The Crevasse

I have said it before, and I will undoubtably say it again, but our medical system is not designed for chronic illness. Instead, we are forced to use our limited spoons to get the support and education we need.

I have been trying to figure out how the whole tube feeding thing works since my GI gave it the thumbs up. I have done my research and spoken to experienced tubies and it seems like we are left on our own to figure things out.

Some background. Connecting the tube coming out of my body to the feeding tube is a bit fussy, but nothing terrible. Apparently, this is all that they may or may not teach me when I get the tube. You know, when I am still hazy from the anesthetic.

Gastric tubes that go right into the stomach come with options. Tubes that go right into the jejunum are limited to continuous pump feeding because the small intestine is a relatively narrow tube without the ability to stretch the way the stomach can. The pump pushes in formula at an adjustable flow rate based on what each individual can tolerate. Depending on the flow rate, it can take 10-18 hours to get in a day’s worth of nutrition.

Folks who can tolerate a faster flow rate can get all of their feeding done while they sleep, although not everyone finds sleep feeding to be comfortable. Most folks just walk around tethered to a backpack that holds the pump and formula. By all accounts, once you get the routine down, the only hindrance that comes with tethered feeding is having to carry a second bag around with the usual crap one walks around with.

The real challenges come with training and troubleshooting. In theory, my insurance company is supposed to send someone to train me how to feed. I have yet to encounter anyone who has had a visiting nurse sent to their door. Sometimes they have gotten links to videos. Usually, they get nothing. Their training has come through trial and error and the wisdom of the ones who have navigated the path before us.

The troubleshooting kinda scares me too. Nobody seems to know who I contact when the tube gets kinked or blocked or shifts in such as way that causes pain. These are not uncommon challenges. What most people end up doing is going to the ER multiple times because it can be hard to spot a kinked tube if you do not know what you are looking for. And most folks in the ER, decreasingly populated by doctors and instead filled with PAs, know how to deal with a kinked tube.

So you are sent home, perhaps after having received some electrolytes and hydration, but certainly without getting the issue resolved. So they call their GI, who sends them to the ER who still don’t know how to deal with a kinked tube. Eventually, after much to-ing and fro-ing with insurance companies, you get an appointment with a doctor who knows what they are doing and get your tube adjusted. but throughout this extended period, one is once again not getting adequate nutrition and is quite possibly in a fair amount of pain and is decreasingly able to self advocate.

I wish I could say that this was only one person’s experience. But I have seen the same story told over and over again, from all over the country. Urban, rural, well-resourced and on medicaid. Other countries certainly aren’t perfect, but they do seem to have a better system in place for these kind of chronic issues because it is a single payer system that has all of your health records in one place.

I am a smart, educated woman who has no problem forcing confrontations when necessary. Hell, I have taken on Sallie Mae and won (admittedly, this was when student loans were still regulated by the federal government so my congressional House Rep had a direct line to people with the ability to make decisions). I am going in with my eyes wide open that there will be problems. But I really shouldn’t have to rely on a peer group to learn how to navigate something as important as feeding myself.