When you are recovering from an illness or surgery, sometimes it can be easy to get ahead of yourself. You begin thinking about everything that needs to be done, both in the present and future, and it can become immensely overwhelming.
I found myself in this situation the other day. Just barely over 2 weeks post-op, I found myself thinking- worrying -ahead. Recovering, finishing grad school, graduating, finding a job- suddenly my mind was overwhelmed with worries and concerns about things that will not even happen for another 6-12 months. After a long talk with my mom to get my worries and concerns off my shoulders, I was reminded of something that is so important: right now, my job is to recover. To heal. To strengthen. To adjust. Weighing myself down with worries over things that 1) will not happen for many months and 2) that I have absolutely no control over right now is only hampering my healing process.
You see, worrying about something in the future does not change the outcome. It simply robs you of happiness and strength in the current moment. I want to embrace, enjoy, and learn from every single moment of my recovery, meaning that I do not have any time to worry about things to come in the future. If my year and a half of battling ulcerative colitis and its effects has taught me anything, it is that I may not always know what is going to happen next, but I can make the most out of every challenge that I am presented with.
I am a survivor. And I am thankful each and every day for my opportunity to recover, despite a few challenges along the way. Last Fall, the doctors were not sure if I was going to make it. This Fall, I am very much alive.
Live one day at a time. Life is a marathon, not a sprint.
Since returning home from the hospital on Monday, October 9th, I have strived to give my body plenty of rest and time to heal, while also working to strengthen it again through walking. I cannot even begin to describe how happy I am to be home and surrounded by my family and fur babies. I have always been a firm believer that animals (especially a warm, purring cat) help you to recover from anything twice as fast. Upon first returning home I was greeted at the door by my two kittens, Princess and Pumpkin. Tears were wildly streaming down my face as I hugged my fur babies. 10 days felt like forever without them.
I return to Johns Hopkins Hospital on Wednesday, October 25th, for my first follow-up appointment. At that appointment we are hoping to schedule the removal of my Hickman line and have my diet advanced to include a little more fiber, as I am currently on a low residue diet while my body adjusts to its new digestive system. Even on a low residue diet though, I have exercised extra caution when introducing new foods. Also at the appointment, I am hoping to receive the all-clear to begin physical therapy again.
Going into my 4th surgery in the condition I was in, I knew that my recovery would not be easy. But in addition to the physical challenges that I am facing throughout my recovery, I also have to face something that can be really difficult at times to comprehend completely.
I am now living with a permanent ileostomy.
My life has just been changed in a permanent way. There is nothing to fall back on and no reversal. When opting to go the route of a j-pouch last Fall, I knew that if the j-pouch failed, I would have to receive a permanent ileostomy. But at the time, I never anticipated that my j-pouch would need to be removed after only three months, leaving me almost as weak and malnourished as I was when I had active ulcerative colitis. Due to this, when it came to making the decision to remove my j-pouch, it made sense. I am not going to say it was easy, though, because making a decision at 23 years old that alters the way I live slightly for the rest of my life is the hardest thing I have ever done.
But I made the decision for my body, for my health in both the present and the future, and for my quality of life. I made the decision so that I can start on the road to full recovery and truly start living. I want to make the most of each and every single day.
I felt a sense of reassurance in my decision when the pathology report of my surgery came back this week, as well. The results showed severe, acute pouchitis, cryptitis, abscesses, and severe ulceration. Needless to say, my j-pouch was following the same course as my colon- and fast. Several more weeks would have resulted in a critical, life-threatening situation very similar to the one last Fall.
Although my j-pouch needed to be removed, I hate saying that my j-pouch "failed" because my surgeon did an amazing job at creating it and ensuring that it was more than ready to be connected in May. Nevertheless, the loss of my j-pouch is not anyone's fault. It was not a surgical error or lack or preparedness or my diet. The loss of my j-pouch was out of the control of everyone. Sometimes life presents us with opportunities and then takes them away to make room for even better ones.
I look forward to the coming weeks in my recovery and to continue to strengthen each day. Thank you so much to each and every person who has reached out to me or my family during this time. I read each message and comment and hear about each concerned phone call and I am overwhelmed with gratitude every single time. I feel incredibly lucky to be surrounded by family, friends, and a community that has been supporting my journey since day one. There have been many successes and challenges and tears and laughter and memories to last a lifetime along the way so far.
And guess what? We are only just beginning.
Pushing into a new week with a positive attitude, a smile, and hope for each new day.
Kristen