One Year Later

Oh, how much I have learned since June 1st of last year. That was the date on which my first enteral tube was inserted. If I had known then what I know now, I would have had a much easier year. (It’s amazing how much better hind sight is, isn’t it?) For one thing, back then I had no idea what anyone was talking about, and hadn’t learned about different brands and models of tubes. I took my first surgeon’s word for everything.
That first tube was a disaster. It didn’t even have a cap attached, so I was instructed to cut off christmas trees from my Kangaroo bags, tie a knot in the excess tube, and then insert it into the port on my tube. Every time I moved or took a breath, the christmas tree popped out. I leaked all over every piece of clothing I owned. I once got on the subway at 135th St in Harlem. As soon as we pulled out of the station, the tree popped out, and I couln’t find it on the floor of the subway car. Not that it would have been too smart to reinsert it, but it would have been better than riding the 10 blocks on the train with my finger over the opening, and then riding 10 blocks in a cab with my finger over the opening to get home to change clothes. My sister, who was with me last year during that initial surgery, and has been my primary support person ever since, called the manufacturer. Turns out that that tube was made specifically for people who are bed-ridden and remain attached to a drainage bag 24/7. I was too mobile for that tube.
I complained enough that the tube was replaced. Since I already had a stoma, Interventional Radiology was enlisted to put in a new tube. I hope I don’t offend any IR people out there, but the ones I dealt with obviously went into it so they wouldn’t have to deal with too many patients; they were the surliest, rudest people I have ever met. By this time, I knew enough to ask for a tube that would allow me to be mobile and had a cap attached. The initial surgeon, the IR people, and my fabulous Nutritionist all consulted with me in the room that Thursday night. Friday morning the new tube was put in place, and when I came to, it was a completely different arrangement than we had agreed upon the night before. This new tube, like the previous tube, was a J-G tube, but the ports on this one weren’t molded as one piece. It looked like it was built out of Legos. One port jacked into another port and on into the tube. The inner tube, the J portion, initially worked fine, so I didn’t think about the fact that it was kinked up inside the outer tube (which, fortunately, was clear). About 3 hours after I started feeding, the christmas tree popped out and would never stayed attached again. In order to straighten it out, I had to pull the J port out of the G port to unkink the J tube. WHen I did that, guess what happened? I started leaking stomach fluid from the G port. When I complained to IR, they said I should learn to deal with it, and put a dish under the tube to catch the drips while I was feeding. I went ballistic!
I waited until Saturday morning to check myself out against medical advice, to at least consult with my Primary Care Physician, whom I adore. I checked out of one hospital, and hopped a cab to another extremely famous hospital ranked number 7 in the country for GI problems. The Resident in the ER didn’t want to admit me, but the Attending consulted with a GI specialist, who advised her to check me in. On Monday, and new tube was inserted. When I came to, I noticed that something was drastically wrong. My previous tubes dangled out of my stomach for about 8-10″. This tube’s ports were right up against the stoma, stick straight out. It would have been impossible to wear a shirt like that. Anyway, they started feeding me, and I threw up 4 times. At about 10:30PM, IR at this new hospital took an x-ray, and sure enough, the tube hadn’t been inserted deeply enough, so the J portion was in my stomach, which is paralyzed with gastroparesis, and all the formula was going there. The next day, the tube was fixed.
That tube was so miraculous to me. Once it was finally placed properly, it worked perfectly. I could drain through the G tube and feed through the J tube, and more importantly, I could go back to work. That tube (Kimberly-Clark, my heroes) was inserted at the end of July. I went back to work on Aug 9. By this time, I had been out of work 10 weeks.
One day in October, the balloon disolved and the whole contraption slid out ( I never felt it) right onto the floor at work. I said to my boss calmly, “Uh, I need an ambulance. Disinfect. Don’t touch.” I wanted to go back to the hospital that installed it, but I work in the bronx and the ambulance wouldn’t go to Manhattan. I was taken instead to a hospital who looked at the tube I was holding (I brought it with me to show what I wanted) and said “Duh! We dunno what to do. Duh!” They inserted a Foley catheter to at least keep the stoma open, and again, I was in a cab to the good hospital in Manhattan.
Unfortunately, it was Friday night, and they wouldn’t keep me, so I went home with a Foley that was clamped shut with a metal clamp. Monday morning, I was at work when the both the tube and the stoma sprang a leak. I was spewing acid from around the Foley, and the clamp had popped a hole in it, so I was spewing acid from there as well. I took a cab (I could by a car for what I spend on cabs) and went back to the good hospital. I spent all day in the ER waiting for the GI doctor who had followed my case before, when the good tube was inserted. After a few hours, I was screaming in agony. Turns out that the acid was buring my skin. And every time I moved, or went to the bathroom, or basically took a breath, more acid would come out. The gauze was always soaked, and nurses weren’t to quick to change it. I still have scars from those burns, and they were in the exact shape of the gauze. I’ve been clean and sober for over 5 years, and I hate downers anyway, but I was begging for percoset.
So this GI doc comes at about 8:30pm and decides he doesn’t want to give me the same tube, even though that’s what I asked for. He decided balloons disolve too quickly. What I really needed was a bumper tube! On the inside was a bumper rather than a balloon. SO without and anasthesia or anasthetic, he whips out the tube and jams it into my stoma. Echoes of that scream are all the way to Saturn by now. Aliens will be recieving that scream.
I went home that same evening. The next morning, I go to hook up my pump set and the J-port comes off in my hand. I HADN”T EVEN HAD IT FOR 24 HOURS YET! SO I looked closely and it was more Legos. Each port was a separate piece. I went ot his office, and his response was to crazy glue it back together. I did that but crazy glue doesn’t stick to silicone too well, so a week later, it fell apart. I didn’t even bother calling him back. I stopped feeding at that point. I couldn’t deal with the tsuris. I made my nutrionist aware of the problem and we agreed I needed a tube like the one I had before. This was when I started my internet research in earnest.
I went to visit my sister in Washington, D.C. at Thanksgiving and while I was there, I threw up one night. I started choking on what I thought was a green bean and when I reached into my mouth, it turned out to be the interior end of the J-Tube. The port might have fallen off but the tube was still there. At the hospital in Virginia, the GI guy simply cut off the exterior end of the tube, removed th J-tube leaving the G-tube in place, and capped it.
When I got back to NYC, I checked every medical supplier on the internet. I looked at every photo until I found a tube that looked like the one I had that I liked. Then came the work of finding out how to get it. K-C wouldn’t sell to me directly. Coram didn’t want to pay for it. Insurance wouldn’t cover it. Eventually, I pursuaded my Case Manager from the insurance company to pay for it. They even agreed to pay for 2 so I could have a spare when the first one fails. Coram (bless their hearts) ordered them and I got them in December. Meanwhile, since I was feeding enterally, I had PICC line inserted.
The Picc infected with a Staph infection. The Hickman that replaced it infected with candida, which spread throughout my blood, while I simultaneously had enterococcus in my blood. My fever shot to 106.5. The antibiotics killed the good bacteria in my intestines so I developed C.Diff. Finally, at the end of February, I was well enough to have surgery to install my fabulous Kimberly-Clark MIC Jejeunal Feeding tube (ref 0200-16). It has worked perfectly (kinehura) ever since. After missing another 10 weeks of work, Everything at the moment is copacetic (aside from my hemoglobin being down to 7.4 and the coumadin I’m on because I had a deep vein thrombosis isn’t being absorbed into my body). I am fully prepared for this tube to wear out.
I strongly urge everyone, both patients and support people, to educate yourselves on what products are out there and find what works for you. Learn the names of the models and makers. Learn about things like what “french” means (it’s the diameter of the tube). Always remember you have to right to approve ahead of time equipment that is being installed in your body; if your doctor doesn’t like you asking too many questions, he’s the wrong doctor. After a procedure, if anything doesn’t work right, or doesn’t feel right, make your doctors aware and nag them until they fix it. They don’t have to live with it for 24 hours a day, 7 days a week, maybe for the rest of your lives. I’m lucky in that I have a great Primary Care Physician, and a Nutrionist (he’s also an MD) who knows almost everything there is to know about enteral and parenteral feeding. He’s the man who referred me to Oley last summer. I wish I could persuade him to have more involvement in Oley, but then he’d have less time for me. Stay well. Keep pumping. And never give up.