake up in the mornings. And such is the beauty and the complexity of the human psyche that it is full of multiple impulses shooting within us at all times, enticing us towards several different things. Desire! Such a wonderful source of energy if gathered in the right way! And so I focused on other aspects of my desire, other than food. An instinct just as powerful, for which we can go empty stomached for hours, gripped totally by the magic of artistic pursuit. There came dancing! It saved me. I decided to take it up seriously. Like really get into the nuances of this artform. And that became a propeller for me to wake up and continue living. All this frustrated libidinal energy around food that wasn’t finding its resolution was now being directed towards dancing, psychoanalysis, music, my love for relational equations (friendships, the romance within it), my pet rabbit, my work as a therapist, my love for clothes! I found plenty that emerged from the creative impulses within my psyche that are equally as pressing as our desire for food, water, or air. 

It was my learning that the human psyche, the body-mind, is layered, and multifaceted, and so when life damaged one or more aspects of it, whether it is one’s health, or finances, or relational grief, there is always more within the psyche that is still bubbling for expression, for experience. And we can ooze with life still using those psychic impulses, the creative juices that continue to flow as you go through the trials and tribulations of the human existence. So rage till the dying of the light. May you find several libidinal investments to make that create a structure for positive coping for you.

“Do not go gentle into that good night, Old age should burn and rave at close of day; Rage, rage against the dying of the light.”

— Dylan Thomas - 1914-1953

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