So it’s been just over a month and a half since my surgery and I can officially say I am fully recovered. It went really well, but it was a tough recovery. They placed a low profile AMT G-Jet button, which was the absolutely best case scenario. They also did a salivary gland biopsy to check me for Sjogren’s. Fun fact: your lip is completely numb (like after a dental procedure) for up to two months after the biopsy. At least I don’t have to chew very much! Anyway, I have some pretty bad hospital anxiety after some traumatic experiences back in May, so that part was tough. Also, ‘oral’ (through my J tube) pain medications didn’t work very well in comparison to the IV ones. The one they normally do had no effect and the one that ended up working didn’t last for very long. The surgery was on a Tuesday and I was released on Thursday, so not too long of an admission, but longer than expected. I don’t have too many more details about right after the surgery, it’s all still a little hazy. I do know my stomach went into a bit of a worsened shut down afterwards. I went from being able to eat 600-700 liquid low fat low fiber calories a day to 100-200. I am working hard to get back to where I was, though. I am at 500-600 right now, so I am really proud of that.
I love going out in public and having no one stare at me. It’s kind of awesome. I used to (with my NJ that I had for 9 months) be used to having people just staring at me everywhere I went and asking the rudest questions. (I need to update my list!)
However, this new tube is taking some getting used to. I was used to NJ land: change tape every three days, flush through med port every six hours, pour food into bag, turn pump on. That’s basically all there was to it. And one of my NJs lasted over three months, so I WAS fastidious.
Now I have two extensions + cleaning and replacing extensions, meds through the tube (which is more work, but worth it), changing the dressing around the tube and cleaning it and skin around it, venting/draining, everything discussed above, daily taping, more syringes, basically more stuff, believe me, the list goes on!
I AM getting a system down, which leads perfectly into the second portion of this post!
I am going to talk at length with pictures about how I organize my medical supplies. This includes how I organize my time dealing with medical stuff because (and I forgot to mention this!) I started high school a bit over a month ago! I am doing an online public school and currently tackling seven credits including chemistry and biology. I’m working hard to not get behind.
First things first, I always push as much medical stuff as possible to the evenings or weekends. This is because I am so utterly exhausted by the evenings that I can’t do schoolwork well so I have to use as much of my mornings as I can. Here’s my to do list in the mornings:
- Flush J tube
- Disconnect J tube extension
- Change sponge + clean around tube
- Reconnect J tube and connect G tube (includes taping)
- Take morning meds (I push as many as possible to the evening, I also pre measure my morning meds (there’s only 3) in the evenings to save time
- Make tube food if necessary, otherwise get it out of the refrigerator
- Fill bag, load with pump into backpack
That’s about all for the morning, and it takes under a half hour, which is really nice for optimizing my morning time! However, it does lead to a lengthy (over an hour and a half) nighttime list. Here’s what I do at night:
- Flush G + J extension
- Remove both extensions
- Clean extensions thoroughly (my patented method (not) is rinsing with hot water, cleaning the outside with goo gone because they get tape residuals on them, rinsing with soap and hot water, flushing it with straight white vinegar and letting it sit for five mins, then w/ out cleaning the vinegar out flush multiple times with baking soda water. The chemical reaction is mild because the baking soda is diluted, but something about doing this cleans the residual gunk out really well)
- Replace sponge and clean around tube
- Reconnect G + J extensions (includes taping)
- Clean syringes
- Measure and take night meds
- Measure morning meds
- Count out calories for the day to calculate how much I have to run overnight
- Make overnight mixture (this includes my regular tube food, green juice, coconut water, collagen powder, water, salt, and multiple meds that can’t be given in a bolus)
- Make tube food for next day
- Set up overnight mixture
- Clean dishes, countertop, food scale, etc
- Do all normal person stuff (brush teeth, etc.)
- Clean up room and bathroom (they get incredibly messy in just a day with medical randomness and school)
Also, throughout the day, I vent air out of my stomach and that takes about 5-10 minutes each time. Every week I have to replace a whole litany of supplies. I always do it on Sunday. It is a lot easier to remember if there is only one replacement day.
I now have these systems memorized, but when I was developing them I would write everything I had to do down and arrange it in a good order. For example, it would be silly to remove the extensions and then need to take meds because it would require a lot more finagling.
The way I develop them is something I call ‘cleaning protocols’. They are incredibly simple. It has an area, for example, the medical area in my bathroom. It has different times (every morning, every night, every Sunday, every home health shipment) Then you write down everything you need to do on the appropriate field. I shared my morning and evening ones for my medical area above. I include deeper cleaning on the weekly and monthly (every home health shipment). This keeps everything super clean, organized, and on track pretty consistently. I laminate them and check things off with wet erase markers until I have them memorized. Here’s a picture of the cleaning protocols for my room:
I am going to move on from cleaning and medical tasks and show some pictures of my supply organization. It’s quite elaborate, if I do say so myself 😀
This is my main storage area. It is a Pax from Ikea. It holds about 20 Kate Farms Peptide, my Cromolyn (it’s space consuming), sparkling water/green juice/coconut water, bags for food, farrell bags, extra syringes, extra sponges, alcohol wipes, adhesive remover, extra extension sets, extra clorox wipes, etc.
This is my sink. I use the blue sponge for cleaning dishes and the yellow sponge to clean the sink itself and counters.
This is my main supply area. It holds the things I use multiple times a day and need to grab quickly. From the bottom left: Adhesive remover and alcohol pads, syringes (side note in regards to syringes: I took a jar filled with marbles and stuck big straws in it. Put the main part of the syringe (not the plunger) on the straws and they dry a lot easier and tidier.), q-tips, syringe/tubing caps, extra partial meds, colored stickers, and sponges.
This is a second supply area that’s a little less medical. I have a pencil cup with scissors, pencils, highlighters, etc. I also have some medical tape with some sharp scissors to cut it better and a dog hair roller because I’m allergic to the dog so if I get dander on my clothes I need to take it off…obviously. I’m not sure that needed an explanation.
This is a vinegar rinse I use to keep things clean. It is a 1:3 ratio of vinegar to water and I change it weekly.
Extension cleaning supplies. Vinegar and baking soda water.
These are my drying racks. The smaller one (left) holds things like my cup for flushed and medicine cups. The big one holds large/less used dishes. I use my drying rack to store the dishes because I only have enough dishes to not quite fill the racks and I don’t have enough storage space to put it all away. Plus, putting it away is time consuming!
This is my medicine drawer. It holds medicine. Fun/useful hack: Take a pill minder you aren’t actively using and fill each day with one type of pill each. Then put a sticker on it and label it. This is easier because it consumes less space and you don’t have to open and close lids.
Tape, tube clips, etc. I really like grip loks for holding my tubes up. I support them with paper tape (only tape tape one I’m not allergic to, but I used to like transpore). I don’t know why tegaderm is still in there, I’m allergic to it now.
This is like my counter top. I have a brita water filter in the refrigerator that I fill the pitcher with. Hand sanitizer because sometimes I need to really quickly clean my hands. Using a scale is so much easier than using measuring cups/spoons. I just know how many mLs to put in and it’s more exact anyway. I use blender bottles to mix my tube food up with. I have to add a lot of salt and some meds and they have a little whisk that gets it really well incorporated. I also water it down because it is really thick and I don’t end up getting enough fluids with the densenesness. This is a largeish nightstand that is wood, so I put an Ikea plastic desktop cover on top (kinda like a placemat but it has grippy things on the base so it doesn’t slide around. It’s also quite large.).
This is a towel holding rod (not sure what to call it!). I have paper towels on the rod (I think that’s the most creative idea I’ve come up with, it’s very convenient.), Clorox wipes, and a VERY multipurpose washcloth. I use it for spills (yes, the yellow stuff happens to be intestinal fluid. I change it daily.), wiping countertops down, etc.
The trash area looks horrible but it’s really necessary. I put it in the weirdly large bathtub I never use. There is trash, compost, plastic recycling, and commingled recycling. They are all necessary, or otherwise I spend hours every week sorting trash. We believes strongly in recycling/composting (did you know you can compost paper towels?!?), so this is a good system for me, and I have tried MANY.
Last but not least, you have my awesome and tiny mini fridge. I actually LOVE it. It is down the hallway from me because I can spend an entire day hardly moving in my small spaces, so it forces me to walk around. It has the brita filter mentioned above, sparkling water, juice, tube food, meds, oral ‘foods’, etc.
If you made it all the way down here to the bottom of this long post, I want to say I’m impressed. I am a bit of a rambler sometimes.
I hope this post is to you what I needed nearly a year ago and first got my tube. I was desperately in need of some ideas so if this helps even one person, that would be awesome!
See? I rambled again.