Guest Post From a Parent for IBS Awareness Month: An Emotional Journey
IBS Impact is pleased to welcome another guest poster for IBS Awareness Month. Kathryn lives in the United States with her husband and two sons. She has a bachelor’s of science degree in psychology which included research studies in child development and group therapy. In the years since her son’s IBS diagnosis, she has invested many hours learning about the disorder. When not preparing her sons to “leave the nest,” she volunteers on the IBS Support (official) Facebook page trying to advance IBS understanding. We thank her for her time and for her articulate, frank, and poignant personal story.
Your child has been diagnosed with IBS, and you are probably poring through handouts, internet searches, and support groups trying to figure out what is happening to your baby. This article is meant to be a small time-out to recognize a parent’s experience. This is your child’s disorder, and it’s not about you for sure, but like many parents, you are probably the family nurse, cook, counselor, social director, and problem solver. This winding process is likely to be led by you, and you will be an integral part of the team supporting your child, navigating doctor’s visits, and finding interventions. You will learn a lot in the coming months and years about strategies, medicines, symptoms, triggers, but this article is simply here to say you are not alone, I’ve been there, and I have experienced some of what you are or will be feeling. For me, it’s been an emotional journey!
My active, optimistic, adventurous son was diagnosed at 14, in the late winter of 8th grade (USA). He approached me in the middle of swim team practice to tell me he was feeling nauseous and needed to go home. He also had abdominal pain and exhaustion. I was unconcerned and confident he would be fine by that weekend’s swim meet. A week later, I was concerned but admittedly more inconvenienced… about him missing classes, training, Boy Scout merit badge meetings; falling behind in homework; needing me to stop what I was doing to pick him up from school. A month later, I was terrified. How could this nausea, his primary and most debilitating symptom, still be this bad? I allowed my imagination to conjure the worst… either colon cancer or a brain tumor causing this unwavering nausea. I was so worried and scared that I couldn’t eat or sleep. I cried a lot, and of course tried my best to hide all of this from him because I didn’t want him to know how very bad I thought this might be. His pediatrician assured me that his tests were normal and that a brain tumor would present with different symptoms. He recommended some over the counter medications to alleviate symptoms. I felt reassured when talking with the doctor but fearful again when the medications relieved some symptoms, but the nausea remained. I felt desperate and made deals in my mind with God, “please let him be well in the morning and I promise I’ll …” I remember impatiently waiting for a return call from the doctor on a Friday to understand next steps. Near the end of the day, I finally called again but the doctor had left for the weekend and wasn’t expected back. All the emotions I had been trying to contain tumbled out in that phone call in a very angry tear-filled meltdown. What was wrong with my son and why was I the only one concerned that we couldn’t figure it out?!? The nurse must have realized I was completely untethered and tracked down the doctor. He called me that night, assured me he wanted to solve it, and recommended a pediatric gastroenterologist. The appointment was weeks away, but I was feeling validated and there was a glimmer of hope.
The pediatric GI was wonderful. She listened to both my son and me, asked lots of questions, and happily announced that based on symptoms and medical history, she was confident this was irritable bowel syndrome. She reassured that this meant no disease, no inflammation, no damage, no progressive deterioration. I was overjoyed and overcome with relief. We had a diagnosis and a treatment plan with medications that she commonly used to treat IBS. These medications had difficult side effects that continued to cause missed school and social events, but by late spring, my son was symptom-free, and we were joyous. Always the planner, I asked the GI, “What if it comes back?” She seemed taken aback by my lack of optimism and said there was no reason to think the worst. Victory was declared, the medications were weaned, and my outgoing son rejoined his active life, including starting a new high school.
Unfortunately, her answer left me unprepared when, almost exactly a year from that first day of symptoms, it came back. I felt gutted. The pediatric GI believed the solution was clear and, working with her nurse, we implemented the same regimen of medications. The side effects seemed worse this time and, combined with the nausea, discomfort, and disappointment he was experiencing, my son spent a lot of late winter and spring in bed, missing most of the school, athletic, and social activities that he previously loved. Of course I was heartbroken, but worse than that, I felt helpless and even guilty. I am a caregiver and problem solver, and I was stumped. What were we missing? Was I making him sicker with a food I was providing? I read everything I could find on the internet and unfortunately tried many “remedies” that probably exacerbated his nausea. In our few lighter moments, he would find me on my computer and ask if something new had been added to the internet for me to read, because surely I had read the whole thing by now.
With the start of spring break, we set the goal to solve this nightmare before classes resumed. There were more tests with more normal results, and I was frustrated and fearful again. I was angry with God for allowing this into his life and with the GI for not having new suggestions. How did I get the doctor to acknowledge that we needed a different game plan? Surely he wasn’t expected to live this way forever? I frequently called the GI nurse with updates that his condition was worsening and requests to adjust the plan, and she instructed me to stay the course or increase the dosages. At the end of the two-week spring break, he was in fact worse. Queue the 2nd emotional meltdown on a phone call with a nurse. But it got her attention! “You did everything you were told and it’s worse?” It finally dawned on her that even though this common combination of medications had helped him a year before, this time the side effects were actually increasing his symptoms. I was fuming that my previous attempts to explain had been rebuffed, and we had wasted precious time. With some quick changes to his treatment plan, he felt great for a couple days, and then the nausea and discomfort were back with no new answers from the GI nurse and no response from the GI. We felt defeated and lonely. Teachers, friends, coaches, family didn’t understand what was happening, and we didn’t know what to tell them.
With the help of his pediatrician, we found a new pediatric GI and eagerly awaited that appointment. My son did his best to push through his symptoms to attend his harder classes. I joined an IBS support group on Facebook and discovered some new ideas to try. Thankfully, this was an evidence-based page, and I began to trust the recommendations. Yes, I had discovered new material to read, including reliable information about what IBS is and isn’t. I learned about the FODMAP diet and other food triggers, and I adapted my meal planning. That summer, he had some good days and some bad days. The good days were always clouded by the dread that the bad days would return. The unpredictability weighed heavily on us both. Swim meets and vacation travel plans were frequently disrupted, often the day before or even half way through. The helplessness was overwhelming. I still wanted to fix this so badly and was struggling to accept that I had no control. The new pediatric GI confirmed his IBS diagnosis and committed to team with us to find ways to alleviate symptoms. Her practice included an online patient portal which allowed easier and more efficient communication so we could make quick adaptations to treatment plans. She offered new recommendations, including cognitive behavioral therapy with someone that specialized in functional GI disorders. As I read through the material on CBT, I felt defiant. I didn’t want to learn to live with IBS or to learn to “manage” symptoms, I wanted this gone. Anything short of a full recovery felt like giving up. This wasn’t fair for him and it wasn’t fair for me. This is not how I wanted him to live, and my own mental and physical health was being impacted by my own stress of not being able to help him and by my worry about his future. My determination to solve this had been revitalized. I laid out the recommendations the doctor had provided, and my son selected the ones he felt ready to try. He committed to being more diligent about diet changes and agreed to try CBT. He identified that wheat seems to worsen symptoms, and he learned about the impact stress has on the nervous system. He discovered that he has a relatively healthy psychological outlook to managing normal life stress, but that his body simply has a low tolerance for its physical impact. He learned some tools to help calm his nervous system, and I stole a few to help with my own, like diaphragmatic breathing!
While he was learning tips to manage symptoms, I finally began my own effort to care for myself. I had to acknowledge and accept that other than helping my son learn about his disorder, there is nothing I can do to change or control it. On a broader spectrum, that is true not just for IBS but for life in general. I was a hands-on mom and needed to let go of many parts of my children’s lives. My son’s IBS forced me to face that we did indeed need to learn to live with this, I needed to empower him to self-manage, and I recognized my role as emotional support but not fixer of all things. For me, turning to my religious faith helped me to recalibrate my priorities and “place” in the world, to accept there are things out of my control, to be optimistic and grateful on good days, and to be flexible and hopeful on bad days. No one is guaranteed a certain life, and illnesses aren’t dealt out based on good or bad behavior. The goal is to live a good life, but no one gets to choose what that life will look like. When faced with an illness or other unexpected turn of events, all we can do is educate ourselves, make appropriate adaptations, and continue to explore moments that bring joy. This refreshed outlook has helped me not only accept IBS coming into our lives, but other new, unwanted challenges as well. Now instead of managing details of my two sons’ lives, I’m trying to pass along this message of resilience.
Today, my son is much better, physically and emotionally. Rather than months of constant nausea, it’s measured in hours or days. He makes the best of his good days, optimizing his time with school, work, and friends. On his bad days, he stays confident that it will pass and eases symptoms with some reliable remedies. He recently took his SAT (college entrance exam), and we worked together to avoid his food triggers and set aside a calm schedule for several days leading up to it. He completed the test with no problems, but then felt ill the next day, as expected. It’s not always that controllable or predictable, but by better understanding what works for him, he has been able to make it a much smaller part of his life. I continue to follow research in hopes of helping him find new management tools, and I try to raise IBS awareness. I now volunteer as a moderator on that Facebook support group that I stumbled upon two years ago. Sharing what I have learned is a constructive activity that helps to combat my feeling of helplessness, allowing me to feel like I’m making a difference.
Sharing my experience with a focus on emotions wasn’t meant to be self-indulgent. My story is a sidebar article to the feature story that belongs to my son, but it’s the part I know. By highlighting each emotion, I hope you could connect with at least one or two and feel understood. I also hope it sheds light on another layer of this disorder’s impact, one that’s easily overlooked in the scramble toward diagnosis and successful intervention. The impact of IBS is as broad and complicated as its symptoms and treatments, for both the individuals diagnosed and the people who love them.