I was really surprised with the lack of information I received when I was discharged with my tube. Here’s everything I’ve learned so far, hopefully someone will be helped by reading this.
The first tube that my surgeon placed was a standard long tube, which I hated. It was so long and heavy and was very difficult to tape to my skin. I didn’t know low profile tubes existed until I complained about how big mine was during one of the procedures to try to advance it, and one of the techs told me about them. I pushed my doctors hard, and a few months after the surgery got a low profile Mic Key GJ. It was so much better! So much more comfortable, easier to use, and barely noticeable under my clothes. After about a year and a half I got an AMT G-Jet to try to stop the problem I was having with migration. It didn’t solve that problem, but I love my G-Jet!
Cleaning – I was told to clean the stoma in the beginning with hydrogen peroxide mixed with saline. After I few weeks I started using just saline. I was really nervous about infection but it seemed okay to just use regular soap in the shower and then rinse with saline. Now I use sterile saline mixed with tea tree oil (about 10 drops per cup of water), which has antiseptic properties.
- Dressing – I tried to leave it bare but it always oozes a small amount of discharge, and when the granulation tissue gets bad it often bleeds. In order to keep it dry and prevent it getting on my clothes, I use a drainage sponge and paper tape. At first I just used the 4×4 sponges my home care company sent me. After a while I inquired and found out they make 2×2 IV drainage sponges, so now I use those and they’re much more comfortable. I use the smallest amount of paper tape possible because my skin is so sensitive. Before I put on the drainage sponge, I use diaper rash cream (zinc oxide) to protect the skin around my tube, and Stomahesive Barrier Powder to absorb any liquid.
- Tape – My favorite medical tape is 3M paper tape. It does irritate my skin, but I have MCAS – everything irritates my skin. At least it doesn’t give me hives! It tears easily off the roll and doesn’t leave residue on my skin.
- Granulation Tissue – This became a painful problem for me, and I honestly haven’t been able to do much about it. You can read more about it in this post.
Tube Care and Usage
- Clogs – TL;DR – use warm water and baking soda. It took me a long time to figure out how to unclog my tube. It would clog maybe once a week. I asked doctors, nurses, my home care company, and the mostly-useless home nurse I was assigned for tube care. I got a few suggestions – pulsing the syringe while flushing the tube, flushing with Coca-Cola, cranberry juice or carbonated water. I tried all of these, using Coke worked most of the time, but sometimes I would be trying to fix it for half an hour, freaking out that I’d have to go to the hospital to get it fixed. I also used a little syringe attachment that came with my tube if the clog was in the head (external part of the tube).
- What finally worked was really warm water with baking soda. This is seriously a miracle fix, when flushing with this mixture the clog clears in a few minutes. I also started flushing with warm water every day instead of cool water, that helped a lot too.
- Tube Extensions – I have two kinds of tube extensions, one for the G port and one for the J port. I used to hook up the G tube extension when I wanted to drain my stomach, if I was feeling really nauseated or wanted to make sure my tube hasn’t migrated into my stomach by checking to see if there are tube feeds in my stomach. However, I haven’t used the G portion in almost two years. My GI doctor told me not to if I could possibly avoid it, because it interferes with my already impaired digestion. I had already basically stopped draining my stomach by then anyway, because I didn’t feel like it helped. I hook up the J tube extension to feed. At first I had trouble figuring out how to flush the J portion when I hooked up. If you just hook up the extension and then start to flush water through it (or start feeding) you end up pushing a lot of air into your intestines. That’s not as big of a deal as with TPN, but it can make you uncomfortable. If you swallow air, you burp it out, but in this case you’re injecting air directly into your small intestine and it can’t come out as easily. I tried to get my useless home feeding tube nurse to help me with this but she had no ideas. She actually told me she had never seen my kind of tube before! So finally I figured it out.
- With the extension detached from your tube, use a syringe to flush water through the tube. With the syringe still attached to the extension, clamp the extension with the hose clamp that’s attached to the extension, then attached the extension to the feeding tube. Now you have an extension filled with water attached to the GJ tube. With the extension still clamped, remove the syringe and refill it. Attached the syringe and unclamp the tube, then flush it. Repeat as needed. Once you’re done flushing you can clamp and plug the extension or just attached it to the feeding bag.
- Finding Medical Supplies – I was discharged with a drainage bag and some other supplies, but once they ran out I didn’t know what to do. I was able to get some of them through my home nursing company, once I asked. The others I got from Byram Healthcare. You have to get a nurse or doctor to call them and set up the initial account but they can turn it over to you so you can order supplies online or by phone. Again, this was something I had to ask several people to figure out; I didn’t even know such companies existed. They now supply me with saline, drainage bags, hydrogen peroxide, wound care supplies, pretty much anything I need except the tube extensions. Once I got my low profile tube I read the manual which said I needed to replace the tube extensions once a week, except I was only given one of each. Byram didn’t supply them. My home nursing company said they could but they needed part numbers. I finally got the information from Interventional Radiology and gave it to the home nursing company, and now they supply with the extensions with every tube feed delivery. Once again I was surprised and dismayed at how much work it took to figure all of this out and how almost everyone I talked to had no idea what I was talking about. Everything I need takes several phone calls to figure out.