Getting my feeding tube (PEG)

By the time I saw the Oncologist, I was already having great difficulty swallowing and my larynx was very narrow. For this reason he highly recommended that I get a gastric feeding tube, called a PEG tube (percutaneous endoscopic gastrostomy). The typical risks of this procedure include infection and soreness after the procedure. Due to the location of my tumour, what I experienced was far from typical.

My swallowing ability would only become worse due to the radiation treatment (think of a really bad sunburn on the inside of your throat), so eating any food would likely become impossible. The feeding tube would then become my only method of getting nutrition and liquid medications. The tube would be inserted directly into the stomach through an incised opening through the abdomen wall which required an endoscopy surgical procedure.

Since treatment was going to start relatively soon after my initial meeting with the Oncology team, it was imperative that the tube be inserted as quickly as possible before my ability to eat worsened. The dietician, who was responsible for arranging the procedure, managed to get me an appointment with the Gastroenterologist on my second treatment day. It was to be an out-patient procedure and I would be home the same day.

We started the day off by going for my second radiation treatment at 8:00 a.m. Since I’d already had my first treatment I wasn’t nervous about that any longer, but now I was anxious about this procedure. I reported to the gastroenterology nursing station at 9:15 for a 10:00 a.m. procedure.

I changed into my gown then a nurse hooked me up to IV via my PICC line. It was the very first time that it would actually get used in spite of having had numerous blood tests, two CT scan procedures, plus a PET scan.

While I waited for my procedure an emergency patient was brought in, and subsequently my procedure was bumped one hour.

Finally I was taken to the procedure room by gurney where they numbed my throat and froze my belly. I was also given a sedative to relax me as I would not be given general anaesthesia.

Now before I go any further, let me advise you that, from my understanding, what I’m about to describe is NOT a typical experience. The location of my tumour led to complications that a typical patient wouldn’t experience. I also want to warn you that I will not be sugar-coating what happened — I’m going to tell it exactly as it happened so if you’re squeamish, perhaps you’d better stop here.

After I was sufficiently sedated, numbed, and frozen, they inserted a device in my mouth that would hold my jaw open during the procedure. They didn’t want me accidentally biting down on the endoscope that would be used to determine the placement of the PEG.

And then we we hit the first snag. The surgical team attempted to feed the endoscope down my throat using the standard sized scope (I was actually instructed to swallow it), but because my throat was nearly closed it wouldn’t fit. The tumour actually prevented the scope from going any further, and every time they’d try to feed it through they’d bump up against the tumour again. I felt as though I was choking. They removed it and tried again with a smaller scope, but again it wouldn’t go through and again they bumped up against the tumour. They then tried the smallest scope that they had and it finally went in.

By this time the tumour was very irritated and I could feel a lot of whatever the gunk is that the tumour excretes moving down my throat. I truly felt that I was choking on this but I was repeatedly told “you’re not choking” so I could only lie there and suffer through it. I don’t think they were aware that I had that much excretions in there, but because my mouth was propped open and I was sedated I couldn’t explain myself clearly, I could only mumble.

Once the scope was able to go down my throat, they fed it down to my stomach. The scope, as it was explained to me, has a camera at the end. They view the stomach wall to determine the best location for the PEG insertion and make the incision there. A tube is fed through that stomach wall slit, a rigid stopper or bumper is placed inside the stomach so that the tube can’t easily be pulled out, and a flange is fitted to the outside to keep the tube from sliding further into the stomach. The end of the tube outside the stomach was fitted with a drainage bag to let any surgical fluids escape, and they could also monitor how much bleeding there was.

I could feel the procedure because I wasn’t knocked out, and it was very uncomfortable but not painful due to the local anaesthetic and sedation. It actually didn’t take long once they were able to get the scope in there — perhaps 10 minutes at most? plus time to administer the sedation and anaesthetic.

Once they were done, the scope was removed and immediately I began to heave up the fluids that had caused the choking sensation. They would have brought me back up to recovery but they had to keep me there, using suction on me, until I stopped.

Once I’d settled down I was wheeled back to recovery. I’d been given pain killers intravenously before the procedure but it wasn’t enough. The nurses in the recovery room were giving me additional liquid pain killers by mouth (hyrdromorphone) but these had no effect, and I was in excruciating pain, far more than what they thought I should be in.

During this whole time Seaghan was asked to wait in a separate room but by now he was worried about what was taking so long. He hadn’t been informed that my procedure was bumped an hour, and he didn’t know that complications had developed. When they finally allowed him into the recovery room he was alarmed at the contents of the drainage bag, and also by how much pain I was in.

He asked the nurses that, if I’m being given pain killers by mouth, wouldn’t they also drain out into the drainage bag?  I was immediately given an injection of painkiller and that did start to lessen the pain, but not by much.

By this time the nurses were sufficiently concerned to call the Gastroenterologist and his head nurse into recovery to assess my condition. I was still in considerable pain and there was an awful lot of blood draining into the drainage bag. The decision was made that I could not be released, and so I would be admitted to the hospital.

I ended up sharing a room with two other patients, one who’d slipped on ice and broke a rib which punctured a lung, and the other who hadn’t been able to produce any urine or go #2 for a few days. I didn’t talk to either of them — I could only try to sleep and cough and endure the pain. I slept in fits and starts. It seemed that I was woken every hour for various procedures performed during the night. I was woken up for an abdominal ultrasound, several more blood tests, and injections of pain killers and anti-nauseants every few hours. It didn’t help that my agony prevented me from getting out of bed to use the washroom, and the other patients’ nurses were also disturbing my ability to sleep.

I missed Seaghan terribly, and I wondered what I’d done to deserve this. I cursed the doctor and I cried. It was not a good night.

The next day after my procedure, when I was supposed to be going for my first chemo session, would again be filled with setbacks. Stay tuned for the conclusion to this story.


Next time: the conclusion to this story

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3 thoughts on “Getting my feeding tube (PEG)

  1. So much suffering. Not to be flip, but I guess that’s why they call it “practicing medicine”. I have so many questions, but I’ll wait until the next installment; maybe they’ll be answered then.

  2. Horrible experience! I cant befin to imagine…whst amazing strength you have to go througj all that! And Its scary to think seaghan had to ask them what seems to be the obvious; if you give oral pain medication wont it just run into the drainage pain?

  3. It’s amazing what the medical professionals think a patient should endure without the proper method of delivery for the pain medications.

    I also can’t believe that the nursing staff didn’t think that the pain meds would be draining out along with the other contents from your belly. Good thing you had your husband, a professional TV producer, to tell them! Morons.

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