During my last update, I was preparing for a surgery. Now, I am writing to you almost a week post-op from the comfort of my bed recovering. On Monday, August 5, I underwent my seventh surgery at the Johns Hopkins Hospital in Baltimore, Maryland. My surgery was a gracilis muscle free flap surgery to close a non-healing wound from my j-pouch removal surgery in September 2017 - don't worry, I'll explain!
During surgery, my surgeon cut the gracilis muscle from my left inner thigh and rerouted it under the skin into the cavity that my non-healing wound had created and was housing abscesses and infection within. I have a large (6-7 inch) incision on my leg, as well as an incision where the initial wound was (because they had to clean it out before placing the muscle inside). I also have two not-so-lovely drains in my leg and pelvic area. For 24 hours after surgery, I was not allowed to walk or even roll on my side; during this time, it is especially critical to protect the muscle and preserve the location to avoid the flap dying. In the weeks moving forward, I am not allowed to sit straight up at 90 degrees, as this can still cause damage to the newly-placed muscle. As you can imagine, this makes driving and sitting in general quite the challenge.
I can live a completely normal life without the gracilis muscle in my leg from walking to running marathons, I just simply cannot be a ballerina because the gracilis muscle is relied on in ballet (the words of my surgeon).
To be honest, this has been one of my most difficult surgeries despite going in much healthier than any of my previous surgeries. Having both my leg and pelvic area both very compromised leaves me very weak and forces me to put a lot of pressure on other areas of my body like my right leg and core. Walking is very painful, though it does improve each day. At this point, I cannot completely straighten or bend my leg - which I am not supposed to anyways. Currently, I am limping around on crutches for support and to help with my balance and each day, I undergo about 45 minutes of dressing changes, drain emptying, and rewrapping of my leg.
Physically, this has all been very taxing on my body, but it has also been mentally and emotionally challenging. Despite battling my wound, prior to surgery I was working, running, and finally starting to feel strong. This surgery has undoubtedly set me back months, which is disheartening, but I try to remind myself that this is all temporary. I know that when the time is right, it is going to feel so rewarding to walk without crutches and eventually run again. I know better days are ahead.
The last three years have been housed some of the highest highs and lowest lows for me and my family as we battle this disease. There have been so many moments when it has truly felt like our entire world is crashing in, but each time, we have emerged from the darkness even stronger. I have to equate some of this strength to the amazing support system that we have from friends, family, and even complete strangers. It is because of you that we are motivated to keep going, despite the pain. It is because of you that we do not feel alone in this journey. I thank each and every person who has been part of this journey with us from the bottom of my heart. Words will never fully describe how grateful I am for your support.
Also, while I am expressing my gratitude, I owe a special thank you to the amazing team behind DripDrop ORS. Not only has DripDrop saved me from countless ER visits for dehydration and made sure that I enter surgery well-hydrated, the individuals behind DropDrop have been incredibly kind and supportive of my journey. The heart of the company truly shows. So, thank you, DripDrop, for supporting me in all areas of my life.
I have a long, challenging road ahead of me, but if the last three years have taught me anything, it's that I can overcome anything.