By Wendy Lyman
What is “Gastrodiversity”?
I just made up a new word, which I believe is allowed in the continuing evolution of English. If Google can define neurodiversity as “the range of differences in individual brain function and behavioral traits, regarded as part of normal variation in the human population (used especially in the context of autistic spectrum disorders)”, then I define “gastrodiversity” as a range of gastrointestinal complications and diseases, often observed in conjunction with autistic spectrum disorders.
Through the Different Brains community, I have found great resources and perspectives that encourage me. I have already written a few blog posts here about the adventures of parenting my beloved son, but what I haven’t discussed is the co-existing condition that kicked in for him in childhood: ulcerative colitis. Throughout my journey in the world of ASD, I learned about the high incidence of co-occurring inflammatory bowel diseases (IBD), specifically ulcerative colitis (UC) and Crohn’s disease. However, unlike my discovery of the Different Brains community, I had not found an especially helpful community for parenting an IBD-afflicted child back when my son was first diagnosed.
Now I have. But before I tell you about that, a little back story…
My Son’s Journey With UC
My son was diagnosed with UC at age 9, but his situation did not reach a life-threatening state until 2011, which would be the start of a decline that would lead him back into the hospital in 2012, which led to three surgeries necessary to save his life and resulted in a full colectomy with an internal J-pouch. In total, he spent 81 days in the hospital from December 2011 to July 2012.
During the time that I lived in the children’s hospital, so much of my life was put on hold. As a parent, I desperately craved information, and questions tormented my attempts to sleep. I wanted to know what others in my parenting situation were doing or had done. I wanted to talk with those who understood what I was experiencing and feeling without being pitied. I wanted to know about predicted scientific outcomes for the surgery my son was undertaking. I wanted to journal about my experience in one organized place, to create a history of what was happening, lest my memory fail me when I needed to retrieve details for future medical visits with my son. I wanted parental advice on how to productively manage my professional and family life beyond the hospital. I wanted someone in the know to reassure me that my family and I would get through this intact, not just physically but also mentally. I wanted a community to call my own as the parent who was suffering in a different way from my son but suffering nonetheless.
Here I am ten years later in 2022. My son lives a mostly healthy life with his J-pouch still appearing to do its job, but there are issues. Since he is 23 years old, I have had to step back and let him tackle those issues independently. Still, he reaches out to me as a caregiver and partner on this life journey of his because his ASD limits his ability to fully separate from needing his mother. He tries to be an independent adult, but his choices and behaviors often put his health at risk; I am often stumped as to what to say or recommend.
Now I have found IBDLyfe, and at the risk of sounding like an advertisement, I am excited and finally optimistic, not only for my son’s potential access to information and resources but also for my own. This patient-driven platform offers:
- Find a Friend: peer-to-peer connectivity, building communities that also build insight and promote mentorship
- Resources: clinical, curated, and validated
- Webinars: panel discussions with everyday experts like the patients and care partners that comprise the IBDLyfe platform
- Health Tracker (my favorite feature): patients and care partners can note biometric data and keep records in order to feel stronger and more confident when meeting with medical providers
- Discussion Forum: a safe place that includes moderation and the promise of no data leaks
- Blogs: motivational stories that help others open up too
- Partnerships: plans to partner with institutions to conduct real clinical research and offer seminars co-hosted with academic institutions
- Innovation Challenges: industry help to source and recruit patients for speeches, workshops, challenges, and market research, meaning that patients will be able to make money using their own expertise in their disease
In full disclosure, I joined the Lyfebulb team last year as the IBD Community Manager, and it is a passion project for me, as is writing for Different Brains. If a platform like IBDLyfe had existed ten years ago, I believe some of my family’s circumstances would have come out differently. Although I could not prevent the personal casualties of 2012, hopefully I can help present and future caregivers along their IBD journey, encouraging their contribution to this community that has so much to offer … before it is too late. And that can only be better for the patients we love so dearly. After all, my mantra has always been Timing Is Everything in Life, and now is the time for the neurodiverse community to also benefit from what the IBD community has to offer.
I hope you will join us because we would love your input. IBDLyfe.com
Wendy Lyman is the mother of two children: an adult son with a slew of acronym diagnoses, including ASD, OCD, GAD, and UC (ulcerative colitis), as well as a neurotypical adult daughter who grew up in the shadow of her older brother. Wendy is also an ESL professor and writer of six published novels (as Wendy Ramer). A Floridian by birth and upbringing, Wendy now lives in Virginia. You can find more out more about her on LinkedIn and Amazon.