On Friday, I shared two pictures on Instagram for Feeding Tube Awareness Week. I’ve posted about my feeding tube a few times, I think – I had it placed in 2013, so I’ve had it for quite a while now! I think it’s super appropriate to post about on Valentine’s Day, because deciding to have my feeding tube surgery was possibly my biggest act of self-love, ever.

After I shared my pictures on Instagram, I also put up a question box for any and all feeding tube related questions, and I’m answering them in today’s post.

Do you have the feeding tube to get more nutrition/calories or are there swallowing issues?

I thought that this was a good question to start with because I can explain why I have a feeding tube, because the answer is a little bit of both! Swallowing uses muscles, and because my muscles are weaker, I can have trouble swallowing certain things (and chewing, too!) – but it’s something that I’ve learned to adapt to over the years and only eat things that are easy enough for me to chew and swallow. And likewise, I’ve always been petite and thin and underweight – I’m small in general, and it just comes with the territory of SMA for me. But about a year or two after graduating college, I was really struggling. I was exhausted all the time, I felt like my heart was racing and I couldn’t get a deep breath unless I tilted my wheelchair back – it was really, really hard. I went to my doctor and we found out that somehow, without realizing it, I had unintentionally lost way too much weight.

I tried so hard to gain it back, but I just could not get enough calories in by mouth, especially with my chewing and swallowing restrictions! So after about a year or so, I knew that it was time to have the surgery – and I started to feel better within days. Now, I keep using it so that I don’t lose weight again – because my swallowing and chewing issues can make it hard to eat enough during the day.

Do you get all your nutrition via the feeding tube or via eating as well?

For me, it’s a mix of both! I eat “normally” during the day, or at least normally for me… I definitely eat smaller portions and less overall than most people. And then I’m hooked up to the feeding tube overnight to supplement what I ate during the day. I usually get 500-600 ml of formula while I sleep, which is about 600-720 calories. It’s really taken away a lot of the stress around eating for me – if I have a day where I don’t eat as much, I don’t have to stress about getting in more calories. It lets me really just enjoy eating again, which is great, because I really do love good food!

Is the formula inserted via a port like insulin?

So, I have a Mic-Key button g-tube – this means that I have a little “button” in my abdomen, and when I’m hooked up to the feeding tube, the formula goes through the button and right into my stomach. Since I use it overnight, it hooks up to a pump that slowly pumps the formula into my stomach overnight, rather than putting it in all at once (which is also something you can do – just not how I personally do it). I know it’s kind of hard to picture – this website has a good picture of the Mic-Key button in someone’s stomach! You then attach some plastic tubing and a formula bag to the button and through the pump.

Before I got the feeding tube, when I was in the hospital for something unrelated, I had an ng tube. An ng tube is one that goes down your nose and then into your stomach – it’s typically more temporary than the button. I haaaaated that one – I had so much trouble swallowing food with a tube down my throat! But the point is that there are different ways different types of feeding tubes work.

Do you only get formula through the tube, or can you do meds or special treats as well?

I mostly do formula only, though I’ve also done some liquid medicines in the tube, too. I’m hesitant to put other things in, because you have to be careful about not clogging your feeding tube, which is a thing that can happen! For pills, you have to crush them up super finely and then dissolve in water before you put them through your tube, and I’m lucky that the pills I take are small enough that I’m able to swallow them myself. And for special treats, again – I’m able to take them by mouth! But I know lots of people who do put lots of non-formula things in their tube without issues (even alcohol, ha!). But because I can still eat and drink by mouth, it’s not something that I have to do.

Are there restrictions on what food you can eat? I want to be thoughtful about event planning!

What a sweet question! For me, my food restrictions are based more on my chewing and swallowing issues (I can’t eat anything that’s too tough). But I don’t have any restrictions based on my feeding tube itself. I know that some people do, though – it can depend on what the reason is for the feeding tube. So as usual, I think the best thing you can do is ask about dietary restrictions and let people share, because it’s something that’s so different for each person.

Why the hesitancy to get a feeding tube considering how much it improved your quality of life?

I think it’s hard to explain the emotions that I was dealing with constantly before I got my feeding tube. Not only was I super emotionally fragile from being tired all the time, but it’s really really frustrating to feel like your body is out of your control. I was doing everything that I could think of to gain weight, and nothing was working. I have so little control over so many parts of my life – food, and eating, was something that I was used to being able to do on my own, without help. It’s hard to give that over – it was really hard for me to accept that this was another thing that I could no longer have control over. It was a huge mental hurdle – I was able to get over it, of course, but it was not easy.

And then there’s also the fact that it’s surgery! Because of my body and SMA, this had to be done invasively – they had to cut open my abdomen, and going through surgery and being intubated is risky – there’s always a chance that I won’t be able to be taken off the ventilator post-operation. And it did have an impact on my day-to-day life, too – I had to adjust the way that I was lifted and situated in my wheelchair, I had to get rid of clothes that no longer fit correctly, I’ve had to deal with stomach acid leaking and infections that have cropped up around the tube site. And it’s yet another thing that I have to deal with each day that adds time and logistical planning.

Like I said – overall, I know that it was the right decision for me. I’m able to live my life again without fixating on my calories and meals, and I can actually enjoy eating again. But that doesn’t mean that it doesn’t come with challenges, too.