Weekend Long IBD Retreat Helped Me to Own My Crohn’s

Girls With Guts (GWG) kicked off its first-ever Newbie Retreat, a weekend-long event for new members of the organization that was held at Trout Lake in Stroudsburg, Pennsylvania, from June 7 to 9, 2019. The nonprofit founded by Jackie Zimmerman in 2013 is dedicated to supporting and empowering women with inflammatory bowel diseases (IBDs), like Crohn’s disease and ulcerative colitis, or ostomies, through the building of sisterhood and self-esteem.

For me, other than writing a blog post for GWG and partaking in closed group chats on Facebook, I hadn’t had too much exposure to GWG prior to the Newbie Retreat. So this weekend was not only my first time attending, it was also my first time meeting the board members and many women from all over the United States and Canada who, like myself, are living with a chronic condition. And while connecting with other newbies felt new and exciting, it also felt familial because we “got” each other. There was no need to explain anything about our conditions, medication, or dietary restrictions, which opened us up to genuine bonding experiences.

Throughout the weekend there were a number of fun-filled activities planned to create camaraderie amongst attendees. From disease-related breakout sessions on topics including parenting with an IBD and life with an ostomy to late-night campfire chats and team-building sports activities, it was a weekend full of laughter and fun, centered around butts, guts, ostomies, and all the taboo topics that are difficult for us to discuss with outsiders.

Below are four things I learned from the retreat that will help me to continue to live well with a chronic condition:

1. The Japanese Art of Kintsugi Helped Us to Heal

The first night we all got together for an early dinner in the cafeteria followed by icebreakers and kintsugi, the Japanese art of repairing broken pottery, in the boathouse. The Japanese believe that by repairing broken objects, we can make them whole again, beautiful again. The technique consists of joining together fragments of broken pottery and giving them a new, more refined appearance that is unique and beautiful.

With that in mind, we girls with guts smashed bowls with hammers and pieced them back together again with gold glue. In this process, we lost a few small pieces — and that was okay because, as we learned, that’s what happens in life. We break, we put ourselves back together again, and while we are never the same, we often become a better version of ourselves, wise beyond our years and more captivating than ever before. With each and every flare-up and surgery, this becomes more and more apparent. We might think we can’t reinvent ourselves, but we often can and do. And in that process, we unleash the most beautiful versions of ourselves, scarred yet still stunning.

2. Embracing Your True Self Helps You Connect With Others

Before the retreat started I was anxious about dealing with my daily medical rituals in front of others. During the campfire on the first night, I snuck away to the log cabin to begin my routine in private. Along the way I ran into Alicia Aiello, president of Girls With Guts, and shared my embarrassment about using my Cefaly device, a TENS (transcutaneous electrical nerve stimulation) machine that I stick to my forehead to treat and prevent migraines. Alicia told me there was nothing to be embarrassed about and encouraged me to join the group with the device. She helped me to own my illnesses, so I came out with it on. And all of the other women were fascinated with the device and had so many questions for me. Knowing that I could embrace myself with these women helped me feel less self-conscious and less like an outsider who always hides her illnesses behind closed doors.

As we roasted s’mores (some gluten-free) overlooking Trout Lake, we bonded over stories of how and when we were diagnosed, how we became involved with the organization, and where our lives have led us. I remember looking on in awe as others shared their stories of resiliency. Women shared how they overcame struggles in relationships, at work and school, and in child-rearing.

We laughed, we cried, we hugged, and most of all, we connected over all the gory details of living with an IBD.

3. Breakout Sessions Taught Us How to Live Well With a Chronic Condition

Saturday morning was packed with various breakout sessions that were meant to help us learn how to navigate the world with a chronic condition. Even though I have a permanent ostomy, I decided to attend the session on “Life With a J-Pouch.” I lived with a j-pouch for nearly six years before my permanent ileostomy so I thought I could help women who were considering a j-pouch or new to having one.

The thing is, although I share my story often in writing and on my blog, I don’t usually talk about it in person. I often fear that I won’t be accepted or that others may not want to hear about it since my story involves a subject even more taboo than having IBD: fistulizing disease.

But once I shared my j-pouch failure story with the group and the never-ending torture it put me through — between the pouchitis, the fistulae, the surgeries, and biologics — I was overwhelmed by the response of the women around me. They all were struggling with various aspects of j-pouch life, from pouchitis to an irritable j-pouch. But in the end we realized that we were thankful for having a j-pouch, because it gave us a chance at life again even if it is wasn’t a perfect solution or cure.

In the second session, I took part in the “Guilt and PTSD With IBD” breakout group. We discussed the psychosocial impact of living with a flawed digestive system, something that is neither our fault nor our doing, even though our natural instinct is to blame ourselves for it. I remember feeling so validated when we talked about what it felt like to need to be taken care of all the time when we used to live and work independently. And many of us cried as we lamented our bodies, the weight loss or gain that comes with IBD, and the medication used to treat it.

I brought up grieving over food I couldn’t eat anymore. We talked about ways to deal with avoidant restrictive food intake disorder, which is essentially PTSD around food. We expressed a deep desire to be better wives, girlfriends and moms as we carried around guilt that weighed more than a full ostomy bag. Some women shared that they felt guilty for not being able to have intercourse with their loving partners due to pelvic pain and chronic pain from IBD and fibromyalgia. I told the group that I walked around with the same shame until I found a solution in pelvic floor physical therapy.

4. High Ropes, Ziplining, and Archery Taught Us About Team-Building

After several activities where we got to know one another, our camaraderie was put to the test. We trekked out into the woods to participate in a high ropes course. As I was getting strapped into safety gear, I wondered what I was getting myself into. I dillydallied and allowed the more courageous girls with guts to go before me. Many of us had to talk each other into doing the high ropes course, but seeing others complete the course successfully gave me the courage to try.

When it was my turn, I climbed higher and higher into the treetops to the start of the course. At the top, the staff buckled my safety gear onto the ropes above me so that I could walk across without falling or injuring myself. I wanted to back out as I looked at the ground beneath me but I finally told myself, “if Crohn’s didn’t take my life, at least I’ll go down doing something fun!” I made it across the flimsy steps, the log, the tight-rope walking, and finally ziplining. And it felt like one of my greatest accomplishments to date.

Partaking in activities where I have zero control requires tremendous trust in myself and in others. This experience reminded me of how I’ve often felt like I was walking a tightrope with my Crohn’s and how I must have faith in my doctors and surgeons to bring my disease under control.

Thanks to this weekend long retreat, I now know there are others like myself fighting the same daily battles with IBD. And that feeling is enough to sustain me.

Whether it’s talking about stomas or poop or fistulae, I know that nothing at a GWG event is "TMI" or off-limits. I can be myself just the way I am. And that’s what makes GWG all that more beautiful. Even though we may be disease-ridden, GWG brings out the best in us and helps us to be more resilient.

So own your Crohn’s, own your IBD, and do everything you can to create a community in which you can love and are loved for who you are.

You can visit the Girls with Guts website to learn more about the organization, or about upcoming retreats.