When I was in high school, a close uncle had a double amputation of his legs. He suffered from a rare situation that caused him to have the “arteries of a 90- year- old man” despite the fact he was only in his 30’s. His two young daughters were terrified of his new anatomy, as well as all of the changes in their lives that were necessary. The social worker from his rehabilitation center suggested having the girls name his stumps, giving them the ability to feel closer to their dad, hoping to ameliorate their fear. I do not remember both names, just Shapey, and remember wondering what was in Laurie’s and Shari’s minds as they chose that name. In fact, that time in my life was so impactful that I chose my first career, speech therapy, because of the time I spent visiting my uncle in rehab. I was incredibly impressed with the work I saw being done in physical, occupational and speech therapy, and knew that was my future.

All of these years later, I am in the position of recommending naming our stomas in order to become more comfortable with, and able to, embrace our new anatomy. In reality, according to the Food and Drug Administration, an ostomy is considered an amputation. That is because our stoma actually replaces the function of an organ that no longer functions, such as the colon or bladder.

As many of you know, I call my stoma Lily, since my mother was Lillian, and she gave me my first life. Lily has given me my second life, and my gratitude is enormous. Each time I meet a new ostomate, I am very aware that they may have a while, perhaps a long while, to go before they feel gratitude. But eventually, I believe they will be grateful. Our stomas save our lives!

The first phone call or visit I have with new ostomates allows me to listen to what has brought them to this new anatomy. All of us have the same thing in common…we are survivors, having been through so much. Whether it is an intestinal blockage, cancer of the colon or bladder, an accident, a perforation, a disease process such as Ulcerative Colitis or Crohn’s Disease, or pathological dysmotility, the outcome is pretty much the same. There must be an adjustment period, and I try my best to support them in that process. The key, I believe, is to point out how strong and determined they are to have survived, and they will use that determination to find their best lives in the future.

I also recommend joining an ostomy support group, since there are so many questions they will have, and to make the United Ostomy Associations of America website part of their recovery. I am always amazed at the amount of information available for the patient and their caregiver.

Lastly, I want to remind all who are adjusting to a new situation to have grace with themselves. We are much stronger than we ever thought possible, but even the mightiest of warriors needs to take time to assess their goals and the path to achieve them. And that may include reaching out to another. Please let me know if you need my support, from one thriver to another!

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