Celebrating my first year as an ostomate

Today is the one-year anniversary of my ileostomy surgery. I thought about climbing a mountain to honor the 0ccasion, but decided to celebrate by enjoying a normal day. After all, as much as I love getting outside to challenge myself, it was the simple everyday things in life such as being able to go to work, eating a regular diet, and hanging out with friends and loved ones that I most longed to do when I was sick and then recovering from surgery. So, today I woke up and enjoyed my drive up to the park where I work. On the way, I could see the freshly snow-dusted mountains of the Continental Divide in the distance and was grateful for such a spectacular commute. At my job, I contentedly worked on an kid’s owl night hike that I will be presenting soon. After work, Doug and I had dinner with some friends. We joked that we should have a party with stoma-shaped cookies and a commemorative all-liquid dinner, but we opted for pizza and beers instead. It was a wonderful day, and it was the perfect way to top off my challenging yet life-renewing first year with my ostomy.

Enjoying pizza and beer on the 1-year anniversary of my surgery.

Last year, the day of my surgery was full of much different experiences, but was also a celebration of sorts. I remember waking up in the morning and breathing a huge sigh of relief. As we drove to the hospital at 5:15 a.m., I was scared and nervous, but also felt a profound sense of peace as I rested my head against the window and gazed up at the stars, pondering what my life without the sickness and pain of ulcerative colitis was going to be like. I checked into the hospital and made my way to pre-op, finally feeling secure that nothing was going to get in the way of my surgery.

You see, making it to that day was a big deal to me. Things must be pretty bad for one to be excited to have their colon removed, but I was at that point. I had left the hospital a month earlier in a remission thanks to a single infusion of Remicade. However, I could take no more infusions of the drug due to bad side effects and had scheduled a date for my surgery. While I was waiting for that day to arrive, my health felt very tenuous. Though I was regaining strength every day, I was terrified that I might slip back into a severe flare that could prevent my surgery from going forward. Then what? With Remicade off the table, how would I ever end another flare-up? Humira? What if that caused me excruciating joint pain too? I was also tapering off Prednisone in preparation for surgery. Previously, lowering that dosage tended to cause a return of symptoms. What if I got sick again and nothing could control it, and I went back into a situation of needing emergency surgery in a weakened and sick state? I tried not to think about it, but every time I went to the bathroom, I would take a deep breath and look in the toilet praying that there would be no blood. If I had even slight diarrhea, I started to panic. The month between leaving the hospital after my severe flare and undergoing surgery was one of the scariest times in my life.

But somehow I made it through that and so many other things this year. It seems crazy for life to feel so natural with my ostomy when just twelve months ago it was a complete unknown. In that short time, I went from barely wanting to talk about my disease, even with my best friends, to sharing my story with the world. It makes me wonder: What will the next years bring?

An Ostomy Outdoors reader left a thought-provoking comment a few days ago about not wanting to change a thing in her journey with surgeries and IBD. This is something I have often reflected on myself. If I could, would I erase this year and go back to living the way I did before that severe flare and the resulting surgery? If I just think about the obvious things, such as how much abdominal pain and fatigue I had even in my good days of  UC “remission,” not to mention when I was in a bad flare, the answer would be an easy no way would I ever want to go back to that. But there would be reasons for that same answer beyond not wanting to feel sick. I wouldn’t want to go back because this whole experience has helped me grow as a person. It allowed me to see strengths I didn’t realize I had and taught me big lessons about dealing with uncertainty and living in the moment. It has made me more grateful for my friends and family and my time with them. The experience completely opened my eyes to the amount of care and compassion many doctors and nurses really do give to their patients. I will never take this for granted again. Going though the hard times has also made me appreciative of the small things in life, and I constantly notice beautiful moments all around me that I think I missed before. And lastly, having an ostomy has introduced me to an amazing community of people and many new friends who have been or are going through similar things. So no, I wouldn’t trade it in. This day and this year are truly something to celebrate.

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