8 Things I Recommend For New Tubies

This post isn't meant to substitute actual medical advice from a professional. 

So it kind of seems like there’s a lot more people recently that have made the decision to get their surgical feeding tube. I got my surgical feeding tube back at the very end of March. Between then and now I’ve had several other hospital admissions and generally other things go wrong. I wanted to share some things that I’ve found very helpful after being Post Op, and what I use for my feeding tube just in daily life.

When I was freshly Post Op the pain was excruciating, it’s some of the worst pain I’ve ever had in my life. I’ve had a lot of surgeries, so I feel like I’ve experienced variety of different types of surgical pain. The only thing that holds a candle to this pain is my Septoplasty, which currently is the second most painful surgery I’ve ever had. But through all this feeding tube pain I’ve learned a lot. So my goal is to hopefully help others with this post, so here we go!

• Toilet Safety Bars: So one of the #1 things I recommend to get before you have your surgery is to get Toilet Safety Bars that go around your toilet. Post Op it’s going to be really hard to stand up and sit down on your own but this will make it a little easier, it won’t be painless but it’ll help. It also helps you have just a tiny bit of independence too. I thought it was kind of ridiculous to use it, originally we got it for my grandma but she didn’t want it so we just kept it anyway. But it came in handy for when I had to go to the bathroom at night, so I didn’t have to call my mom at night to come help me.

• Pain Meds before a dressing change! You may have a small amount of bile coming from your feeding tube site, this is normal. Though in the beginning when I got my tube, I actually had a lot of drainage. As time goes on and your stoma heals you should have less drainage but it just depends on the person. But fresh out of surgery, dressing changes are one of the most painful things my mom had to do for me. So try to take pain meds around half an hour to an hour before dressing change, but it really just depends on how you metabolize medicine.

• Muscle Spasms: If you’re younger, you probably still have some muscle tone in your stomach which will lead to spasms. Avoiding using your stomach muscles to prevent those from cramping will lead to straining your back muscles causing them to spasm. Really in this case you can’t win against the spasms. If they get really bad maybe consider asking your doctor for a muscle relaxer prescription. Other options would be to try a heating pad on your back and heat near (but NOT on) your feeding tube site. Depending on your pain level, you may be able to do some gentle stretching or have someone rub your back. 

• Pointy Q-tips: Pointy Q-tips are really handy for cleaning the edge of your stoma after showers or during dressing changes. I prefer the pointy ones because it seems like they don’t leave as many fuzzies behind as regular ones.

• Blue Tape vs Clear Tape: I personally have a severe adhesive allergy so I usually react to all tapes and tegaderms. Just some tapes and tegaderm cause a worse reaction than others. When I was at the hospital getting my surgical feeding tube, the nurses showed me Nexcare Sensitive Skin Tape. I just call it blue tape for short, I actually don’t react to this tape, which I found surprising, because I have a history of reacting to things that are supposed to be hypoallergenic. I think it holds pretty well and I like it, it also doesn’t leave any sticky residue behind.                                        Recently I had to use clear tape to tape down my extension set because I didn’t have any blue tape on me at the time. By the time I got home to switch back to Blue Tape there was sticky residue all over my extension from the clear tape. I couldn’t get it off and it ruined it, I tried rubbing alcohol, lemon juice, citrus essential oils and nothing got the residue off. I also react very badly to clear tape depending on how long I have it on my skin. if I have it on my skin for a short time I’ll have just mild welts and itching, but if I have it on for a long time it can potentially eat my skin and cause bleeding sores.

• Tubie Pads: So because a small amount of bile will leak out of your stoma most of the time, generally you would use a split gauze to soak it up so it doesn’t irritate your skin and cause problems. But you could also use or make your own tubie pads. They’re a circular piece of fabric with a snap on it to snap around your your feeding tube. Then when you do the laundry just throw the used tubie pads in a garment bag and toss them in the wash. I like using these because I generate a little less trash that way and I just find them to be more comfortable than split gauze. But I do recommend that you use split gauze after tube changes and when you get granulation tissue burnt off. I’ve noticed that more bile comes out of my stoma during these times and it's easier too just throw away a split gauze if things get really messy. I get my tubie pads off of Etsy, my favorite Etsy store to get tubie pads is a shop called 2littletigers. I really like them because they have a wide variety of fabric designs. They also have very soft backing fabric options so they don't irritate my skin and make it sore.

• Floss Picks: So if you have a button/extension set you know that after awhile, toward the end of a extension set’s life it starts getting buildup in it. Especially in the part that screws into your button. Sometimes forcefully flushing the set with warm water doesn’t get it all out. I’ve learned that floss picks are the perfect size to carefully scrape out the build up without damaging the set. 

• The Benepod: When I was attempting to recover from my surgically placed feeding tube, my pain wasn’t taken seriously at all. My surgeon thought that tylenol would be sufficient enough to deal with my pain and said I was able to be discharged that same day after my surgery. Though in short as I was coming around from anesthesia, I was in a lot of pain and screaming so the Anesthesiologist had to sedate me with Fentanyl and Haldol. My surgeon still didn’t take my pain seriously, but gave me a very tiny pain med prescription. I had to end up trying to deal with some of my pain alternatively, so thus enters the Benepod. It’s a device that you put on or near the site of pain and it becomes hot and cold at the same time, and confuses your nerves and the way you process pain. It helped some for me, and I’m really grateful for it. If you want to know more about it, click here for my blog post about it or here for the Benepod website. (While my original post about the Benepod was sponsored, I am not being sponsored again to mention it here)

I also recommend that you sedate and/or distract yourself. If you can, just take Benadryl around the clock and try to sleep through the worst of it. If you can’t sleep, find some really engrossing TV shows to watch to keep yourself distracted. Audiobooks could be another good distraction if you’re too tired to read a real book. If you just got your surgical feeding tube, well all I have to say it’s going to get worse before it gets better. But once it starts healing and doesn’t hurt as badly, you’ll see how much better it is than a NJ/NG.

Stay strong my fellow Tubies!

This post also contains affiliate links, I've linked to things that I have personally used. This post is not sponsored.