Monday Morning Thoughts: Finding Exercise in Different Places, Answers to Some Questions About My Feeding Tube

IT’S. ALMOST. AUGUST.

Finding Exercise in Different Places

I find myself up and on the move through different periods of time during the summer. While it’s amazing that I’m able to be up and about, it does mean that sometimes my routine at the gym suffers. Unfortunately the gym doesn’t really move with me. So it’s important to find other means of exercise whenever possible to compliment traditional CF care (that is… since I consider exercise a part of my CF care). My girlfriend is big into hikes, so that’s kind of a new way for me to get the lungs pumping. We’ve done a few together this summer (with our puppy in tow of course). This past weekend brought us to a place, however, where we couldn’t have brought enough bug spray. If there’s one thing you take away from knowing me and reading what I have to say, it’s that I HATE bugs. I’d say, “it’s nothing personal against the bugs,” but that would be a lie. From there, though, my girlfriend and I planned a trip for the end of August. We’re going to tour the Civil War battlefields at Gettysburg and Antietam. Those will both be big time hikes for me, but I’m looking forward to the challenge and a look into our country’s past. My health has been nothing short of tremendous lately, so I’m hoping to take advantage of it as best I can.

Find some exercise in unusual places, it’ll go a long way!

Answers to Some Questions About My Feeding Tube

The feeding tube is like a mysterious, alien object that draws a ton of attention from onlookers (or potential users). Every 18-months or so I find myself answering questions about the device from the next wave of patients who may be finding themselves tube feeding.

Can I play sports with my feeding tube?

The answer is YES. There are few limitations that come with using a feeding tube, and playing sports is one of those things where it’s important to look at things using common sense. Initially the fear of limitations was my biggest concern, but I quickly realized I had over-dramatized what life would be like with a g-tube. If anything, my supplemental tube feeds have helped shape me into a stronger, more well rounded athlete. I play hockey, run, go to the gym, swim, and just about everything in between. Looking back at my life, though, I think playing football would have been impossible with my feeding tube – adding to the small list of limitations. The clutching and grabbing during tackles would have been a scary thing with the g-tube in tow. The only other limitation was I was given was to avoid “fresh” water – lakes, rivers and ponds. Fortunately that didn’t change my life at all. We only have salt water and chlorine in my parts.

Did the surgery hurt?

The surgery is much ado about nothing. It’s super easy and I walked out of the recovery room a few hours after the g-tube was placed. Once the pain medications wore off, though, the pain was horrendous. I’ve ever heard that some people claim the pain after g-tube surgery is worse than the pain experienced following a double-lung transplant. I have a hard time believing it, but who I am to doubt people who have gone through that? The pain definitely was debilitating, but it passed after a week or so.

What’s the worst part? 

The PEG tube. The surgery and what happens after is a bit different for everyone. In my case they placed a PEG tube before I could switch over to my button (seen in picture below). The PEG sucks. It’s like the worst thing ever. It’s an 8-12 inch tube that protrudes from the stomach and basically gets in the way of everything. It’s uncomfortable and a nuisance. I was told that I needed to have a PEG before switching to a button so we could allow the wound to heal. I told them I would rip the damn thing out if they didn’t switch me over to a button at the earliest possible time (empowered patient moment!). It’s been awhile so I forget how long I had the PEG before switching over, but it was no more than 6 weeks. Maybe it was even closer to four weeks. Either way, I was back in the GI office and fitted for a button the moment the damn wound was deemed “healed.”

Is it hard to use?

Initially, yes. The learning curve is steep. People liken it to IV therapy, but I think that’s a bad comparison. The similarities end after the IV pole. It’s so different from the rest of CF care. Most of the equipment is one time use and nothing needs to be sterile (seems easy!), but the equipment is finicky and there are a lot of moving parts. After the growing pains in the beginning, I’d go as far as saying that using my g-tube is the easiest part of CF care, but it comes down to the routine you build. The set up is a bit time consuming and monotonous, but cleaning the few reusable parts is super easy. The worst part is that it can get a bit messy if there is a spill… nothing a laundry machine can’t fix!

Is it for everyone?

No. The feeding tube is one of those things care teams LOVE to push on people at the first sign of malnutrition. In my case it was the absolute LAST thing we tried. It’s not one of those things that I think people should jump into without trying every trick in the book to put weight on (and maintain it). Ultimately it is another added piece to the routine, and requires consistent use. It’s not going to work if you aren’t able to figure out how to make it work for YOUR life. It’s going to make sleeping a more difficult task than it should be, it’ll change the way you poop and it’s going to take up more time throughout the day (albeit physical use during awake hours is significantly less than other treatments). If it’s something you can balance with the rest of your life, then go for it… if not, try everything else before jumping into the #tubie life.

…and that’s what I’m thinking about this morning!