I can remember the moment vividly. Leaving a gastroenterologist appointment three months post-surgery and crying walking to get sushi with my husband on a chilly November day in the middle of the workday. When I walked into that clinic appointment, I was hopeful I would never need a biologic medicine again. We were planning to start trying for a family after our June wedding, but my doctor knocked me back to earth and told me my Crohn’s was too aggressive and I’d be setting myself up for disaster if I attempted going med-free.
The tears flowed. I felt like a failure. I worried about bringing babies into this world while on a heavy-duty drug and if my surgery would provide me with the remission I had never achieved the first ten years of having IBD. I was so upset my husband-to-be and I both called into work and took the rest of the day off. Over sushi we talked about our future family and my health. Everything seemed at our fingertips but out of reach at the same time. That was November 2015. Sometimes we don’t realize how far we’ve come unless we look in the rearview mirror.
Now July 2022, we’re gearing up to celebrate our third child’s first birthday (July 14). We had his first birthday party over the weekend. It’s been a surreal and incredible ride since that November day. I often find myself looking at my three children and still feeling surprised my body was able to create them and bring them safely into this world.
Knowing this is our last baby and the last “first” of everything is bittersweet and amazing all at once. I feel an immense sense of relief and comfort being at this stage and knowing I don’t need to count on my body to sustain life through pregnancy or breastfeeding anymore. I’ve made it an entire year exclusively breastfeeding and if you would have asked me if that would ever be possible a year ago, I would have said no way.
One of my fears is when my next flare will be and leaving my children for days on end while I’m in the hospital. While I know it’s a not a matter of if, but when, it puts me at ease that my children are almost out of the baby stage, and I can begin to explain my health struggles and why I may not always be like other moms. When my oldest was born I hoped to stay out of the hospital until he started walking. He starts kindergarten next month. I can only hope I stay flare-free until my other two are that old.
Learning as I went as a woman with IBD
When I think back to that November day and the tough love my GI professed, I’m so grateful I followed her lead and trusted her approach in managing my Crohn’s. Back then, I wasn’t a patient advocate. The only IBD mom I knew was my cousin’s wife. I navigated the waters of family planning and my first pregnancy all alone without much guidance. Each pregnancy I became more well versed on how to juggle IBD and family planning and everything that comes along with it, but I think back to how isolating and overwhelming it can feel when you dream of having a family, but don’t know how to make it happen when chronic illness is in the mix.
No one knows how their family will play out or if fertility or loss will be a part of their story. It’s sad how many women with IBD choose to be voluntary childless, not because they don’t want to be a mom, but because of the limitations of their IBD and overall well-being getting in the way. A day doesn’t go by that I don’t recognize how lucky I am that I “get” to be a mom. Not every day is wonderful, but even in the trenches as a stay-at-home IBD mom of three littles with almost no breaks, I do my best to remind myself of that day my husband and I got sushi and dreamed of living the life we are living today.
Chronic illness forces you to wear many hats and approach life in ways you never thought possible. One of those hats is being an investigative journalist or sleuth. Each time something starts going awry with our health we immediately start the mental gymnastics about what could be going on and if the symptoms are linked to our IBD.
I find that even though my Crohn’s has been in remission since August 2015, that the next flare always looms in a cloud of worry when I’m not feeling my best.
This past week I experienced this firsthand when my eyes both started twitching nonstop, along with headaches. I started thinking about what I could have done to trigger this bodily response. Was it Crohn’s related? Hormonal from breastfeeding weening? A mineral deficiency? A problem with my eyes or vision? Sleep deprivation or stress? The laundry list of possibilities and worries weighed heavily on me. After consulting with my GI, OB, and having an appointment with my eye doctor, I learned the eye twitching was a result of allergies. I now do eye drops once a day to help. It was such a relief to get an answer and physically be able to do something to make myself feel better.
When you notice an uptick in IBD symptoms or health issues in general how do you get to the bottom of what’s going on?
Here are my top tips for getting answers:
•Be proactive. Don’t let things fester and let your anxiety get the best of you.
•Take physical notes, not just mental ones. As the hours turn to days it can be difficult to remember when symptoms began and if they progressed. Keep a simple log of what is happening, how often, the severity, etc.
•Reach out to care providers early and often. Send a quick message on the patient portal informing your GI about what is going on. With IBD, I find it helpful to always loop my gastroenterologist in since so many issues are often related to Crohn’s.
•Be seen. If symptoms don’t resolve in 3-5 days, it’s a good idea to be seen in person or at least a telehealth appointment. You can always get on the books and cancel an appointment if you start to feel better.
•Try not to Google too much. While this is always tempting and can feel like a quick way of gaining understanding, it also can lead to going down a dangerous rabbit hole of what ifs that possibly aren’t even relevant.
•Listen to your gut. You know when something feels off. Don’t drown out how your body is speaking to you through symptoms.
•Practice mindfulness and calming exercises. It’s not unusual to feel up against a wall or like you’re taking two steps forward and one step back with chronic illness. Remember to breathe. Take a walk outside to clear your head. Do all you can to rest your mind from stresses that can trigger your IBD.
I get how exhausting it is to constantly feel at odds with your body and worry about what could be going on. Suffering in silence and not communicating health challenges only sets you back from feeling your best. Be mindful of how you feel each day and feel empowered by collaborating with your care team and giving them all the necessary intel to have the full picture when figuring out your health story past and present.
Stay tuned for a special discussion on IBDLyfe, Wednesday June 29, 2022, at 1 pm CT about “How to Be Your Own Best Advocate in a Provider Setting.” I’ll be speaking alongside fellow patient advocate, Tina Aswani Omprakash. Register here.
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.
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.”
I paid for my groceries and casually pushed my cart full of food through the automatic door when I saw it. The bathroom where I experienced one of my scariest and most painful moments. The bathroom I had to run into after pulling over on my way home from work because I was in such debilitating pain, I couldn’t handle sitting upright in my car to make it the extra five minutes home. The bathroom where I lost all feeling in my arms and legs and where my fingers locked into painful contortions. I couldn’t even hold my phone to call my boyfriend (now husband) to tell him we needed to go to the hospital. The bathroom where I unknowingly happened to call my mom after accidentally hitting “Recent Calls” with my elbow. All she heard on the other line when she answered was me screaming. She didn’t know if I was getting raped, she didn’t know what the hell was going on and she was in a different state. God was watching out for me because she was able to call Bobby and let him know I needed help and I needed help fast.
He rushed to the grocery store and whisked me out of the bathroom and straight to the hospital where I found out I had a bowel obstruction.
I’ve been going to this same grocery store for nearly seven years. It’s been nearly six years since that dramatic experience occurred. But even now, five years into remission, I always go out the other doors because seeing that bathroom is a trigger. A trigger to one of my lowest points in my patient journey with Crohn’s disease. A trigger that caused my IBD to act up right in that moment this past week.
I was forced to go out of the grocery store that way as part of COVID-19 safety procedures to keep all incoming traffic through one set of doors and all outgoing traffic to another.
Coping with psychological triggers
When those of us in the IBD community hear the word “trigger”, food usually comes to mind. We casually say “oh that’s a trigger food for me”, but we often don’t pay much attention to the physical triggers in our lives that can exacerbate our symptoms—such as locations like that grocery store bathroom, relationships with certain friends and family members, the pressure of being enough and doing enough in comparison to our peers, the list goes on.
I interviewed Dr. Tiffany Taft, PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, and a fellow IBD warrior to get some clarity on this subject and to learn more about what steps we can make right now to protect our mental health and prepare for the unknown.
NH: As chronic illness patients–how can we best navigate triggers that instigate a stress response? (Other than avoidance)
Dr. Taft: “While avoidance feels like the safest option when it comes to situations that trigger our stress response, it simply kicks the can down the road in terms of the effects these situations have on our bodies. People living with chronic illness may collect multiple situations that trigger the stress response – doctor’s offices, hospitals, certain tests or treatments, making avoidance very risky if it means not managing the illness and staying healthy.
Try the “Exposure Hierarchy” exercise: Dr. Taft recommends making a list of activities or situations that are stressful, ranking them from the least stressful to the most stressful and picking 10 things. Rate those 10 things from 10 to 100 (100 being the worst). After making the list, she has patients start with number 10 and practice that task several times over the course of a week.
Before that, though, she teaches relaxation strategies such as deep breathing and grounding to help when the anxiety goes up. She says, “With repeated exposures to the feared situations and working through the anxiety, each time we do activity 10 again, it will feel easier and confidence grows. Once the patient is ready, they repeat with 20, 30, etc. until we get to the dreaded 100 which will actually feel less scary because of all the other work we did before.”
**NOTE** If you feel you have symptoms of Post-Traumatic Stress Disorder (PTSD) which include vivid nightmares, flashbacks, and feeling on high alert most of the time, you should seek treatment with a trauma therapist. The good news is research on treatments for PTSD show they are just as effective when delivered via tele-medicine.
NH: Can you explain (in layman’s terms) what goes on when we’re “triggered”?
Dr. Taft: “Triggered is setting off our body’s fight-flight-freeze response, and results in a cascade of physical sensations and emotions. The most common ones are muscle tension, sweating, shallow breathing, and heart racing. Unfortunately, this response can also trigger our guts to start acting up because of the brain-gut connection. It’s a completely normal process but when you have IBD it can trigger symptoms. Your thoughts may be all over the place and littered with “what if’s” and “I can’ts”. Your mind may revisit the worst aspects of past experiences or come up with even more catastrophic possibilities in the future.”
NH: As people with IBD–I know many of us are nervous about flaring and needing to be hospitalized all alone during this pandemic, while being at greater risk for getting COVID. Do you have any advice on how to cope/mentally deal with that worry/concern?
Dr. Taft: “Facing a flare and hospitalization was stressful in the “before times” so facing this during COVID19 is an extra level of stress. While we have video chat, it does not replace the comfort of physical closeness and touch we would get from supports who could be in the hospital with us. The good news is hospitals have figured out COVID quite well and the odds of contracting it while hospitalized for IBD are lower than they were at the start of the pandemic.”
If you’re facing hospitalization, think about your resilience in these circumstances. There were probably times you felt like you couldn’t handle it, or it was never going to end or get better, but here you are today reading these words. You made it through. It may not have been pretty, it was probably incredibly hard. Anxiety has a great ability to negate our memories of how much we’ve navigated in the past.
Feeling anxious? Do this: Write down the ways you coped before, what worked and what maybe didn’t. Evaluate your thoughts about being hospitalized. Are they accurate? Are they helpful? What are some alternatives that could help you feel less anxious? If that doesn’t work, sit with the anxiety, and try some deep breathing to calm your nervous system. The sensations will likely pass and then you can retry evaluating your thinking when you aren’t feeling so keyed up.
NH: What advice do you have for people during these already complicated and challenging times when it comes to managing mental health?
Dr. Taft: “This is truly a unique time in that we are all in this COVID19 boat together. We all came into the pandemic with our own life challenges, and those probably haven’t gone away and even may have been made worse. We’re coping with a lot of information, new rules every other day, grim statistics, and people bickering over who’s right or wrong. I’ve told every patient I see to turn off the news. Get out of the comments on social media when people are arguing the same points over and over.”
Steps you can take in your day-to-day: Dr. Taft advises not to spend more than 15 minutes a day on the news, so you can stay informed but not get into the weeds. Take social media breaks, especially if your feed is full of the same tired arguments. Focus your attention on meaningful activities that align with your values. Those are what will bring you some stress relief. And those are unique to you, so no list on the internet of how to cope with COVID is going to solve everything. Sometimes these lists make us feel worse because we’re not doing most of the recommendations. Be as kind to yourself as you would be to your best friend or a beloved family member. Nobody has it figured out right now even though some people like to say they do.
No one feels their best when they are unwell, and this is no different for those with chronic illness. There is an ebb and flow to anything chronic – meaning there are good and bad days – but what happens when your bad days outweigh your good days?
In a Twitter poll I conducted this week asking fellow patients how IBD has impacted their mental health, 40% said they’ve experienced depression and it’s a struggle, while 60% said they’ve dealt with mental health issues from time to time. I found it telling that no one who responded to the poll said their mental health wasn’t impacted at all.
This week a guest post from 31-year-old Louise Helen Hunt from the United Kingdom. She was diagnosed with Crohn’s in 2011 and has undergone four surgeries in the last three years. Louise opens up about her struggles with mental health, while living with IBD and offers incredible perspective and words of wisdom that everyone in our community should be mindful of. I’ll let her take it away…
I hit rock bottom six months into my IBD diagnosis. I struggled to find a treatment plan that worked. This involved months of being in and out of hospital. I tried very hard to be positive, but I was sinking. I refused help, I didn’t want to talk about it and I certainly didn’t want any more medication.
Fast forward to 2018, six years since those first depressive episodes and I was still feeling depressed. I’d gone through two major surgeries very close together, came out with a stoma, struggled with my body image and was starting a new job. It was a stressful time and I was not coping. I needed help.
There are lots of emotions experienced by those who live with IBD, both positive and negative. Depression and anxiety come up often on patient surveys from various sources, rates of depression are higher among IBD patients as compared to the general population.
The balancing act of IBD and Depression
Depression is a serious mood disorder that causes feelings of sadness and loss of interest. Depression can make you feel exhausted, worthless, helpless, and hopeless. It can also make dealing with daily tasks difficult. Tasks associated with managing a chronic illness may even feel insurmountable.
Depression often gets worse if it is not treated. IBD specialists are encouraged to assess not just the physical symptoms, but also the emotional symptoms. These can be:
Persistent sad, anxious, or “empty” mood
Feelings of hopelessness, negativity
Feelings of guilt, worthlessness, helplessness
Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex
Decreased energy, fatigue, being “slowed down”
Difficulty concentrating, remembering or making decisions
Insomnia, early-morning awakening, or oversleeping
Loss of appetite, weight loss, or overeating and weight gain
Restlessness and irritability
Depression is treatable. It is important to seek out a counsellor who has experience in treating people who live with chronic illness. And while it can take some time for the symptoms of depression to go away, seeking treatment can help improve your mood, your quality of life, and your ability to cope with IBD.
This can be in the form of Cognitive behavioural therapy (CBT) – an evidence-based treatment for depression and anxiety, it works to identify and change negative thought patterns and behaviours which can contribute to depression – or medication management which can be used in addition to therapy.
How to handle depression when you’re chronically ill
Talk to like-minded people – this could be online, at a support group or your friends.
Keep a journal – getting your thoughts out of your head can be very taxing but ultimately therapeutic.
Take your prescribed medication regularly.
Remember there is no shame in needing or taking medication to cope with your symptoms.
Be active – whether this is running or going to the gym, even something as simple as a regular walk can help: being outside and feeling grounded – literally – can lessen some of the symptoms of depression.
If you are having a crisis, please seek medical attention. Be proactive and pick up the phone.
Don’t expect to “snap out of it.” Instead, expect to feel a little better each day.
Ask for and accept help from your family and friends.
Know that positive thinking will eventually replace negative thinking as your depression responds to treatment.
Remember that feeling better takes time, and that your mood will likely improve gradually, not immediately.
This week–a guest post from an IBD advocate who continually inspires me. Meet Sonya Goins. She is a news reporter for a community television station in the Minneapolis/St.Paul area. Sonya is also a Crohn’s patient, diagnosed with the digestive disease in 1985 while she was in college. I’ll let her take it from here:
While fighting the physical pain of Crohn’s is tough, the mental aspect is even harder.
On January 3rd, 2018 my doctor put me on TPN (Total Parenteral Nutrition), which means I was fed through my veins. All of the nutrients I needed to survive were in an IV bag and pumped through my veins throughout the day. My doctor wanted to give my colon a rest so ulcers could heal. I endured this treatment for eight and half months. It was one of the most trying times of my life. No food, just water, broth and on occasion, coffee.
Despite my circumstances, I named my IV catheter “hopeful.” However, it took me a minute to adapt a positive inner attitude. You see, in public I put on a good, cheerful attitude. There were times when I wanted to crawl up into a big ball and shut out the world. The first few weeks of constantly wearing a backpack full of IV fluids were very hard. I did not like what I saw in the mirror. I was angry at my situation. It wasn’t until I visited a pediatric Crohn’s and Colitis Foundation support group that I changed my way of thinking. Seeing young people living with the digestive diseases, and going about their lives despite their circumstances, motivated me to do better.
I had to live my new normal to the best of my ability.
The mental game of TPN
Mentally, not eating real food was very, very challenging. Although I could not eat, I still cooked for my youngest child. The smells of the food made my mouth water, tempting me to taste what I know would make me sick. There were a few times I lived on the edge and took a sample. I paid for my mistakes—painful cramps and bloody diarrhea were my punishment.
After the first month on TPN, I knew I needed professional help if I were to survive. So, I sought the help of a therapist. I also prayed and meditated—a lot.
First, I needed a distraction for when I was tempted to eat. A friend taught me how to crochet. She even purchased the yarn, hooks and beginner books to get me going. I still cannot do a granny square, but I learned a new skill.
When times were bad and I wanted to give up, I would mentally go to my happy place—Turks and Caicos. Several years ago, I visited the Caribbean Islands. I imagined myself sitting on the pristine beaches, watching the waves crash.
The social impact
The loss of social invitations also did a number on me. Some of my friends did not want to hurt my feelings by eating in front of me, so they stopped including me. However, I did have one friend who went out of her way and found a restaurant that served the best broth in town. We sipped on broth and caught up with each other’s lives. This was one of the highlights.
I was determined not to let this situation get the best of me. Instead of going out to eat with friends, I invited friends to go for a walk. I walked with former coworkers, acquaintances and family members. The fresh air and good conversations did me a lot of good.
Taking steps to heal mentally and physically
Walking became my foundation. I was motivated to walk for another reason. Before I got sick, I signed up for several half marathons to raise money for the Crohn’s and Colitis Foundation. I finished the New Orleans half marathon in March, just three months into my treatment. I have never been so proud. I had to walk the race, but I finished. Several months later, I also completed the Twin Cities 10 mile race, and the Savannah half marathon.
My unexpected journey made me stronger mentally and physically. I am more outgoing and more self-assured than ever before. After all, you cannot be shy walking around with an IV bag strapped to your body.
I share my story to give others hope.
Sonya Goins is also a Crohn’s and Colitis Foundation Board Member/MN Dakota Chapter. You can find her blog at SonyaStrong.com. She also has a podcast on iTunes and GooglePlay entitled “Conversations about Crohn’s and Colitis.”