Our mission is to improve the quality of life for BIPOC who are affected by IBD, Digestive Disorders and associated Chronic Illnesses; through Community, Research, Education, and Advocacy.

Setting Healthy Boundaries For Self Care

By D'andre Hardy
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It is hard for me to remember how burned out I was when I received an emergency, temporary ileostomy 11 years ago at 24 years old. I was diagnosed with Crohn’s Colitis when I was 12 and the years of bouncing from provider to provider while not fully accepting what my body needed had finally taken its toll. I remember coming home and wishing I could disappear. I could not accept yet another change to my body. This was so unfair! My “invisible” illness was having very visible effects on my mind, body, and spirit.

I would over commit myself at work and to mask my limitations to avoid dealing with it. I would avoid events because I was not confident to go out with my ostomy and I didn’t want to be vulnerable with my friends. I eventually burned myself out to the point my body shutdown on me. I had to learn that the more I pushed to mask my illness, the more isolated and burned out I would be. I knew I had to figure out how to accept my reality.

It took me 5 years to accept my new normal with an ileostomy and achieve medical remission for Crohn’s Disease and Hidradenitis Supperativa. In 2020, I made the decision to make the ileostomy permanent and have my colon removed. I still have good and bad days, but overall, my health has improved. Being honest about what my body needs is a major key in my self-care journey. I started being honest with myself, my family and my providers.

I went to a healing coach to learn how to prioritize myself and set healthy boundaries. Before this process I thought self-care was pedicures and facials. I learned that real self-care is work.

Here are some tips that work for me:

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  • Listen to my body: I make and keep my appointments no matter what’s going on. I also reserve 1 weekend a month to do nothing and recharge. Advocate for myself: I had to learn to advocate for myself early because managing a chronic illness was new for me and the adults in my life. It got harder in early adulthood when I went to appointments by myself with new providers. I learned the importance of finding providers who will take the time to understand my unique story and believe my experiences.
  • Move: I feel better when I’m active. I let having an ostomy stop me from exercising due to fear of leaks and causing pain. I’ve found what works for me and I commit to taking a walk, going to my boxing class or doing some form of movement multiple times a week.
  • Stop Hiding Embrace Community: I realized I started suppressing my style when I was having a hard time accepting having an ostomy. I love bright colors but I started wearing mostly black and dark colors. Now, I’ve found my new personal style through trial and error. I opt for things that are comfortable but in style and flatter my body type with the ostomy. I’m intentional about finding outfits that make me feel beautiful!
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  • Find Community: Having an ostomy is a big change but it doesn’t have to be the end of the world. I encourage anyone struggling with their diagnosis to find a community that understands what you’re going through. OstoChat has been a great community for me to vent and support other ostomates.
  • Leverage My Strengths: I spent a lot of time dwelling on what I couldn’t do with my diagnosis and ostomy placement. Dwelling on my limitations contributed to low self-esteem. I had to reframe how I look at my ability and leverage what I can do. I surround myself with people who I can lean on for support with what I need help with while appreciating who I am.

Give yourself grace in this journey,

D’andre

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