In 2001, the year I turned 27 years old, I started my first job out of graduate school with the Washtenaw County Prosecuting Attorney's Office. Bob already worked for the county in Human Resources, so it was nice to be part of the same organization. I was hired to start a youth mentoring program for the kids coming through the Juvenile Diversion and Restoration program. The program would be a part of a greater mentoring initiative through the Michigan Governor's Office. I remember showing up for my first day and being shown my office. It was my first private office, which I was excited about, but all I had to get started was some files and a volunteer training PowerPoint. It was a great experience learning to grow a program from scratch and market it throughout the community. I even mentored a young girl myself, who was in 8th grade when I met her, and who I still keep in touch with today. Never underestimate the impact you can make on the life of any child with the gift of your time and love.
When I think back on my over 14 years of battling health issues, the details and chronology is not super clear. The feelings it left behind are strong, but the actual account of what happened and in what order is sketchy to me. I dislike filling out medical forms for multiple reasons, but the question about past surgeries and the two or three lines they leave to answer it is always a treat. I don't even bother trying to answer it and usually say 20+ surgeries starting in June 2001 (averaged about 3 a year). I just lost count after a while. Part of this journey for me is being able to make peace with that time of my life. I can't "say goodbye" or "let it go" because it will always be a part of who I am and a part of my story. But it is time to make peace with it by sharing it and knowing that I would not be me without having experienced it.
This is a picture of me after being on about 80mg of Prednisone over an extended period of time. I have discarded most of the pictures from this time of my life because it is so painful for me to look at them. This is what I looked like for a majority of the 2-3 years leading up to June 2001 and my first surgery. It's time to own this time of my life and just talk about it. Predisone is the only thing that gave me any relief from my Crohn's Disease, but it doesn't really help with symptoms, it just masks them. I was on and off of it for many years as my doctors worked so hard to keep my symptoms under control. Anyone who has taken this drug at all understands - increased appetite, swelling of face and body, insomnia. Lots of fun! As an added bonus, I now have significant bone loss from it. I remember when we lived with my parents a month before we moved to Michigan and I just stayed up a lot of nights scrapbooking on the dining room table. It made me feel uncomfortable both inside and out and my family and I reached a point when other options had to be explored.
After meeting with several surgeons in Southeast Michigan, Bob and I found Dr. J. I clearly remember meeting with him in his office as he outlined our three surgical options. I knew about illeostomies since my dad had one and the thought of it just terrified me. So, we decided to try the least invasive option, which included a removal of my entire large intestine and reconnecting everything inside. The surgery was scheduled for June 2001. I can look back now and wonder, if I had gone ahead and had a permanent illeostomy put in, could I have avoided all of those years of pain? Maybe. But, I can't look back and say "what if" because I think my life is exactly where it should be now.
In early June 2001, I went in the hospital to have the surgery done. Outside of having my wisdom teeth removed, this was my first surgery. If they removed the sick part of me, life should just get better. The surgery went well, and after a couple of days in the hospital, I was able to go home. My parents and Bob's parents were there, and my brother Mike and wife Cynthia flew up and surprised me after I was in recovery. I was feeling good. While this was happening, we had other things going on in our family. My "Graney" (dad's mom) was in failing health and declining quickly. She ended up passing away after I got home from the hospital. In addition, Bob's Aunt Virginia (mom's sister) passed away around the same time (again, the sequence of events is failing me). Bob flew to Maryland to be with his family for her funeral. I really wanted to be with him. I was determined to get down to Florida for my Graney's funeral, my last living grandparent, despite some pain I was having in my abdomen. I talked with Dr. J and he thought it would be fine as long as the pain went away or didn't get worse. I was so naive. I was determined to go even though everyone around me was hesitant. Bob made it back from Maryland and we flew down with my mom to join the rest of my family.
It was a really hard month already, but the pain was getting worse. I was almost afraid to say anything or admit how bad it was really getting. It was a very sharp, intense pain - still the worst physical pain I have ever felt to date. I had to hold on to the wall in the hotel to walk and just did my best to get through those four days. Looking back, I wonder why I didn't go to a doctor sooner. I was trying to get through the funeral and get back to Michigan. My mom flew back to Michigan with Bob and I so she could make sure I was ok. I was in the worst pain of my life on that airplane, and with my luck, I had a young kid behind me kicking my seat and playing a travel version of Hungry Hungry Hippo. I vow to never buy that horrible game for anyone else and will not be happy if it is gifted to my daughter. It's somewhat funny to think about now, but I can promise you it was a terrible time then. My mom was a true "mama bear" as it took a lot for me to get her to stay in her seat and not rip the game out of the kids hands.
We all knew something was wrong, but I was hoping I would do better just getting home and resting. As we were leaving the airport, I had to pull over and get sick on the side of the road. Bob immediately took me back to the hospital. Dr. J told me to go straight to the emergency room and he would try and reduce my wait time. I don't remember how long we waited, but I know it was at least a couple of hours and I had a very hard time sitting still due to all the pain. Bob and my mom both kept pushing the staff to get me a room, but it just took a long time. It was getting to be late at night. Once I was back on a stretcher, they took me for a CT scan. Dr. J came in to tell us why I was having so much pain - I had a bowel perforation. I had been living with this perforation for almost 5 days. He immediately took me into surgery and I woke up with a temporary illesotomy (one of two I would have temporarily over the years before I was given a permanent one in 2006). I was devastated and scared, but in the end, it was a life saving measure. I almost died from this event, which I have always down played over the years. Dr. J was very clear with Bob and my mom about how serious the situation was that night in June 2001.
I ended up having that temporary illeostomy until March 2002. They took me into surgery in January 2002 to try and reverse it, but my body needed more time to heal. The rest of 2001 was very difficult for me. I was not feeling good about myself at all. I was doing my best to learn how to live with this bag on my tummy, but the psychological effect on me was massive. My dad was so supportive and would not let me get down about it. My saving grace was my Bob who stood with me and loved me through all the sunshine and darkness. I remember being in one of our best friend's weddings in Charleston in December. We had a great time, but I was so self conscious about the dress as I always felt like everyone could see the bag through my clothes. The picture above is from New Year's Eve 2001 with those same friends. I was happy standing next to my Bob, but still not feeling that great. There is probably a reason we have very few pictures from 2001. Bob and I always make the best of it and I'm not trying to sound overly dramatic. There are so many people that have it so much worse, I know. I'm just trying to share my memory of a difficult start to a even more difficult journey. It's time to make peace.
The only surgery I have ever had that was done laparoscopically was in 2012. Every other surgery that has been done on me has required opening me up. This wear and tear on my body of scar tissue and adhesion's just led to more surgeries. I think I could glow in the dark with the amount of radiology visits I have had over the years. Time to make peace with the IV they had to put in my foot in the middle of the night. The failed epidurals. The pain medications that were not ready when I woke up from surgery. The blood transfusions. My 5-week hospital stay. The intestinal blockages. The daily enemas. The great amount of adhesive that has been put on me and torn off. The pic lines. The bottles of IV contract I had to drink when I was too sick to ingest anything. The ambulance ride transferring me from one hospital to another. Watching my family sit in uncomfortable chairs for hours on end. It's like I just have to get this out of me!
I always thought that June 2001 was the worst month of my life, until I reached July 2009 when we lost my mom. I say all of this and share all of this to be able to see how far I have come, how far Bob and I have come. He has loved me thorough it all and I am forever grateful to him for it. I am ready to make peace with these memories and know that they are part of what gives me my strength today. We can all name that day, month, year, or period of our lives that was most difficult. My hope is that we can see it as part of a greater journey and embrace it as part of ourselves. Sometimes it's not possible, but it sure is a blessing when you are at the place when it is possible.
You are amazing, Susie!
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