It’s been just over three weeks since my J tube was surgically placed. Like I wrote last week, it's far too soon to reflect on it. Every day, things get a little better in some ways and also somehow a little worse in others. I'm recovering from surgery and getting into a routine and life with a feeding tube isn't easy.
Before surgery, I read everything I could find about tube placement and enteral feeding in adults. I read personal anecdotes in forums, blogs, and social media. I read studies. I read articles. Even so, there wasn't a lot of information out there to help mentally prepare me with what to expect. I'm not sure anything could have.
And so, as you might imagine, I've had a lot of learnings over the last few weeks. Here are 10 of them.
1. Abdominal surgery hurts a lot.
There's no sugar-coating it. Even with a robot-assisted laparoscopy and just a few small incisions, having your abdomen operated on and a plastic tube placed through your small intestine hurts a lot. Like a lot a lot.
The first thing I remember about waking up from anesthesia was pain. It wasn't just in the abdominal area but across my entire torso, including my shoulders. The next day was worse. Hiccuping, burping, and coughing were—and still are—hell. And don’t even get me started on sneezing.
There was also distention and bloating. I'm not sure if it was from the air that was pumped into my abdomen (this happens with most abdominal surgery, I think—it provides the surgeon room to work), or just from the bowels going to sleep from anesthesia, but wow the bloat was bad. It was like the worst bloat ever times 100. It took an entire 24 hours for it to start going down, but I had distention for at least two weeks.
(As an aside, when I was trying to describe this pain to Robbie the day after surgery, I asked him if he'd ever had bloating pain before. He hadn't. So anyway I’m now unsure if cis men will understand what I mean when I talk about really bad bloat, but I can assure you it was really bad.)
2. Abdominal nerve blocks are helpful but weird.
One of the things my anesthesiologist did to help with pain post-op was give me an abdominal nerve block.
And wow did it work, because the next day, when it wore off, was incredibly painful. It was the most pain I had in terms of surgery recovery. I didn't realize how lovely things had been so far and my 5mg of oxycodone wasn't doing much for it. So if you have an opportunity to get a nerve block for a surgery like this—take it. It will hopefully help make things a bit more tolerable at first.
But be warned about this very weird side effect: I couldn't feel when I was peeing. That doesn't mean I made a mess or anything—I could feel that I had to pee and I could control my bladder to the most basic extent. I just couldn't feel if I was actively peeing when I was trying to. I had to keep looking to see. It was weird. I was glad when that sensation returned, even though it brought loads of pain with it.
3. POTS and anesthesia aren't friends.
For those that don't know, I have a condition called POTS (postural orthostatic tachycardia syndrome). It's a form of dysautonomia. To put it simply, it makes my heart beat very quickly almost all of the time (especially sitting or standing), causes my blood pressure to be abnormally low, and also results in me almost fainting several times a day, among other symptoms. It's pretty debilitating.
While I've had anesthesia before and know it does weird things to my heart rate, it was all a bit extra for this surgery. Even though I was connected to saline almost an hour before my actual surgery, my heart rate was apparently 120bpm almost the entire time I was sedated and jumped to 150bpm for about an hour after I woke up.
What happens when your heart rate is 150bpm for so long after you wake up from surgery? The recovery team keeps you until it drops back down to 120bpm and pumps you with more fluids. Which made me have to pee a lot. And as we already know, that was a really weird experience on that first day.
4. The national shortage of feed and flush enteral bags is really annoying.
Something you may not know if you don't know anything about tube feeding is this: you have to flush your tube with water several times a day in order to keep it clean from clogs and prevent damage to the tube. Enteral formula is pretty sticky and can sometimes be quite thick—and J tubes aren't very big. This means they can clog easily if you're not careful.
In the hospital, they had feed and flush bags. That means there was a bag full of formula and another full of water. Every hour, the pump automatically paused the feeding and flushed the tube with 10ml of water.
That water is also helpful for hydration, which is great for POTS. I've had POTS for 5+ years at least, but it got so much worse when I developed gastroparesis—largely, I think, because I can't adequately hydrate. While there's no way I can get the recommended 3L of water to help manage my POTS symptoms even with a feeding tube, it can at least give me an extra cup or two each day.
Anyway, as it turns out, there's a national shortage of feed and flush bags, so the medical supply company I'm working with hasn't been able to get any. That means I'm doing manual flushes with a syringe every four hours (or eight hours after sleeping overnight). Which means instead of 10ml at once, I'm having to push at least 60ml at a time (often 100ml in the mornings) to adequately clear the tube.
The small intestine—which is where a J tube sits—can't hold a lot. It doesn't have a reservoir like the stomach does. Additionally, thanks to highly suspected intestinal dysmotility, I'm only tolerating 30ml an hour as my feeding rate right now without excessive bloating and nausea. As you might imagine, 60ml+ of water all at once is a lot. The water flush almost always makes me feel nauseated, especially in the mornings.
Fingers crossed that national shortage resolves itself soon and I can get something that will help me both keep my tube clean and be less nauseated.
5. Adapting to tube feeding is unpleasant.
It seems like a cruel irony that the thing that's saving my life is also the thing that's making it suck a lot more.
My gastroenterologist reminded me before surgery that this J tube isn't a treatment for my disorder; it's to keep me from dying. That means I still have all of the symptoms I had before—pain, nausea, fatigue, early satiety, etc.—plus all the stuff that comes with having a feeding tube. Which, according to my surgeon, may vary, since my body will always be trying to eject this foreign plastic object.
While I've definitely had more nutrition in the last few weeks than I have over the last year, I've also had more nausea and more pain. Some examples:
- Bumping up my feeding rate too soon led to a lot of vomiting of formula, which led to an incredibly painful infection that resulted in an ER visit and re-hospitalization during a pandemic. I thought the pain from the surgery was bad. It was nothing compared to having fluid and air fester in my abdominal cavity.
- Tube sites leak a sort of bile-like, acidic ooze. That ooze stings and gets trapped under the bumper of my tube (a plastic ring that's currently sewed to my skin to stabilize things), and I think it might be burning the skin there.
- There's also the pain from the balloon that's holding the tube in place from the inside. While they decreased its volume from 7ml to 6 during my second hospitalization (which helped a lot), I can still feel it when I move sometimes. I can also feel it throughout the day in cramp-like waves.
Overall, it's been really unpleasant. While I've heard that it gets easier to manage with time, it's because I'll get used to it. And it sucks so much that this a thing I have to get used to.
6. Tubes also come with a variety of problems.
Tubes have a lot of potential complications, like infections, clogging, the tube falling out, leakage, and build up of granulated tissue. Going into all of this, I knew I would not be immune.
What I didn't expect was to have my first infection within a week of getting the tube, or to have my first clog within three weeks. But here we are and I've lived to tell the tales. While of course I'm doing what I can to prevent problems, my diligence can't guarantee these things won't happen again—or that I won't have any other dangerous complications.
What I know, from both anecdotal evidence and studies, is that tube-feeding will likely result in more hospitalizations than I'd otherwise have. It already has. The best I can do is know when to get emergency medical help, since infections can turn into sepsis fast and stomas can close up really quickly if the tube somehow gets dislodged.
7. Insurance doesn't always cover the cost of enteral supplies
Feeding pumps, enteral feeding bags, and formula aren't cheap—and in the United States, insurance companies aren't required to cover the cost of them. My insurance company, for instance, lists nutritional supplies as a general exception for coverage. We're still trying to appeal that, but I'm fully expecting to have to pay the $600 or so for the things I need to stay alive out of pocket each month.
This is a very scary time to be facing such high regular costs, given that no job is guaranteed and a lot of people in and out of tech have been laid off recently. Hopefully I don't have to deal with that as well, but in the meantime I'm going to try to save as much as I can each paycheck just in case.
8. Two weeks of leave isn't enough
I initially requested two weeks of unpaid medical leave and naively thought that would be enough time for me to recover from surgery and return to work. If I didn't have the infection, it's possible that would've been true. Instead, I ended up needing to take an extra week.
I think the part I wasn't considering earlier is that learning to live with tube-feeding is really hard. If it had just been a surgery, maybe I could have done two weeks. But so much more has changed for me—my life is now ruled by a feeding pump, for one—and it's a lot to get used to.
9. Going back to work feels scary.
I feel a lot of anxiety about starting work again on Monday. Some of it feels imposter-y in nature, because I’ve been away for three weeks during my first six months. Some of it stems from COVID-19, since I’m not sure what awaits me when I return.
Given that my health insurance is tied to my employment, I have even more reason than I did before to be fearful of the possibility of losing my job.
I know the only thing I can do is to get started and dig back in on Monday. My anxiety will hopefully ease with time.
10. I'm very loved.
By my second day in the hospital, my room had at least three flower arrangements. More awaited me after I got home the next week. Friends put together care packages with puzzles, slippers, socks, and more goodies—even a lilac beret. My book club gave me a basket of, well, books, and other fun things.
It was all so kind, and also, if I'm being honest, surprising. I don’t think I realized how I loved I am. I’ve lived with depression most of my life. It's a symptom of thyroid disease and it goes hand-in-hand with the nature of my illness(es).
Needing and getting a feeding tube when you’re almost 30 is a really weird and lonely thing. So few people know what I'm going through and a lot of folks, likely unsure what to say, have said some really insensitive things over the last few months. As a result, it's been really easy to feel alone in all of this. Seeing people show up for me over the last few weeks has been a really necessary reminder that I'm not. I really hope I don't forget it.
I never really know how to end posts like this. I feel like I'm supposed to neatly wrap things up with a tidy bow and positive tone. But realistically, that's not where I'm at right now. None of this neat. None of it is tidy. A positive tone might make my readers feel better, but it would hurt me. I'm hurting enough right now.
So instead, here's the truth. I'm incredibly grateful that medicine has a solution for life-threatening malnourishment. I'm incredibly grateful to have the financial privilege to get a feeding tube. I hope that I can start having even a little more energy and gain some weight back. It also really sucks to be so sick in the first place.