Some of you reading this post may have a feeding tube, but I’m betting that most of you do not. Three weeks ago I went for surgery to have a G-tube inserted. It required an endoscope down my throat to locate my stomach. I thought that would be the worst of it. Turns out that was the painless part.
We arrived at 10 am for a noontime surgery. This was only my second surgery. The first was 1962 for a tonsillectomy. The waiting room for surgery stretched out the length of a football field. I was not optimistic about getting in on time. Of course, I was mistaken. The whole process ran like a well-oiled machine.
First I met the nurses and importantly the hoyer lift expert who got me from wheelchair to hospital bed. I met two doctors on my surgical team and then about five minutes before noon the surgeon came to greet me. I was taken into the operating room (it’s big!) and they explained a few things to me, including that they were restraining my arms. A bite block was inserted into my mouth for the endoscope and soon I was knocked out. The doctor, true to his word, paged my husband 15 minutes later and told him the procedure was done.
I woke up to pain and a new body part — a flexible tube from my stomach which exited under my left breast. This was definitely not the optimal location I was hoping for. The pain was pretty bad and I asked for pain medication three times. Someone told me it was comparable to be stabbed in the stomach. Duh! I was miserable for a week. Now and then I took over-the-counter pain relievers. At night I had stomach spasms which woke me up. I constantly complained that I thought the tube was too tight. I joined a group on Facebook for people with feeding tubes to learn about their experiences. Finally, eight days later I returned for a follow-up visit with the surgeon. I was ready to tell him this was the worst pain I have had to date with ALS. I was not a happy camper and I had some questions for the doctor. Fortunately, my husband and my inability to speak coherently prevented a verbal assault on the doctor. Of course ALS is the culprit, it has ruined my ability to eat and swallow.
Once the stitches were out and the tube loosened a bit, I returned home. The spasms abated to just one or two. I was overjoyed because I thought that waking up in pain was going to be my new reality. By the second night, the spasms were gone. I spent the first few days trying to figure out what to do with this new dangling appendage. It felt itchy and bothersome at the site. Now, almost a month later it doesn’t really bother me. It’s just there. I don’t use it for feedings except an occasional Boost or Ensure when we are in a rush. The feedings work by gravity, no pumping needed.
So why did I get the tube if I don’t use it? It was because with ALS my forced vital capacity (lung capacity and breathing level) is slowly decreasing. If it fell below a certain level, the surgeon would not perform the surgery. If I wanted nutrition, I needed to do it now. So it was a proactive decision.
I tuck this new appendage into a feeding tube belt I wear over a man’s tank t-shirt. The t-shirt helps my sensitive skin from being bothered. I’m working up to putting on a bra again. I don’t know if the tube placement will allow it. So at present the surgery has made me a bra-less rebel. I guess I can live with that.