Life with a feeding tube

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.

Feeding Tube Placement

G-Tube

Feeding Tube Belt