I was terrified for a long time to have this surgery, but after it was postponed because of my low weight (see my Pre-Surgery Nightmare) I became eager to get it over with and hopeful that it would help.
At this point I was used to having abdominal surgery, although nothing can really prepare you for something this life-changing. I don’t remember much right after, only that I woke up in a private room, which was great, and that I was in pain, out of it, and unbelievably thirsty. I wasn’t allowed to drink water at all for a day and then for another few days only sips. They didn’t want my internal stitches to rupture, which I get, but it was torture for me. The G portion of my tube was hooked up to a drainage bag 24/7 at first so nothing would get past my stomach and mess up the stitches. I looked like some kind of science experiment, with tubes coming out in every direction. It was really hard to even get out of bed between the tube, the drainage bag, the IV, and oh by the way, I still had my PICC.
It didn’t fix itself. I languished in the hospital for almost a week and finally begged them to let me go home. I could still use TPN through my PICC even though my tube wasn’t working. The nurse gave me a quick demo on maintaining the site and the tube and (after about five hours waiting) I was discharged. You can read about my experience with my tube here (getting used it, learning maintenance, etc).
A few weeks after my unsuccessful surgery (well, it was unsuccessful in the sense that it didn’t give me a working feeding tube, they did manage to make a hole in my abdomen and stick a tube in it) I had an endoscopy to try to move the tube into my jejunum. It was really unpleasant. My GI specialist, who has a significant lack of bedside manner, did the procedure. The sedation didn’t work very well and I woke up in the middle with the scope down my throat. I tried to give them a sign that I needed more sedation by putting my thumb in the air and gesturing, which didn’t work but got me sternly reprimanded afterward by said GI specialist, Dr. S. He was actually mad at me for moving around and ruining the procedure, not apologetic for not giving me enough sedation. He told me if they couldn’t get this tube working I might have to have more surgery to put one in a different place. Needless to say I was really upset, my fiance was irritated as well. I haven’t seen Dr. S since then.
I hated the heavy, long tube, and after doing a lot of research I discovered there was another option – low profile tubes. This was another example of “if you don’t ask, you won’t know,” (my doctors had never told me low-profile tubes existed) which is a shame, because in my mind it’s the doctor’s responsibility to educate the patient on all available options – never having seen a feeding tube before, how would I know that there were different kinds? The one they put in initially was huge and stuck out about a foot from my abdomen (see picture above). No matter what I did it left a huge bump under my clothes. It was heavy and pulled on me painfully. I had to use all kinds of tape including a special adhesive loop that I could stick on my abdomen and leave for a day or two, which gave me hives, ripped my skin off, and required industrial strength adhesive remover that would also remove my nail polish if it got on my nails. So when I found out about low profile tubes, or “buttons,” I was excited, and I convinced my doctor to order one.
On March 24, a month after my surgery, I went to the Interventional Radiology Department (IR) to get my tube fixed. They sedated me, removed the old tube and put in a new low-profile tube. This time they were able to place the tube in the correct path so that the end rested in my jejunum.
I don’t remember the procedure itself. I was nervous and wasn’t allowed to drive home because they were sedating me, so my mom took me and they gave me Xanax beforehand. An hour or so later, I came to in recovery with my new, presumably working, low profile MicKey GJ button. After 24 hours I was able to remove the big bulky bandages and was pleased to see a small clear and white port, about an inch and a half long, with a G opening and a J opening, both covered by plugs. It came with attachments. The feeding attachment for the J port was thin and had a Y port at the top, one for feeding and one for medications, with plug closures. The G attachment was a thicker open-ended hose that I could attach to my drainage bag. I can’t tell you the relief, not having a big heavy tube hanging from me. Now I could just feed overnight and detach the tube in the morning. You could barely notice the port under my clothes.
Here’s a comparison of two of my X-Rays showing correct and incorrect placement:I now had a functioning GJ tube, a month after the surgery. I started using it immediately. I was pretty sick after the IR tube change because they injected contrast dye into the tube so they could see it better (they use a live X-Ray called a fluoroscopy). Now I know why – I’m allergic to any kind of contrast dye. It took about a month for me to get the process of tube feeding down, and I had to switch formulas because the first kind they gave me, Jevity 1.5 calorie, made me really sick, but after I switched to Isosource 1.5 calorie I felt better.
I started gaining weight, slowly. It took me about six months to reach my before-illness weight. Over later and I’m still waiting to regain my strength and feel better, but I do have more stamina, I look much healthier, and I’m no longer starving to death. I can do more – even go to the beach! Things aren’t great, but they’re better, and I’m so grateful for my tube – it saved my life.