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Tue, May 19 10:55am · Feeding tube falls out. in Head & Neck Cancer

Hi everyone. I know I'm late coming to this discussion but I did have a feeding tube for a couple years and it did fall out several times. Each time I ended up hospitalized for several days after going to an ER. The first time it happened I lost consciousness and my wife called 911 because I appeared to be having a seizure. (I got tested and it turned out the fainting and "seizure" were apparently just some kind of anxiety attack because the test found no evidence of neurological problems.)

The second time I "lost" my tube it was because a silly black cat named Tex was sitting on my lap while I was connected to the feeding pump. Tex decided he wanted to do a dramatic dismount and leap onto the floor but he got tangled up in the feeding line and pulled the j tube right out of my abdomen. And it didn't hurt at all. In fact, I never noticed any pain when the tubes fell out.

On average, it seemed like I was going to the ER every six months to get a tube replaced. In fact, one MD in an ER told me and my wife that the tubes tend to deteriorate from exposure to digestive fluids and seldom last more than six months or so. However, when I asked a GI specialist about this, he adamantly insisted that some tubes can and do last as long as five years. He assured me that doctors are not deliberately installing tubes that need to be replaced every few months.

Anyway I was able to train myself to regain the ability to chew and swallow enough soft food so that I do not need the feeding tube. I stopped using it a few months ago, and then about three weeks ago it fell out. I am not going to have it replaced. I still have a stoma in my abdomen that is healing slowly. There was some kind of infection near the site when the tube fell out and I am taking Keflex for it but will be through with the antibiotic in a day or two.

I had some scary but inconsequential pain in the first few days after the tube fell out. It was intrusive enough that I took a Tramadol just so I would not have to think about it, but after a day or two it went away. I've been told I might experience a few pin-prick pains in my abdomen at random times over the next couple months but need not worry about the minor discomfort.

Sun, May 17 11:44am · Difficulty swallowing meds: Resorted to DIY pharmaceutical compounding in Digestive Health

I was irradiated for cancer of the nasopharynx in the mid-1970s. Over the years it has gotten increasingly difficult for me to swallow food and pills because of the long-term damage from the radiation on my throat and mouth tissues. Food and pills get stuck in my throat and I have to cough them up to get them loose and then try to swallow again. A lot of food ends up coming out my nose, sometimes. Ick. The dysphagia is aggravated by the fact that I also have a condition called trismus, which means that the radiation made it impossible for me to open my mouth more than a couple centimeters at the widest. Also my teeth are in horrible shape due to xerostoma and no dental work can be done to fix that because of the radiation damage and the risk of osteoradionecrosis as well as dentists or oral surgeons can’t get access to my mouth because I can’t open it very wide.

Anyway, I’ve had to take a bunch of big antibiotic pills recently and the only way I can swallow them is to grind them up and put the powder in something like pudding or yogurt and gulp it down as fast as possible so the taste doesn’t stay in my mouth.

I know some pharmacies will do “compounding” where they take pills or powders and mix them into flavored liquids for patients who can’t swallow pills, tablets or capsules, but I am hard of hearing to the point that most people would consider me deaf (not Deaf as I don’t use ASL) and I hate dealing with pharmacy bureaucracies and insurance company drones, so I looked into doing my own compounding.

Right now I’m about halfway through a 10-day course of Keflex, twice a day. It comes in gelatin capsules and is already finely powdered, so it does not need grinding. I’m getting a mortar and pestle for the pills that do need to be ground up. I’ve been using a twist-action pill crusher but sometimes pill crushers leave too many chunks of intact pill mixed with the powder. These taste awful and they can get stuck in my throat.

A company called HUMCO makes a “suspension vehicle” called Flavor Plus, which is like a thick, bland-tasting syrup that holds solids (powders) that won’t dissolve in water. So I got a bottle of Flavor Plus as well as another HUMCO product called Flavor Sweet, which adds a fruity taste to the mixture of Flavor Plus and the medicine.

To prepare a dose, I empty a Keflex capsule into a medium-size plastic Solo cup (about 4 inches tall). Then I get a 30 cc dosage cup from a bottle of OTC cough syrup and fill it with a 50/50 mix of the suspension vehicle and the flavor syrup. I pour the 30 cc of goopy liquid into the Solo cup with the powder from the Keflex capsule and then I mix it all up.

You may not be able to get a good mix just stirring with a spoon or fork. I use a cheap, battery powered “milk frother” that I bought recently for other kitchen purposes, but it does a great job of uniformly distributing all the powder in the liquid. It turns it into a pink foam that is easy for me to swallow and the taste is tolerable.

I’m not posting this as an endorsement of the products I’m using, and I’m not urging anyone to duplicate my procedures. I am a complete beginner when it comes to converting solid pills into liquid syrups, so I expect I will be learning a lot of lessons as I make rookie mistakes in the future. I am hoping to raise general awareness of the problem of dysphagia in patients who were radiated for head or neck cancers and other long-term side effects of radiation in cancer survivors. I was irradiated 45 years ago, and for most of that time the side effects were easy enough to manage, but over the past few years they have really caught up with me. I know I’m not the only surviving cancer patient from the ’70s who is dealing with these issues in 2020, but also there are probably not very many of us so we are not very visible to the medical industry behemoth.

Sun, May 10 9:35am · Feeding tube just fell out and I don't want it replaced in Digestive Health

Update: The home nurse service sent an RN to my house a few days ago. She told me that I can expect a bit of discomfort for a couple months. She said that the stoma site will probably first close on the outside and then seal up inside my abdomen.

One embarrassing development was when air or gas started escaping from the stoma and making a Whoopie Cushion sound, but the RN told me this is just a sign of normal digestion.

I am trying to consume more protein because the LVN told us that would help with the regrowth of tissue at the stoma site.

I went to my primary care doctor's office and saw a PA for a follow-up. He noted that there is still some fluid discharge that could indicate the infection near the stoma is still active so he prescribed Keflex. I had been taking Bactrim.

I have had no significant pain for the past couple days.

I hope everyone is having a good weekend.

Tue, May 5 4:22pm · Feeding tube just fell out and I don't want it replaced in Digestive Health

Hello everybody. I wish I could tell you something definite but I'm on a roller-coaster of ambiguity. After having a lot of pain a couple nights ago I was just fine yesterday and last night but then about noon today the discomfort started up again. I have seen the visiting LVN twice and spoke to a GI doctor on the phone. The LVN put a dressing on the stoma and told me to leave it untouched until I saw a doctor but I just had to change it anyway to see if more discharge was coming out. It isn't, so far. The LVN gave me a friendly lecture and put on a new dressing yesterday. The GI doctor does not seem to think I need to worry about anything.

The LVN said I should take acetaminophen or ibuprofen for pain instead of Tramadol because opiates give me side effects like nervousness or insomnia. I used to take ibuprofen daily but in the past few years my dysphagia has gotten to the point that I can't swallow aspirin-sized pills now without them getting stuck in my throat. Tramadol is small enough for me to swallow, but like I said, it makes me feel weird and often I can't sleep. So a few minutes ago I took an Alka Seltzer Plus and I hope it helps get rid of the pinprick pains that keep bouncing around in my abdomen and ribcage. Every once in a while the stoma sends out a microburst of burning pain, which I guess is just to be expected and does not concern me too much as long as it does not get worse.

Sun, May 3 10:38pm · Feeding tube just fell out and I don't want it replaced in Digestive Health

Hi Colleen. I am not sure if another LVN is going to come by my house or not. I just had to take a Tramadol because of pain in my abdomen sort of near the stoma site, so I hope it is not a sign of trouble. It reminds me of kidney stone pain, so maybe I have another one of those. I really really don't want to go to an ER so I hope I can wait to see one of my regular doctors tomorrow. So far no symptoms besides pain.

Sun, May 3 3:56pm · Feeding tube just fell out and I don't want it replaced in Digestive Health

I appreciate the response. I was worried because of the weird sensations that were coming from the stoma area and nearby in my abdomen/thorax region so I first went to an urgent care and they told me I would have to go to an ER, but I didn't want to do that so I came home and called a home nurse service that was scheduled to visit in a couple days and they sent an LVN to check me. She told me it was most likely no big deal.

I got the first tube implanted a little more than two years ago, and it just fell out one morning for no particular reason after about four months. I got a new one installed immediately but then after another few months a cat accidentally pulled it out of me while jumping off my lap. So I got a third tube inserted and then I inadvertently cut the end off of it while changing the dressing, so I had to be hospitalized again to get a new one. After a few more months I had to have that one replaced because it had apparently come out of place and caused an infection and pancreatitis and coincidentally I turned out to have a kidney stone, so it was like a "perfect storm" of abdominal pain.

I am really glad that I have been able to regain the ability to chew and swallow. I hated being anchored to the feeding pump for hours a day, and the tubes kept getting infected or clogged. There were other hassles related to my hearing loss, like I could not hear the alarm sounding on the pump if it ran out of fluid or became clogged but everyone else would hear it and get annoyed at me for letting it beep. Good riddance to Kangaroo Joey and that darn hose hanging out of my belly!

I sure hope I don't have the same kind of trouble your son had with the stoma refusing to close. The LVN told me to just apply gentle pressure to the site over the next couple days to push any scar tissue back down below the surface and says I might have a small permanent bump there but it will eventually heal over.

Sat, May 2 4:16pm · Feeding tube just fell out and I don't want it replaced in Digestive Health

OK, my medical history is long and convoluted and I would prefer not to recapitulate it here because I just have a fairly simple question. Suffice it to say that I was hospitalized for pneumonia a couple years ago and doctors installed a gastric feeding tube because they were convinced that my swallowing mechanisms were permanently ruined by radiation treatment in the mid-’70s and I would never be able to eat like a “normal person” again.

I have gradually been able to train myself to chew and swallow soft food over the past year or so, and the feeding tube kept getting infected or falling out or being dislodged and causing problems, so I have been trying to get an appointment to have it taken out, but the combination of my hearing loss (which the medical industry will not accommodate) and the COVID-19 outbreak have made it impossible to get in to see a doctor.

Finally, today, the tube just fell out. I assume the balloon must have drained. Also, the stoma area was infected and I’ve been treating it with oral and topical antibiotics as prescribed and directed by a physician’s assistant.

So I am hoping that I can just let the stoma heal itself and get on with my life, but I wanted to make certain that there are no potential complications if an unwanted tube just falls out by itself and is not replaced. The tube fell out about an hour ago and I am feeling OK so far, just a little odd discomfort around the stoma site. Due to the virus lockdown, I was not planning on doing any travel or work today anyway, so I will probably just spend my time on the couch regardless.