Four dilations later, I am feeling much much better. A stricture is something I wouldn’t even wish upon my worst enemy. It’s a difficult thing to explain to people who have never experienced it before but I am glad it is almost fully gone. I managed to stay positive throughout the entire process; however, it was not an easy one.
Like most things associated with the CDH1 genetic mutation, it is not only a physical challenge but more of a mental challenge. You know you need to eat to sustain your weight but your body won’t allow it to happen. Each meal would initiate a new game of, “will it go down?”. I would psyche myself up for each meal, chew food to a pulp, swallow, and then wait a minute to see if it would make it down. This may be too much information, but I got really good at walking and spitting things up on the go. It would take me close to forty five minutes to finish just a small portion of food. Start dinner at the dinner table with Brandon, then move to the couch once he had finished eating. Sometimes, I would avoid foods that needed to be chewed a lot because I was just tired of doing it.
Counting calories became a really big thing during the first few months of recovery. I had to make sure I was consuming enough to sustain my weight. I would try hard to eat all day but then step on the scale the next day to see that I had lost more weight. At my lowest weight, I was 104lbs. I was starting to look too thin and my family had mentioned it a few times. This was not a battle I was willing to lose.
To complicate things, I would feel better after the dilations but about two weeks later, I would have issues eating again. Physical stress. Knowing that I had to go back to the specialists to be dilated again but not being able to get in for an appointment. Mental stress. Watching your weight shed off and there was nothing you could do about it but keep trying. More mental stress. Starting to notice that your family is starting to worry about you….the most stressful.
Jump forward to the fourth dilation. I haven’t had to run to the washroom in about three weeks and if I have to go, it’s because I’ve eaten too fast. Something I can control. I can eat close to a normal sized portion of food. I’m feeling WAY better and I’m maintaining weight at a healthy 106.6lbs. I know that I would have been a lot further ahead in my recovery if it wasn’t for this stricture. However, there is no sense on dwelling on this and feeling sorry for myself. It is in the past and as Rafiki states in the Lion King, “It’s in the past and it doesn’t matter…you can either run from it or learn from it”. I choose learn.
When I was younger, I had fairly bad seasonal allergies. One summer, I had hives all over my body. I was so, so itchy all the time. One day in the midst of scratching my arms, legs, and back, I told my mom, “I just have to make peace with my body”.
Almost 7 months post op, I can finally say that I’m on an even playing field with the stricture. It’s not gone…yet…but I feel like I’m on the winning side and peace is nearing.