I don’t for a minute regret having ostomy surgery, but I wish I’d known a little more before I headed to the hospital. Keep reading for my list, or click the button below to watch my video about what I wish I’d known before ostomy surgery:
You’re making the right decision
I remembering being told I could have elective ostomy surgery within the next few months or that if I chose to keep my colon, it would probably be emergency surgery within the year. I was so sick and in a lot of pain, but there were so many unknowns about surgery. I decided it was best to remove my colon in a non-emergent way. I had a lot of worries about my decision and had a lot of “what ifs” in my mind. Six years after surgery, I believe I did make the best decision. Although life will never be the same as before surgery, the quality of my life has dramatically improved!
You will feel better, but it’s not a cure
I rationally knew that surgery was not a cure for ulcerative colitis, but I think part of me was expecting to have no symptoms of my autoimmune disease after my total colectomy. The truth is, I still get some extra intestinal-manifestations of my illness, like arthritic pain, canker sores, and fevers. Compared to my UC symptoms prior to surgery, these feel quite mild, but it is easy to tell my illness is still sometimes active.
It is different, but it is not devastating
Living with an ostomy is different than anything you’ve experienced, but you quickly learn that different isn’t bad. Sure, you miss some things about having a colon, like the ease of staying hydrated, but having an ostomy is completely doable and the longer you have it, the more living with an ostomy turns into your “new normal.”
It’s okay to be scared and sad, but you didn’t “lose”
I know sometimes people feel like they have to be brave, but the process of getting an ostomy can be scary, and there can be some sadness surrounding the change in lifestyle, but acknowledge those feelings, and then try to accept them while also learning all the beautiful things about having an ostomy too. I know it can feel as though you “lost” to your illness when it was time to get a total colectomy, but it was never a competition. My life certainly doesn’t feel like a “loss” six years post-op, and that feels like a victory.
You will be able to do all of the things you enjoy
Living with an ostomy has not taken anything that I hold dear to my heart away from me. During recovery you’ll have to take it slow, but as soon as you begin to come out of recover, you’ll be able to be active. Seven months post-op, I was able to hike, run, climb, swim, camp, and was even inspired to try new things like advocate, speak, and travel.
After the surgery, you will find a way to make meaning out of these experiences
Through the process of illness, pain, and surgery, you will find within you a growth that allows you to find meaningful ways to utilize the gifts that illness and surgery has given you. It is easier to practice gratitude when feeling well, it allows you to be empathic to people who are hurting, it teaches self-compassion, and has shown you how resilient the human spirit can be. I believe Rumi said it best “The wound is the place where the light enters you.”
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Can you tell me of any medication or pills I can take that eliminate or lessen odor? It seems to be worse in the mornings. I am going on vacation with friends and it can be very embarrassing.
