Month: February 2021

IBD Motherhood Unplugged: Womanhood Questioned by Crohn’s Disease

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Motherhood is so much more than a word—it’s an expectation and an identity. It’s a right of passage many girls dream of when they think about their future and what their family will look like. But family planning, pregnancy, and motherhood are far from a given, especially for those with chronic illness. As an IBD mom of two with one on the way, I’ve recognized that while my story and my experience may comfort and guide others—it’s only that, one story. I fully understand I am extremely lucky not to have the struggle of infertility or physical limitations to hold me back from having children, despite my Crohn’s.

This week kicks off IBD Motherhood Unplugged, an ongoing series that will be shared periodically in the months and years ahead on Lights, Camera, Crohn’s. The series will feature guest posts from women with Crohn’s and ulcerative colitis who may not physically be able to carry a child, who battle infertility, who grow their family through adoption and surrogacy, who have children following loss—the list goes on and on. Ultimately, I want everyone to feel seen, heard, and understood. There’s not one cookie cutter approach to becoming a mom or having a family.

The first article is by my dear friend and fellow patient advocate and thought leader Tina Aswani Omprakash. Tina is a 37-year-old woman in New York, living with perianal, fistulizing Crohn’s Disease. She’s endured more than 20 surgeries and lives with a permanent ileostomy. Since she was a child, she thought she could put off motherhood and did so through many years of virulent disease. At one point, as a young adult, she needed to go on a disability and be taken care of by her mom. When she got married to the love of her life, Anand, nearly 11 years ago, the questions started.

“Being of South Asian descent, the nosy, busybody aunties at weddings and cultural events would always find ways to jeer and sneer at the fact that I hadn’t had a child yet. And after I started Stelara 5.5 years ago and tasted remission for the very first time in a decade, I too began to wonder: is it time for me to consider my own child?”

I’ll let Tina take it away and explain her struggles with family planning and finding out pregnancy wasn’t in the cards. Her heartfelt words and openness about feeling excluded from being an IBD mom, shed light on an important topic and aspect of our illness that is often not discussed or talked about. We hope in sharing this—if you are going through the same situation, struggles, or worries, that you know you are not alone.

Genetic counseling, surrogacy, and reproductive endocrinologists, oh my

In April 2016, I went to see a reproductive endocrinologist, who did a transvaginal ultrasound. Based on his medical expertise, he thought he could retrieve maybe three of my eggs, which was incredible news given everything I had been through surgically. He had proposed 2-3 rounds of IVF for hormone stimulation and egg retrieval but there was no guarantee that the eggs retrieved would be viable to be combined with my husband’s sperm. He didn’t think carrying the baby was a good option for me given all the scarring from surgery and fistulae. Moreover, fertility is often affected by j-pouch surgery and later excision.  As such, he offered me the option of surrogacy and asked me to seek genetic counseling due to the hereditary nature of my Crohn’s Disease.

Anand and I went through months of genetic counseling, an expensive process that didn’t lend to any substantial findings. Crohn’s, as many doctors have explained to me, is spread out over several genes and one gene cannot be targeted necessarily as a form of gene therapy. That left us both stumped as his family has a history of an autoimmune condition called ankylosing spondylitis and I have various skin and bowel autoimmune conditions on my side of the family.

During this time, we also looked into the surrogacy process. Since the reproductive endocrinologist recommended that I not consider a pregnancy myself given all the surgeries, fistulae, and pelvic cysts I’ve had, we obliged. But considering all the legal and surrogacy fees, we were looking at $100,000 for one surrogate pregnancy (at least), which was an extraordinary sum of money for us. So, we decided to table having a child for the time being and think over adoption, another expensive proposition.

Tick, tock, tick, tock…

Two years passed and we came to realize that there is no easy solution. During that time, the IBD Parenthood Project shared excellent knowledge for women with IBD to conceive and carry a pregnancy to term safely. And I thought, let me ask my GI doctor now about his thoughts. Unfortunately, he reiterated the same thoughts as the reproductive endocrinologist shared: for someone with my surgical and fistula history and aggressive family history of Crohn’s disease, it may be best not to try. He also said the risk of me using hormones for egg retrieval would risk a blood clot in a patient with my history.

Part of me was still in denial that motherhood may never be a possibility. Within weeks of my conversation with my GI doctor, I was diagnosed with mild endometriosis by a premier OB/GYN surgeon in NYC. I asked him, “What do my options for pregnancy and fertility look like now?” And he said very openly and honestly, “Bleak at best. Let’s say you do carry the pregnancy and don’t lose the baby, Tina, will I have to cut through bowel and scar tissue to get to your baby?” After a brief pause, he said, “I would recommend adoption if having a child is something you really want to consider.”

While, on one hand, I genuinely appreciated his honesty, on the other hand, the statement, “cut through bowel and scar tissue to get to your baby” seared through my mind for months after and has left its mark even today. I needed to hear it; I needed my bubble to pop. But the statement no doubt cuts and ravages every minutiae of my being as a woman. Not having the privilege to choose to have a baby was suddenly taken from me in that one fell swoop and it left my head spinning.

Losing Motherhood to Crohn’s Disease

My God-given right as a woman was taken from me in that instant. As if having six fistulae and Crohn’s wreaking havoc on my pelvis and reproductive system wasn’t enough, let’s take Tina down another notch. Let’s take away her right to choose to have a child.

Even though voluntary childlessness is always a choice, now I didn’t even have that choice. Childlessness was thrust upon me like a stab wound in the back. All I was left with were unaffordable options of surrogacy or adoption.

So why not adoption? It’s simply too expensive and I do wonder about whether I’ll be able to even take care of the child given my constant roller coaster of health issues and medical appointments. Hiring full-time help seems out of reach, too.

Include Women Who Aren’t Mothers

That day with the endometriosis surgeon was nearly three years ago. And I’ve done a lot of work in therapy to process much of it. But I can’t say I don’t feel left out every time I see a mom scolding her child or complaining about her child(ren)’s mischievousness because I, like many other women with chronic illnesses, will never be able to experience the joys and sorrows of motherhood.

As happy as I am for my friends with children, there is a deep void I’m reminded of every time someone else gets pregnant, hosts a baby shower, or sends along amazingly cute photos of their child(ren). I will never be able to have that, no, but I wish I could still be included in the mommy paradigm as a cool aunt or as a godmother. But I’m often not, and that makes me feel sad and excluded.

Dealing with the Cultural Aspects

In American culture, it’s hard enough as it is to be a woman of my age without a child, but in Indian culture, you’re really considered a pariah of sorts. I’m often asked the question of when I will bear a child now that Anand and I have been married for so many years. I usually find ways to dodge those questions by changing the subject or by simply saying, “whenever the time is right.” It’s not a conversation I want to be having with acquaintances nor do I want to be fodder for gossip.

But when it comes to my close friends saying, “Tina, gosh, you would have made an amazing mother, you have so much good to impart on to the world,” it feels good and bad all at once. I’m flattered that someone would think I could do a fine job as a mother but saddened by the fact that I will never know that for myself.

Becoming a Mother Hen

Alas, today in 2021, I continue to focus on my advocacy work and my graduate program, in attempts to focus my attention elsewhere. And in the words of my therapist, “if I cannot be a mother to a child, I can at least be a mother hen to my IBD community, helping to educate and guide patients of underserved populations who would otherwise feel bewildered.” I take a lot of solace in that and recognize that I wasn’t supposed to be here today with all the near-death experiences I’ve had with my brand of Crohn’s disease. All I can express is my gratitude for being alive today, for being able to do this work, and for being able to be a mother hen in my own way to my community.

To my fellow IBD women & chronic illness warriors: please know you are not alone. Please know it’s okay to be sad, angry, and terrified. Many of us are struggling deeply with the idea of motherhood as our clocks keep ticking. Do your research, learn what your options are and make the best decision with your specialist(s) regarding conception and pregnancy. And if having a child is not in the cards, that’s okay too. Never forget (and I need this reminder too) – not having a child doesn’t make you less of a woman.

Connect with Tina

Blog: Own Your Crohn’s

Instagram: @ownyourcrohns

Facebook: @ownyourcrohns, Own Your Crohn’s Community (Private group created for the Global South Asian community living with inflammatory bowel diseases)

Twitter: @ownyourcrohns

Digital Dating Tips for IBD’ers: How I Met My Husband and What I Learned

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Before the dating world was about swiping right or left, I met my husband online. It’s something I was a little embarrassed about sharing for a long time, especially while being a morning news anchor. The year was 2013, while online dating was becoming more common, it was still a little taboo. At the time, my Crohn’s disease was a secret from the public. Much like the backstory of my health, I wanted to keep my love story under wraps much of the same way.

So, when I signed up for eHarmony on a whim after attending my co-anchor’s wedding, rather than putting my location as Springfield, IL (where I lived and did the news), I told a little white lie on my profile and said I lived in St. Louis. I know, I know…a little shady! But hear me out. I chose to do this to disguise my identity and vowed to myself that I’d be upfront and honest with whoever I spoke with about where I lived from the initial conversation. I also told myself I’d hold off on sharing that I had Crohn’s until I met someone worth my time and deserving of my energy. It wasn’t something I would share over email or on the phone prior to meeting.

Finding Love in Three Days

I was on eHarmony three days before I met Bobby. Yes, three days. I feel incredibly fortunate that after years of dating and not finding the right person that all it took was a couple emails and some phone calls. As soon as Bobby and I started talking I gave him an “out” and said I understood if he wasn’t interested in long distance (90 miles apart), but he said he didn’t care and wanted to meet me. He drove to Springfield on a Wednesday after his workday and took me to dinner. Little did we know that would be our last first date.

From there he visited me the following week and we went out for Mexican. Two dates in, I didn’t feel ready to disclose I had IBD. But as the days turned to weeks and I started feeling closer to him, I knew it was something I had to get off my chest.

Disclosing to My Boyfriend (now husband) That I Have Crohn’s

On our third date (almost a month of talking/hanging out) we went to a boathouse and had lunch outside on a gorgeous St. Louis August afternoon. I was nervous, but at this point in my patient journey (8 years in) I felt confident about my IBD elevator speech. After the appetizer arrived, I let him know I had Crohn’s disease. I explained what it was, how it had affected me, the medication I was on, but more so than what I was saying, I was paying more attention to his verbal and non-verbal cues. I had been with guys in the past who ghosted me in times of major health emergencies. I had been made to feel like my chronic illness was a joke or an excuse. And I wasn’t going to put up with any of that bs again or be made to feel like a burden.

Photo taken after I told Bobby I had Crohn’s.

In that moment, Bobby made me feel comfortable and he didn’t seem phased by what I had shared. Not in a dismissive way, but in a way that made me feel like just with the distance, my disease wasn’t reason enough in his eyes to explore other options.

Advice for Navigating Online Dating with IBD

  1. Don’t make your IBD the headline on your profile. While your IBD is a big part of who you are, it’s not your whole identity. It’s not necessary to include you have a chronic illness on your dating profile unless you feel so inclined. Personally, I wouldn’t give someone the privilege of knowing that side of you unless you feel they are worthy. At the same time, if you have an ostomy and you prefer to share photos of yourself like that on your profile—more power to you!
  2. The cliff notes version of your health story will do. When you decide to share that you have IBD with your partner, don’t be doomsday. Don’t go on…and on…and on…about how debilitating and horrible it’s been and how miserable you are. Give a high-level elevator speech that “dumbs it down” a bit. You don’t need to downplay how hard it is but allow your partner to take some initiative and educate themselves and ask questions when they have them. How you share and present your illness to someone who may have never heard of IBD will have a lasting impact.
  3. Don’t settle. Trust your gut. If a partner is making you feel uneasy or unhappy, don’t make excuses for them. Read between the lines on a person’s dating profile—see if you think their personality traits and interests will compliment you and your needs. Not everyone is nurturing and empathetic. If you see red flags that your partner lacks in those areas, think about whether it’s going to be a healthy relationship for you to be a part of.
  4. No need to be shy! When we’re battling our health, often the thought of being vulnerable and open with a stranger can seem overwhelming. IBD is complicated and the stress of a new love interest can make us feel a bit out of control. But it can also be an exciting, sweet distraction from health challenges. Love gives a sense of normalcy. Just because you have IBD doesn’t make you unworthy of deserving love. Think about the type of partner you want holding your hand as you battle a flare from a hospital bed.
  5. Love doesn’t need to stop because of the pandemic. I’m an old married woman now (ha), going on eight years since I was on eHarmony and matched with Bobby, but I wouldn’t have it any other way. There are so many sites and apps these days, I don’t even know all it entails. Gone are the days of only eHarmony, Match, and Plenty of Fish. 😊 If you’re feeling lonely and isolated like so many of us during this pandemic, and you’re single with IBD, don’t feel like you have to press pause on finding a connection or your person.

What IBD’ers Have to Say About Finding Their Match

Erica: “My husband and I met on Coffee Meets Bagel in 2017. We texted three weeks before meeting. I told him I had Crohn’s after texting a couple of weeks before we met. I had to reschedule our first date because of a health issue and didn’t want him to think it was because of him. I also felt like he should know what he was getting into.”

Michelle: “I met my husband in 2015 when Hinge came out! I was having a flare and threw up on our first date! I met him when I was going through getting diagnosed and he was so supportive through it all.”

Christine: “Disclose early on! I disclosed at about two months of dating with my fiancé and I felt like things could go further. I think it’s something the other person should be aware of. Not everyone is ready for that you need to know that you will be supported through that journey! We connected through Facebook! Sounds crazy, but here we are!”

Sarah: “Dating/meeting people is so hard nowadays and then throw in a chronic illness and it doesn’t make things easier! Personally, I prefer to be up front about my UC because if the person is going to like me or if this is going to work out, they are going to have to be on board with my UC, too! Whether I like it or not, it’s a part of who I am.”

Ryann: “I met my husband in 2017 and I told him on our second date. Our friend set us up and she had already shared that I had IBD with him. Previously, I had told other guys on our first or second date. One guy came back and apologized for being so weak and not contacting me again after that date. I didn’t reply, more because I didn’t blame him, but also because I found him to be incredibly dull! This was back in the beginning days of Tinder!”

Natasha: “I like to share early (in or around the first date) about my health so I don’t develop an attachment if they aren’t comfortable with chronic illness. Usually, it leads to a good conversation either way. Recently, I shared about my Crohn’s over text message and the guy was very inquisitive and only wanted to learn more, about me and about Crohn’s! I also have a pic of me with my ostomy in my dating app profile. It’s subtle, but if you know it’s there or know what an ostomy is, you’ll know immediately what I have.”

Payge: “My Tinder profile pictures had me with my bag and my current boyfriend googled what it was before he messaged me. He told me when he knew what it was, he instantly thought ‘I want to take care of this girl’…that’s how it went for me!”

Allison: “You don’t have to share any more than you’re comfortable with—if you want to disclose in your profile, great! If you wait until date number five, that’s okay, too! There are no hard fast rules for when or how you should share your story with someone. It’s YOUR story and every situation is different. Anyone who responds negatively or acts as if your illness will be a burden is NOT worth your time. The right person won’t care. Remember—nobody is perfect. Your vulnerability might allow the other person to share something they’re also trying to figure out the right time for. I’ve been online dating for five years now, met my current boyfriend on Hinge in September.”

Why Every Person with Chronic Illness Needs to Read “What Doesn’t Kill You”

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Prior to receiving a chronic illness diagnosis, it’s incredibly challenging and nearly impossible to fathom ‘forever sickness’. In Tessa Miller’s book, “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”, she masterfully articulates the highs and lows of life with Inflammatory Bowel Disease (IBD). From navigating the diagnosis, flare ups, the healthcare system, relationships, and the mental health component, she’s created an invaluable resource that I wish every single person with chronic illness could be handed the moment they find out their life story has taken an unforeseen turn.

As someone who was diagnosed with Crohn’s in 2005, two months after college graduation, I wish my former self had these powerful words at my fingertips. The overwhelming nature of IBD can be nearly suffocating at times. As I read this page-turner of a book, I felt seen and understood. I found myself nodding my head, because I could relate to so much of her story and so much of her sage advice. I felt like a college student highlighting what felt like the whole page, because it was ALL so important.

Tessa and I are both journalists. We both have Crohn’s. We both randomly grew up in Illinois. I connected with her over social media after reading her New York Times article, “Five Things I Wish I had Known Before My Chronic Illness.” The article had an impact on me, so when I heard she landed a deal with a publisher, I anxiously awaited for this book to drop.

In the beginning of “What Doesn’t Kill You,” Tessa writes, “I became a professional patient, and a good one. I learned that bodies can be inexplicably resilient and curiously fragile. I would never get better, and that would change everything: the way I think about my body, my health, my relationships, my work, and my life. When things get rough, people like to say, “this too shall pass.” But what happens when “this” never goes away?”

Finding the Right Care Team

When you live with a disease like Crohn’s, it’s imperative you trust your gastroenterologist and care team and are confident in how they help you manage your illness. I always tell fellow patients to take a moment and think about who they will feel comfortable with at their bedside in a hospital room when they’re flaring or facing surgery. If it’s not your current doctor, it’s time to look elsewhere. Tessa breaks down the “qualifications” for getting a care team in place. From finding a doctor who explains why they’re doing what they’re doing and why to a doctor who looks at you as a human, not an opportunity.

“Good doctors see their loved ones in their patients; they make choices for their patients that they would make for their own family. Asking a doctor, “Why did you choose this line of medicine?” will reveal a lot about what drives them and how they view their patients.”

The Grieving Process of Chronic Illness

Receiving a chronic illness diagnosis forces us each to go through the grieving process. For many of us, we were naïve and felt invincible before our health wasn’t a given. We’re so used to feeling as though we’re in control of our destiny, that when we lose that control, we spiral, understandably. Tessa interviewed Paul Chafetz, PhD, a clinical psychologist based in Dallas. Dr. Chafetz is quoted in the book saying, “We go through life with an illusion of safety, guaranteed health, even immortality. Acquiring a chronic illness pierces that illusion, and this is a loss. Grieving this loss is an integral part of adjusting to the illness.”

Take a moment to stop and think how you coped those first few weeks and months after finding out you had a chronic illness. While acceptance takes time and comes in different stages, Tessa explains how flexibility and willingness to adapt to your new “normal” is even more important.

“Rather than searching for big, sweeping acceptance, then feeling like a failure when it doesn’t come, chronically ill folks can enact small, empowering steps, such as taking required medications, learning everything we can about how our diseases work, seeing doctors regularly and being prepared for appointments with a list of questions, advocating for our needs and wants, figuring out which foods makes us feel good, and going to therapy and/or connecting with a support group.”

In my own patient advocacy and experience living with Crohn’s I can attest to the fact that we all spend a lot of time wishing for our past and worry about what our futures will hold, rather than focusing on the right now. The majority of IBD patients are diagnosed prior to age 35. This leads most of us to experience the big milestones of adulthood (career, finding love, living on our own, family planning, etc.) with a disease in tow and wondering how that disease is going to complicate life or hold us back from accomplishing all we aspire to.

Bringing on the Biologics

Tessa calls herself an “infliximab veteran,” she spends a great deal of time talking with new patients and caretakers, mostly moms of young IBDers, about their fears. Most questions I receive through my blog and social media also revolve around biologics and the worries people have about side effects and whether the drug will fail them or be a success. I feel confident deeming myself an “adalimumab veteran”, as I’ve been giving myself Humira injections since 2008.

As patients we are faced with difficult decisions all the time and must look at the risk versus the benefit. Having health literacy and understanding your actual risk from a biologic is something that should be communicated with you from your physician. Tessa’s doctor explained to her that six in 10,000 people who take anti-TNF agents (Humira and Remicade) get lymphoma. But as patients, all we see on the internet and in the side effect notes are “lymphoma.” Force yourself to dig digger and remind yourself of your alternative—to not feel better.

The Truth Serum of Chronic Illness

One of the superpowers of chronic illness is that we get to see which family members and friends come to the forefront and which fade to the background. Not everyone is cut out to be a caregiver, but you’ll quickly see who has empathy and who genuinely cares. In my own personal experience, it’s helped me get out of relationships with guys who were no where to be seen while I lied in a hospital bed and allowed me to distance myself from friends who couldn’t find the time in their day to check in when they knew I was flaring.

Tessa says that chronic illness forced her to peel back the layers and the isolation wall she put up, too. Chronic illness has shown her that people do more than just hurt each other— “they nurture, they listen, they enrich one another’s lives.” Her IBD also empowered her to be brave enough to put an end to unhealthy relationships that weren’t benefiting her well-being, both with friends and love interests. Her Crohn’s has showed her that not every friendship is meant to support you in the same way.

This is a great piece of advice. As you live with a chronic illness, you’ll come to know which friends you can share your deep dark secrets and worries with, and which you give the high-level cliff notes version of your experience to. Your chronic illness will help you set those boundaries in a graceful way.

Her love story with her husband embodies what those of us with chronic illness deserve, a partner who sees us as more than our disease, but understands the severity and complexity at the same time.

Juggling a Career and Crohn’s

One of the biggest challenges of life with IBD is knowing how and when to disclose your health situation with your employer. You may wonder how the news will be received, if it will jeopardize your chance for promotion, if your coworkers will resent you…the list goes on and on. As someone who worked in the TV industry as a producer, news anchor and reporter for nearly a decade, and as a PR professional and corporate communications specialist, I’ve been lucky that all my bosses have been incredibly understanding of my struggles with Crohn’s, but never used them against me in any way. I’ve always waited until after I have received the job offer and then told my boss in a meeting the first week of work. This alleviated some of the stress on my shoulders and ensured my coworkers wouldn’t be blindsided when I had a flare that landed me in the hospital. By communicating openly, it also to set an expectation that I may not always feel up to par and that I may need more bathroom breaks or to work from home or come in late after doctor appointments.

Tessa so eloquently writes, “You want your boss to understand that while your disease affects your life, you’re still capable of doing your job. Deliver the necessary facts about your illness without bombarding your boss with information—keep it direct and simple. Be clear about how you manage the illness and that although you do your best to keep it under control, it can flare up. Tell your boss what you’ll do if and when that happens.”

Realizing the Power of Pain

One of my favorite analogies that Tessa shares in the book is that each of us carries an invisible bucket, some are heavier than others, and the weight of that said bucket is constantly in fluctuation. She says that as she started connecting with those in our community, she came to realize that her personal pain was no better or worse than anyone else’s. So often we weigh our struggles against those of others, and that’s not helpful to beneficial for anyone.

“Think about it: If a friend came to you in pain, would you tell them that other people have it worse and that their pain isn’t valid? If you did, you’d be a lousy friend—so why do you speak to yourself in such a way?”

Rather than thinking that ‘someone always has it worse’ ask for support when you need it. Don’t downplay your struggles out of guilt thinking you aren’t deserving of help. Give support when you can but don’t forget about the person you see looking back in the mirror, be loving, kind, and patient to them, too.

Leaving the Rest to Imagination

Some of my other favorite excerpts from the book are Tessa’s “Seven Secrets”. The secrets (both big and small) she keeps from loved ones and friends about her experience with IBD. The secrets are relatable. We don’t want to come off as a burden. We don’t want to scare those who mean something to us. We want to hold on tightly to the notion that our illness doesn’t define us, so we often don’t disclose the true reality of what encompasses our illness.

Another section I know you’ll love is “Thirty-Eight Experiences of Joy” where Tessa shares quotes from 38 different people with chronic illness and how they’ve discovered joy despite their illness. I’m honored to be featured in that section of the book.

She understands the power of community and how finding your tribe within your disease space and outside of it is an important aspect of disease management and life fulfillment.

“Connecting with other chronically ill people teaches you how to carry each other’s weight—when to lift when you have strength, and when to share the burden when you have no energy left,” writes Tessa. “I’ve found the chronic illness and disability community to be one of endless empathy and generosity.”

The Gratitude That Comes with Chronic Illness

I’ll leave you with one of my favorite quotes from the book and a perspective that I wholeheartedly share:

“At the beginning of my illness, I was so inwardly focused on what I’d lost that I couldn’t see the gifts illness had given me. Mom, a determined optimist, taught me to always look for the silver lining. Mine is this: Yeah, my body won’t allow for any bullshit—no jobs I hate, no relationships I’m not fulfilled by, no hours crying over wrinkles. Illness made me braver, kinder, and more empathetic, and that gives me way more radical power than the faux control I was clutching to for so long. In the most unexpected way, illness freed me. It compelled me to begin therapy, which kick-started the process of tending my wounds old and new. It made me focus on the present more than the anxiety of the future. And it made me be in my body in a way I never experienced before. Suddenly, I had to mindfully care for my body and brain as best I could and understand that beyond that, it’s out of my hands.”

Connect with Tessa:

Twitter: @TessaJeanMiller

Instagram: @tessajeanmiller

Her website

Purchase “What Doesn’t Kill You: A Life with Chronic Illness–Lessons from a Body in Revolt”

Amazon

Barnes & Noble

IndieBound

Stay tuned to my Instagram (@natalieannhayden) for a special book giveaway kicking off today (February 8)! Five lucky followers in the United States will receive a FREE hardcover copy of Tessa’s book.

The mental health burden of IBD and coping through community and therapy

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When you live with chronic illness, you experience a wide range of emotions and personal experiences that shape you. Life can feel like an uncertain rollercoaster ride, you never know when the next twist or turn is going to happen. This week on Lights, Camera, Crohn’s, 21-year-old Parsa Iranmahboub, candidly shares the mental health burden that IBD brings upon a patient. Diagnosed with Crohn’s when he was only eight years old, Parsa shares the perspective of what it’s like to be a pediatric patient who has grown into adulthood. He’s currently a student at UCLA and the Education Chair for the Crohn’s and Colitis Foundation’s National Council of College Students.

Parsa explains the psychosocial component of life with Crohn’s disease and ulcerative colitis by breaking it down to anxiety, embarrassment, guilt, and loneliness. He recently spoke about this at the Crohn’s and Colitis Congress as well as on IBD Patient Insider and his powerful words resonated with me and I know they will with you, too. Here’s Parsa’s breakdown of the IBD patient experience:

Anxiety: Being a bathroom disease, there is often the anxiety of whether a patient has easy accessibility to a restroom when they are out. But there can also be anxiety related to a patient’s diet. When I was younger, I was placed on a low sodium diet due to one of my medications. If I wanted to eat out with family or friends, there would be this anxiety of whether I could even eat anything from the restaurant. There’s also the anxiety that stems from extra-intestinal manifestations. I have a history of developing fistulas. And during my sophomore year of college, my labs were not looking too good, I was flaring a little bit, and I began to worry if this meant I would develop another fistula. I began to wonder how I would deal with a fistula as a college student. How would another flare up affect my grades and my ability to get my work done? I lived in a communal style dorm, so how would a sitz bath even work? Essentially, with anxiety there can be this fear of the disease taking over my life and how can I constantly accommodate it.

Embarrassment: Embarrassment can arise in numerous forms. For one, there’s the poo taboo. But there can also be embarrassment from when you are flaring. From when you are losing weight, when you no longer look healthy, when you now look “sick.” There are the side effects from medications. From when you begin to gain weight, develop acne, and now have that dreaded moon face. Let’s not forget the impact of extra-intestinal manifestations. In 6th grade, I had surgery for a perianal fistula. After the surgery, I had to wear tighty whities with a maxi pad to help absorb the pus. It would be an understatement to describe how much I began to despise physical education. Not because I had to exercise and run around. No, I was always too active of a kid to hate PE. But because we had to change into our uniforms during the beginning of class. And I was embarrassed to be in the locker room. I was embarrassed that everyone else would look cool with their boxers, but here I was with my tighty whities and a maxi pad. And it might sound ridiculous, almost like a scene taken from the “Diary of the Wimpy Kid”, but to my sixth-grade self, looking cool and being like everyone else mattered.

Guilt: There is often the guilt of feeling like a burden for others. That others have to not only be flexible with you but that they need to make accommodations because of you. “Oh, you all want to go hiking, well I can’t because there’s no accessible bathroom.” “Oh, you all want to eat at this place, actually can we go somewhere else where I can better tolerate the food?” There can even be instances where you feel guilt for believing that you no longer are a good friend. That since you have to refuse to hang out with friends because of fatigue or pain, your friends probably think you simply don’t enjoy hanging out with them. But there can also be guilt from a non-compliant label. When I was younger, I would receive weekly injections. Soon, I began to throw up after every injection. My doctor switched me to the pill version, but it would still make me feel incredibly nauseous. So much so, that I would refuse to touch the pills. Instead, I would take the pill container, open the lid, slowly pour the pills into the lid, pour too many, attempt to pour the extra pills from the lid back to the container, and once again pour too many pills back. It was a whole process. But I simply refused to touch the pills.

Well, it shouldn’t be a surprise that eventually I became non-compliant. Consequently, I switched medications and soon developed acute pancreatitis. At the onset of my symptoms, I was out of the house and had to call my dad to pick me up because I was continuing to throw up blood. And in the car, I told him “Dad, I think I’m going to die.” Thankfully, it was an over exaggeration. But at that moment, it wasn’t.

Parsa with his parents.

Now that I reflect on the moment, not only do I feel guilty for putting myself through that situation, but for also putting my family through that. I can’t imagine being a father and hearing your son tell you those words. And all of this happened because I couldn’t get myself to take those stupid pills. So, not only was I labeled as a non-compliant patient, a patient who was too immature to take his medications, but I was now also a patient who had “hurt” his family.

Loneliness: IBD is an invisible disease. You might look at a person and not realize they are living with a chronic illness. The invisibility is both the disease’s blessing and curse. There have been so many instances where I’ve been happy to have the ability to put on a mask and pretend that everything is okay. That my friends and peers do not have to associate me with a “disease,” a connotation that I despise so much that I often introduce my chronic illness as Crohn’s and not Crohn’s disease. However, because of the invisibility, the disease can feel extremely isolating. You might not know anyone else who can relate to your experiences/feelings. In fact, despite being diagnosed at a young age, for almost a decade I refused to share my story with friends and those close to me. It wasn’t until I met an IBD patient for the first time who was my age that I began to realize the importance of a shared community.

Dr. Tiffany Taft , PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, spoke alongside Parsa during that Crohn’s and Colitis panel about Mental Health as it relates to IBD. As a Crohn’s patient of 19 years herself, she offers a unique perspective for her patients. I asked her when an IBD patient expresses these feelings of anxiety, embarrassment, guilt, and loneliness how she helps people deal with the struggles.

“The first thing I do is simply listen and reflect to the person my understanding without advice or judgement. It’s important to let someone tell their story before interjecting with any sort of interpretation or the like. Then, I start with some education about how our thoughts affect how we feel and how we behave. And that these thoughts are often on autopilot or may feel like they’re on an infinite loop and impossible to turn off,” explained Dr. Taft. “My goal is to help the patient understand their thinking and learn to slow it down and take a step back from their thoughts to be able to evaluate them, and maybe either change them or not let them have as much power.”

She went on to say that from there her and her patients tie their thoughts into other symptoms like anxiety, shame, or guilt, to see patterns and opportunities for change.

“It’s not an easy process, but most people can succeed. Loneliness has been harder during the pandemic. Social distancing has created a lot of isolation without an easy solution. I encourage staying connected via video chat, texting, and social media (so long as it’s not stressful!) People say that online interactions aren’t as fulfilling, and that’s probably true. But if I shift my thoughts from this negative lens to a more positive perspective, then it can help offset some of that loneliness until we can all be together again.”

The Decision to Open Up

It takes time and patience for many of us to come to terms with our diagnosis and decide how we want to present our experience to the world. For both Parsa and me, it took us a decade to take off our proverbial masks and share our reality with those around us. Parsa says he decided to share his patient journey at the end of freshman year of college after he joined a research lab at the UCLA Center for Inflammatory Bowel Diseases. He met someone for the first time who was his age and had IBD.

“When I was talking with her, this sort of light bulb just sparked. I realized I could connect with this person in a way I couldn’t have connected with anyone else before. She truly understood the challenges I was facing or had faced. Not from a scientific or “oh, I see” perspective, but from a “oh, I know cause you’re not alone” perspective. This connection was essentially my first exposure to the IBD community, and slowly, I began to become more involved in the community.”

The Power of Connecting with the IBD Community

Parsa went from forming his first spin4 team to joining the National Council of College Leaders to becoming more involved with his local chapter in California. He then started a local support network for college students on the UCLA campus. His advice for patients and caregivers—find a support network within the IBD community.

Foundation of National Council of College Leaders (NCCL)—this group of college students from across the United States volunteers with the Foundation to provide a distinct voice for young adults with IBD. Members also connect on how IBD affects them as students, athletes, and partners in a relationship, the intersectionality that stems from a patient’s identity, and tips for having an ostomy bag, reducing stress through coping mechanisms, and applying for accommodations at school.

Parsa also co-founded IBDetermined at UCLA, a student organization geared towards providing a support network and advocacy-centered space for UCLA students with IBD.

“Even though there are some amazing national and local support groups, we noticed that there was a gap for local resources that focused specifically on the intersection between being a college student and an IBD patient. Hence, we wanted to create that more local space, where individuals could address their specific questions/concerns/thoughts relating to being an IBD college student at UCLA. It’s a space where our members can learn about accommodations that are available through our university’s Center for Accessible Education, can exchange tips and advice for navigating schoolwork and college life with IBD, can express their frustrations about the disease or the lack of university resources, and can share where the best and cleanest bathrooms are located on campus.”

Parsa says growing up with Crohn’s made him responsible at a young age. He learned about resilience. He learned to embrace the obstacles he has hurdled and to keep on pushing through even when he couldn’t immediately see the light at the end of the tunnel. Parsa says he learned to appreciate the time he felt healthy enough to live life not controlled by a chronic illness. Through the years he’s realized you can still be fortunate through a misfortune. This belief has given him a strong appreciation to make the most of the opportunities that come his way and refuse to take the easy way out.