“That’s the thing that is predictable about PseudoObstruction, that it is unpredictable” Dr. Majorie Arca
Unpredictable is the predictable sometimes. It keeps life interesting and never “mild” or “boring”. It means new adventures and journeys everyday. However it can also mean another day of being told news you never wanted to hear. News that creates chills down your back.
On Thursday the 11th of May I had a l long day full of clinic appointments at Children’s Hospital of Wisconsin. I had a consult with my surgeon for my operation the following week, an appointment with infectious disease, and an appointment with my dietitian and nutritional/intestinal failure doctor. It was an average day at the hospital. I waddled into my surgery appointment and sat down with a sigh of relief, happy to be able to rest my swollen belly from the movements of walking. The look on the nurses face told me that this situation I was in with my ostomy having a partial obstruction was not good… however, I dismissed it. I had hope this was just a small bump in the road. After all, I had my first choir concert since my freshman year that evening.
Once my surgeon, Dr. Arca, came in things changed rapidly. She could not dilate my ileostomy at all. I writhed in pain as she examined it in efforts to help me. She then realized, to our shock, it had become totally obstructed. Completely and absolutely obstructed. Nothing was going to move through it. She looked at my mom and I and told us the news we did not want to hear: “I need to operate today.” And from that moment she said those words everything changed.
I was wheeled up to Pre-Op and arrived to a team of five people waiting for me. It was a whirlwind of people working to get me back to the OR so my surgeon could save my ileostomy. We cross matched my blood for my transfusion, worked on my central line, ran labs, did a urine sample, changed into a gown, and in less than an hour I was being wheeled back off to the OR.
It says more than a lot when you trust your surgeon with your life. When being asked about consent, my mom and I said without hesitation that she could do whatever she had to do. Just please fix this issue. I needed an ileostomy that worked.. I needed it desparately. I was wheeled bak intothe OR and looked around at the people hurrying around. I looked at the sterile table full of scaples, scissors, blades, gauze, and more devices that I did not even know existed. It was a rapid sequence anesthesia process. I braced myself as they placed their hands on my throat to prevent me from aspirating. They pumped my lungs full of oxygen, explaining that this then gives them three minutes of being able to intbuate me without air. The anxiety consumed me as they pushed the medications rapidly, needing to be able to operate as soon as possible. I felt the tingles and rush of medications hit me and I fell asleep telling them that I just needed them to fix me. And my eyes closed, and I surrendered my body for them to heal.
When I woke up I was in much more pain than I had expected I would be in. I had to ask for more pain medications as the pain was too high. I heard them saying Dr. Arca asked for a PCA pump for me and then I realized this surgery was bigger than just dilating my ileostomy. I knew then she had to do more. The nurses were so compassionate as usual and covered me in a blanket, I smiled and felt a sense of calm looking at its peace sign across it… “The peace within the fight”… Once they called my mom back I finally felt calm again knowing she was by my side.
Once I was transferred into my room I was able to gather a sense of my surroundings. I noticed the familiar looks of my hospital room. I saw the blur of doctors, fellows, residents, medical students, nurses, and more all surrouding me and coming in and out of the room. I later learned the details of my three hour surgery. When my doctor went in she discovered my small intestine was collapsed onto itself, folded like ribbon candy. It was more than obstructed and nothing was going to get through. My surgeon had to completely disconnect my ileostomy and create a new one within the same sight. The healing process I went through with my first ileostomy had begun once again.
The days following surgery were very challenging and rough. I developed a Post Operative Ileus (POI) that laid me out. It meant my intestines and stomach were completely and totally shut down. I dealt with having more output from my G tube that was bilious compared to the output of my ileostomy. The nausea, pain, and drainage consumed me. My body had a very hard time processing the anesthetic so I spent days trying to stand up without loosing my hearing and blacking out. My heart rate changed from its normal rate to the low 40’s, with almost constant bradycardia. I was very sick for quite a while. It was yet another rollercoaster.
We met with one of my doctors and made the painful choice to put me back on full TPN and lipids as I was malnourished. We worked on cycling me down from 24 hour TPN to 12 hour TPN. We realized I had mucocutaneous separation again, and began daily ileostomy appliance changes. Each day was full of the goal of getting better. Slowly but surely I was able to walk to the bathroom, and then to my door, and then down the hall a bit. Soon things slowly turned around as they always do… even though this time I was drained of all energy.
We soon turned the corner. The sun came out again. My laughter came back. My heart rate rose. We tried feeds but watched in dismay as they failed again, my body too weak from surgery still. Soon I was able to get rid of my PCA, and took a lap around the whole floor without blacking out. I began to heal again. To piece everything back together.
After eight days we were able to be discharged home. I continued to deal with my POI and work on establishing a more regular sleeping pattern. I fell in love with being home and being consumed by my family and friends. Home is the best place to be… its where I started my healing process again. The next day I rallied myself together and went to school. Being able to be in the hallways again made me feel accomplished… all of this suffering and pain is for such a wonderful reason: life.
This journey is unpredictable. It is crazy. It is hard. It is painful. It is unbearable. Yet it also is beautiful. It if full of laughter, teamwork, love, kindness, endurance, gratitude, empathy… it is full of everything good in life. It is predictable in the sense I know no matter what happens my family, friends, and I will get through it. And we did, we did it again.
All of my love,