It’s hard to believe, but it’s been one year since I underwent ileostomy surgery. I had a weeks notice that I was going to have the surgery and there was so much to adjust to! First, and most importantly, I had to bond with my stoma, and invite him to be part of me. Will quickly suggested we name him “Diglett” because he thought a stoma looked like the little, brown Pokemon. I thought the name was perfect: unique, fun, and quirky. Because of this I have been able to connect deeply with him. I talk to him, laugh about the noises he makes, and thank him for helping me. I wanted to celebrate the surgery, the past year, and the people who have helped me get through the transition.
The surgery was hard and long. I was under anesthesia for 6 hours. I woke up in pain and truthfully was freaked out by my bag. I was worried I wouldn’t be able to change it myself, that people would judge me, and many other anxieties. But I was also excited. The surgery meant I wouldn’t experience pain as often, debilitating diarrhea, or as many hospitalizations. Or at least I thought…
If you’ve followed the blog you know this year has been a challenge and a major adjustment. I still have high ostomy output, which causes dehydration. I have experienced pain frequently. And I have definitely had my fair share of hospitalizations. I require home health twice a week and 4L of IV fluids just to function.
Although these may seem like huge negatives that wouldn’t make the surgery worth it, I disagree. Diglett has allowed me to eat food again – almost anything I want! Prior to surgery I was limited to about 5 different foods and if I strayed at all I would have terrible symptoms. After the first month of my recovery I started adding different foods back into my diet. It has been so freeing.
The first month after surgery was exhausting. I was not allowed to lift anything more than 5 pounds (which, dang, everything weighs more than that!) Luckily I had the best support system. My dear mother flew in from CA to be with me the entire hospital stay and for a week when I got home. She cooked, cleaned, organized my house, and helped in every way possible. We would not have survived without her. Next, my mother and father in law came in town to take over when my mom had to leave. They helped with cooking and driving me to doctors appointments. My father came in town several weeks later to drive me to all the post OP appointments and generally help out. We were lucky to have had such a wonderful team.
My husband stayed at the hospital with me the first night, but had to keep working in order to keep our mortgage payments and other bills paid. He worked so hard on the clock and then came home and helped me every day. I am still in awe of the sacrifices he makes to help me heal.
After surgery I tried to go back to work part time. It was a struggle because I was dealing with bag leaks, pain, and dehydration. I had to miss a lot of days and was completely drained on the days I was there. Will and I made the decision that I was not ready to work yet. And am still not. With nearly 40 days inpatient in the hospital this year, I’ve been unable to reenter the workforce. So Will has graciously become the sole provider in the house. He puts in long, hard days every day and then still finds the time to help at home. I am so grateful for his sacrifice and his love.
I’ve also be lucky enough to have amazing friends stand by us this past year to help with meals, car rides, and emotional support. So I decided I wanted to thank all of them with a party… a way to celebrate the good things that have happened this year and the promise that things will continue to improve.
The party was medical themed. We played lots of games, like “Medical Bingo”, “Pin the Ostomy on the Stoma”, and “Operation.”
We also ate “Tylenol” (which were frosted Nutter Butters) and took “pills” (Skittles).
We also drank “blood” out of IV bags (koolaid).
We laughed, we danced, and we had an incredible night celebrating instead of focusing on the negative.
I want to thank everyone that has offered us support this year. We know that behind our success there is a village of people who has helped get us here. I am encouraged 2020 will be even better, with fewer hospitalizations!