To PEG or not to PEG: Pros and Cons of using a Feeding Tube
John was very fit and trim when he was diagnosed. He worked out with weights 3-4 times a week, took Pilates classes, and rode his bike regularly. At 5’7″ and 158 pounds he had very little body fat or weight to spare.
During the time between diagnosis and treatment we were able to add an additional 10 pounds to his frame, so he started treatment at 168 pounds.
Why John Chose the PEG Tube:
Going in, John was told he would lose 10-40% of his body weight from radiation. My biggest concern for him going in was weight loss. As I started reading blogs about dealing with side effects from radiation I first ran into the idea of a PEG tube. Punching a hole directly through your abdominal muscles and into your stomach sounded invasive and extreme, and I wasn’t sure John would go for it. As it turned out, he had no hesitation about it. John had just met a fellow who had gone through 6 weeks of radiation for HPV squamous cell tonsil cancer that was discovered in situ (that is, no spread to the lymph nodes) and he had chosen against the feeding tube. He ended up losing 40 pounds which actually brought him down to a normal weight. But John knew full well he didn’t have 30-40 pounds to spare!
John’s ENT and Radiation oncologist both recommended the PEG tube. John’s chemotherapy oncologist explained that the use of the tube is controversial to some. If a person becomes dependent on the tube and stops eating altogether they can have much more trouble regaining their swallowing ability after treatment. It was emphasized to John that even though he would have a feeding tube, he would have to regard it as an ancillary method of getting nutrition in him. He absolutely had to keep swallowing on a daily basis. John agreed to this. I had spoken with a local man who had undergone treatment for the same cancer 5 years earlier, and he had also used a PEG tube. He had gone for 5 weeks without swallowing at all, getting all his nourishment through the tube, and as a result five years later still had some difficulty with choking when eating. So John had a pretty clear idea that this was to be avoided.
John did continue to swallow every single day of his treatment and aftermath, even when it was excruciating to do so. He was told that water would be the most difficult liquid to swallow (thicker, more viscous liquids are easier), and so he made that his personal challenge and swallowed his morning pills with water every single day. As a result, he has had no difficulties with regaining his ability to swallow, as he never let it go.
It was recommended that John get the PEG tube “installed” at least three weeks before treatment started so that the wound would be completely healed up. He was warned that people who decided to “tough it out” without the tube would find it much, much more difficult to have one installed later.
Getting the PEG tube Installed:
John’s PEG tube was installed on 2.17.12. His first radiation treatment was scheduled for 3.12.12, so this gave him plenty of time to heal.
The procedure was done in the hospital under intravenous (not general) anesthesia. He was assured that this was going to be one of the simplest procedures with little downside or discomfort. Unfortunately, while this is true for most people, this proved not to be the case for him. I’m not describing this to scare anybody, but what happened to him has since happened to another acquaintance of ours who was subsequently diagnosed, and it is something that can be prevented.
John was sedated and taken into the procedure room. Briefly, a guide wire with a light on the end of it is run down the esophagus into the stomach. The surgeon then makes a small cut where he sees the light shining through the skin, and the plastic PEG tube is inserted through the hole. The tube is held in place inside the stomach by a small mushroom-shaped “cap” on the end. On the outside, the tube is held in place against the skin by a plastic hub.
When John awoke from the sedation he immediately had severe cramping. He was trying not to complain and to be a “good patient” but the cramps came in intense waves. He was given a shot of Dilaudid for the pain, but an hour later he was still having extreme waves of cramping. At this point somebody should have taken the bandage off his abdomen and checked the placement of the tube…but no one did. Instead, he was given another shot of Dilaudid. At this point John wanted nothing more than to get home and rest, and he assumed that the cramping would subside over time.
Unfortunately, while it did subside somewhat, the pain was still severe. When I came home from work that evening he was flattened in bed, unable to move an inch without intense pain. Sitting up in bed was impossible. He could slowly, with much painful effort, roll over on his side and I could then help him sit up. The waves of intense cramping were getting further apart but he was miserable.
Long story short, he spent an exceedingly miserable night in his reclining chair, hoping for respite. We knew we could go back to the emergency room, but we knew that would be an ordeal and that he would wait 6-8 hours in the waiting room.
I spent the evening searching the internet for an answer. I found two blogs where two men had the exact same experience. What they had in common? Both were lean, fit, muscled men with very little body fat. In one case the man went to the emergency room and the hub on the PEG tube was loosened by a GI doctor. In the second case, the man figured out how to loosen the hub himself, relieving his pain.
The following day we took the bandage off and studied the feeding tube. We tried fiddling with it a little bit to see if we could loosen it, but the mechanism for doing so wasn’t apparent. I called the on call number for the gastroenterologist who placed the tube, but instead of the call going to an answering service with a live operator, I got his office’s voicemail. Clearly I wasn’t going to get a call back before Monday (This turned out to be true, as the doctor’s office has neglected to switch their phone system over to the operator for the weekend).
What happens next shows the power of patience and persistence. I called the hospital and asked for the gastroenterologist on call. I was transferred to the emergency room, spoke with a nurse, and was transferred to the charge nurse, who couldn’t believe we could not contact John’s gastroenterologist. She even tried calling his office herself. She suggested we come to the emergency room. I explained that while John was very uncomfortable this was not a true emergency, that I didn’t want to make the 40 minute drive if I could help it, and that I didn’t want to sit in a waiting room for several hours with a cancer patient in the middle of a flu outbreak. She took my point and said she would contact the GI doctor on call.
15 minutes later the GI doctor on call called back. He had John’s records in front of him and saw the two Dilaudid shots that had been given. I explained John’s slim build and “wondered” if perhaps the tube was too tight. He agreed that John’s symptoms were likely muscle spasms from the tube being cinched down too tightly. He suggested we come to the emergency room. I explained again why I didn’t want to use the limited resources of the emergency room for a non-emergency. I explained that we were both medical people and understood the need for keeping the wound clean. I asked if he could simply talk us through the process of loosening up the tube ourselves. Thankfully, he decided to trust us, and explained how to go about releasing the pressure on the tube. It took us about 15 minutes of working with it, but once we loosed the hub on the tube and backed it out 2 cm, John’s relief was immediate and profound.
What am I suggesting here? I am not in any way, shape, or form suggesting that you fiddle around with your own PEG tube. I do suggest that, if you have it done:
1) Don’t have it placed on a Friday afternoon. If there’s a problem you don’t want to have to go to the emergency room.
2) Don’t leave the facility if you’re having pain or cramping, no matter how “difficult” a patient this makes you seem.
3) If you are slim or don’t have much body fat around your abdomen, report any cramping immediately. From what I can tell (and I realize this is only anecdotal), thin healthy men seem to have more trouble with their PEG tubes.
A couple of weeks ago I heard from a man about John’s age who weighed 130 pounds going into his treatment. There was no question he needed a PEG tube. He had the same experience as John, experiencing severe cramping and pain. He did end up in the emergency room until the gastroenterologist on call could come and loosen up the hub on his tube.
The feeding tube was a lifesaver.
One of the best resources I encountered was a blog called “You Start With a Tube.” The writer here was dealing with a long-term disease that rendered him unable to swallow, and he quickly grew weary of canned guck as well. Look for more information about him, about how to put all kinds of foods down a PEG tube, and how to deal with a clog if it happens.
Posted on July 4, 2012, in Feeding Tube Support (PEG tube), Weight, Food, and Swallowing and tagged Cancer Support, feeding tube, HPV 16, HPV positive throat cancer, HPV Throat Cancer, Oral cancer, oral cancer support, PEG tube, squamous cell throat cancer, throat cancer, tonsil cancer, tonsillar cancer. Bookmark the permalink. 6 Comments.