[Image shows: 3 spoons on a laptop keyboard with a photoshopped piece of paper with a paper clip, on the paper says “NJ Tubes and Ileostomies: My Experiences with Both” and in the bottom left corner it says “Grace Shockey Photography” with a clipart camera]
I was asked “Would you consider doing a video that explains your current feeding schedule and how like the NJ tube and ostomy work? I’m super interested even though that might be weird but I figured I would ask. Even a text post would be cool!”
I’m no good on videos though. But I am here to answer those questions! I typically sleep in most mornings which means I don’t start my feeds til almost 10am, but since I run them at a fairly slow rate, it works out just fine.
[Image of a feeding pump, feeding bag, and two bottles of formula and my photography emblem in the bottom right corner. The color scheme of all the medical stuff is white, a turquoise teal sort of color and red.]
My set up each morning is the same: One pump, one bag, and two bottles of extremely gross smelling formula. Oh and my backpack that I carry my pump and bag in.
[Image 1 shows my pump laying in front of my small black backpack which has pins and patches. An R2D2 patch, a Scottish Thistle pin, a BB-8 pin, a “Can you not” pin, and a pin that is spelled out in ASL that reads “Bite Me”. Image 2 shows how the pump fits into the bag and looks once it is turned on. It is at 70ml an hour, the photo is black and white minus the red tip of the tube and the red letters on the pump that read “EnteraLite”]
I clip in the feeding bag to a clip inside the small backpack that the hospital gave me back when I had my NG tube. From there I hook it up to the pump and thread the tubing through a slit on the side of the backpack. With formula I typically only run it at 55ml or 65ml per hour, or else I get nauseated, once I finish my feeds though or if I am not tolerating them I will run water which I can tolerate at a higher rate.
So I typically try to do 500ml the first half of the day, a little bit of water in between (since I ended up getting pancreatitis while on NG feeds from too much protein and not enough water), and then another 500ml of formula throughout the night. This leads to me being hooked up to my pump a total of 23 hours. I had to do math to come up with the exact amount, since I run the water at a different rate than the formula.
When my doctor first mentioned doing NJ feedings I was a bit reluctant, because I thought if I had the tube in my jejunal and also had an ileostomy, I didn’t imagine the formula would stay in my system long enough to make a difference. And I couldn’t find anyone else who had an NJ and an ileostomy, I remember asking on Crohn’s support groups, Gastroparesis support groups, Tubie support groups, etc. Nobody ever really got back to me about it. So I had no idea.
[Image shows from left to right: A purple pair of scissors, a bottle of Cavilon barrier spray, ostomy powder, below it there are cavilon barrier wipes and adhesive remover wipes, then back to the top there is the ostomy barrier still in it’s seal, the eakin seal ring I use and the actual ostomy bag in a tan colour]
My doctor didn’t seem worried about it though, and I trusted him. He told me at this point that really any nutrition is better than none. He didn’t think it would go out of my system too fast.
So we went ahead, he started me off at 82ml an hour and just running it from 6pm to 6am, which was awful because I was up all night nauseated and up all night emptying my ostomy bag because it did move through my system really quickly at that rate.
I lost my first NJ tube after getting kidney stones and throwing up so much I managed to push the tube from my small bowel up into my throat.
The second tube I messaged my doctor through MyChart and explained I wasn’t able to tolerate at 82ml at all, and so they told me to start at 32ml and increase by 10 daily as tolerated. They really wanted me to get up to 82 ml an hour but I get the same amount of formula in me, it just takes longer.
Plus by running it at the slower speed I also have made it so I don’t have to go empty my ostomy nearly as much. Overall it helped a lot, I’m not sure if I have gained any weight yet in regards to it, but it definitely has helped a little with not feeling as light headed and weak, although with the Crohn’s flare it’s also hard to tell what is getting better and what is getting worse.
It’s a frequent guessing game when you have multiple illnesses because when you have one symptom that could be caused by any one of the illnesses you have so you have no idea what to treat exactly.
But overall my experience with my NJ tube and ileostomy has been going very well so far. Especially once I adjusted to the routine again which does take some time but before you know it, it becomes a new normal and you adjust. 🙂
[Image shows me in a purple sweater in a living room, with red hair, glasses, an NJ tube with my knees up close to my chest. My expression is rather bland. ]