Emergency Surgery During COVID (Part 2)
We left off in Part 1 realizing that I needed to go to surgery. As I wait for the doctors to come into my room and take me back to the OR to fix the bowel obstruction caused by CF, I make all my calls to my family. The emotions running through me are so high. My parents, siblings, and poor wife-to-be have to sit at home, helpless, knowing what I’m about to go through. I cannot begin to explain the fear going through my mind.
The last time I had this surgery it did not go well. It was a very, very hard recovery. The hardest part, other than going through this alone, is the fact that I just worked so unbelievably hard for the last three months at home getting in the amazing shape I am in, knowing I’m about to lose it all and then some.
Hoping to avoid a colostomy bag
Eventually, my surgeon came in and wheeled me into the OR for my bowel obstruction surgery. It is extremely difficult to even put this in writing. There is a possibility I could end up with a colostomy bag, which is something I absolutely do not want. I mean, who the hell would? To anyone who lives with one, you are the strongest human being in the world. I give my utmost respect to you.
The lifestyle I live is not one that would work well with that. I know most people that live with a bag can do just about anything anyone else can do. But being the stubborn man I am, my pride wouldn’t work well with it. It would crush me to oblivion.
Like most CFers, I have just had enough. I don’t want one. Period. Stop telling me it’s ok because it is just not ok. I would rather be told, "yup, it’s gonna suck." I would respect that a lot more.
Bowel obstruction surgery with CF
As I lay on the operating table, they ask me a few questions and then they ask if I have any questions before I go to sleep. I tell them to avoid the colostomy bag at all costs. I will fight to get this stomach working again, no matter how long it takes. And to please take good care of me. I have a girl at home waiting to marry me. Don’t ruin that.
The nurse smiled and held my hand and put me to sleep. I woke up in a lot of pain, and it took them a while to find the right dose of medication to help keep me comfortable. They gave me a PCA for pain control, and they also decided to put an epidural in. That was awful because I had to roll onto my side to have a spinal tap hours after having my stomach cut open. Good news is... NO COLOSTOMY BAG! Bad news is, they did major, major work. They spent about 5 hours clearing the obstruction out.
Results of the surgery
Eventually, once I was a little more awake, my surgeon came to talk to me to explain what they did. Basically, all the surgeries I’ve had in the past on my abdomen have caused lots and lots of adhesions, which in turn caused the bowel obstruction. My doctor said he cleared out the adhesions that caused the blockage. He told me my intestines were kinked like a garden hose gets kinked to stop the flow of water. He said they didn’t want to cut into my bowels because that would have required a colostomy bag.
They basically massaged the bowels to help stimulate them when I woke up. The only problem is, there is no telling how long it’s going to take in order for them to wake up. Usually, for someone without CF, it could take 3-4 days for their digestive system and bowels to wake up and start moving again.
Three days go by and I use the bathroom for the first time. Good sign. Maybe it’s not going to take me as long as they thought. So they decide to pull the NG tube, wait 24 hours, and see how I do. If I get nauseous or can’t keep down my food that means I am not ready and the tube could be put back in.
Well, 24 hours go by and I’m as nauseous as can be. Just the look of food makes me sick. They ask me to try and drink a little and try some jello to see what happens. I tried and failed, throwing it all up within a matter of hours. I was crushed. At this point, I knew I was going to be here for a very long time. This is a major set back.
The next morning they decided to reinsert the NG tube. They did an x-ray and another CT scan and told me I have a post-op ileus. I am really in for it now. Just when I thought I might be going home, this is where it gets really, really hard.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?