Tube feeding... what can I say about it? Not very much because I've never experienced it. But many of you have, so send your tube stories to me for posting in this section to make this section grow.
From Julie: When I first got sick with my Crohn's disease I really wasn't sick with it at all, but over the months I became sicker. I was never a really small person so when I dropped 25 pounds I was seriously sick. It didn't take me long to be diagnosed. When I first learned about my treatment options I was not very happy, The options were tube feedings for 4 years or Prednisone. Being only 13 at the time it seemed like the doctor was speaking a different language. I was allowed to have two weeks to decide if I wanted the steroid treatment or if I wanted to go for 4 months with no food, only having tube feedings to supplement. It seemed like every day I changed my mind, but eventually I chose the tube feedings. I was admitted to The IWK Grace hospital for Children and put in the care by parent unit. My mom put down my tube. This was a very traumatizing experience, it was nothing like I had imagined. The set up for the tube feedings seemed to take for ever, it was a very old system. We had to fill empty unused plasma bags to put to formula in so that I could carry the feedings to school, then they had the most terrible looking vest to put the plasma bags in, the pump was little and square and you needed a screwdriver to open it. The process was hard; it took almost and hour in the morning and and hour in the evening to clean and set up the equipment. Going without food was hard, I used to lick chips for the taste and I used to eat one little square of a Oreo bar a week. I was originally told that i would go without food for three months but because I wasn't responding to treatment it turned into four and a half months. I was then allowed to eat a very limited diet which I enjoyed very much, Rice Krispy treats became my best friend, and I actually enjoyed rice and chicken again. I gained about 20 pounds which was goods because at age 13 i was 5 feet and weighed 90 pounds, I grew 4 inches. I had amazing amounts of energy and actually had the energy to do things with my friends. Now it's three years later, the tube feedings didn't work to help my Crohn's but it helped me gain weight. I'm am back on night feedings by choice. I can now put the tube down my self, I do it every night. They now have a better system which takes about 5 minutes to get set up. If anyone every has to look at this as a treatment, it's really not all that hard, it just takes the commitment to do. If anyone has any questions feel free to write me at fatcat7@gurlmail.com.
From Brian: I have had a few un-nerving experiences with tube feedings. My first experience with it was two and a half years ago. I tried it because it was one of my options and it did the trick. I was on a liquid diet for three weeks with 40mg of Prednisone and by the time I finished I felt awesome. After that the doctors wanted me to put on a few pounds. I was 16 and roughly 5 feet tall and 105 pounds. I was doing it off an on for over 6 months. Then I had a disgusting experience with it. I went to take it out in the bathroom and I coughed. Before I knew it my gag reflex kicked in and the tube was sticking out of my mouth. That was the last straw. I have never used it since. The good things is though I learned to forcefully drink down the boost. It helped when I was on a liquid diet for 3 months and all I could drink was boost and water. Now, my situation is a little different. I am 5'7 and a 170 pounds. I can't run as hard as I used to but I hit the gym even harder. The forceful eating habits have helped me to be able to put on mass and I am almost a 100 %. I'll get there soon, but as all you G.I. sufferers know, there is always another hurdle that needs to be passed after you pass the original one. Thanks for listening.
From Anna: Hi! I was also put on tube feeding and Prednisone but the nasogastric tube was a nightmare and I refused to put it down myself. So for the last few years I've had a gastrostomy tube called a Mickey which goes directly into your stomach. It's a million times better than n- g tubes - ask your doctor if you can have one if you can't cope with the nasogastric ones. It's been so helpful when my Crohn's is really bad and I can't eat anything because I know that over night I'll get some nourishment through my tube. And you can still go swimming, do sport, whatever.... The only thing is you can't wear really tight tops and you have to look hard for a swimming suit with patterns to draw attention away from the bump.
From Sarah: I actually met Julie when she was tube-feeding, she managed to convince me that it wasn't so terrible. I tube-fed for 4 months with a ng tube, had to take it to school and everything. It was hard, especially being in grade 11 at the time. It's a little bit harder to fit in with tubes hanging out everywhere, but not impossible. I used to use white cloth tape to hold the tube at my nose, and after awhile I started coloring it with markers. People started looking forward to seeing what interesting patterns I would be sporting, and I got complaints if the tape didn't match my outfit! After 4 months, the doctor (the same one as Julie) decided it would be easier to get a gastrostomy, sort of like a Mickey but just a Bard Button. This turned out to be the most horrible thing in the world for me, after a year of not being able to use it because the formula leaked out of my stomach AROUND the tube, they finally removed it. Now if I start to lose weight I put the ng tube back in for a week or two at night, and I did have to have tubes and Prednisone over Christmas. (spent it in the hospital, fun huh?) Right now I don't need any tubes at all, which is great. I think the tube in the stomach is probably good for most people, unfortunately in my case it didn't work so well. Good Luck to everyone else who's "tubin' it".
From Leslie: I was diagnosed last April. I took Prednisone until June '99. I was then in remission for about 9 months until this Christmas. I was starting to go downhill so it was decision time. I had to chose between a nasal tube or a G tube. I chose the G tube because of two reasons. I couldn't stand the thought of having something in my nose all the time and also because I didn't want to go to school with a tube hanging out of my nose. I had the gastrostomy on Feb.10 2000. I am feeling so much better. I am healthy and more active than I have been for a long time!
From Aliyah: I was diagnosed with Crohn's in 1995. I had trouble gaining weight (I have been on steroids many times, it ALWAYS works for me, but as my doc says, "It's not the right answer to help you gain weight all the time." I also had to drink those nutrient drinks) and none of these things helped me gain weight and keep it on. So, in 1996 before summer vacation, I had to start NG feeds. After awhile, I couldn't get the tube up my nose any longer. Then in the summer of 1999, I had a peg tube put into my stomach. This is like a small roundish thins that goes straight to my stomach I now just have to fill my bag and put an attachment into this peg tube. This is not the answer to my weight problems because I still have weight problems. I'm 16 yrs old and I only weigh 94 lbs (last time I was weighed) and am not even 5 ft. tall. I do my feeds every night, but sometimes, like if I go over a friends house, I don't have to take my feeds with me. I just wish that I could keep on weight and eat more without all of nausea.
From Anushka: So far I have only had one experience with tube feeding. Honestly it is not as bad as I imagined it to be. I was thirteen and I basically had no other option because I was becoming dependent on Prednisone. So I was admitted to the Alberta children's hospital and I was given antibiotics through an IV and I also learned how to put down the tube. It took me about three tries to get it right. It was hard in the beginning and I was ready to give up, but I tried with a different kind of tube that was thinner, more flexible, softer and could be kept on for up to 30 days. For the first few days in the hospital, I would not even move my head because it felt weird like something was stuck in the back of my throat. I got used in about a week and although it sounds scary, it felt natural. After I was released from the hospital, I wore the tube to school. The reason is because I did not enjoy the experience of removing and inserting the tube. No one really minded but a lot of my friends and teachers were concerned about me. The only thing that was hard about wearing it to school is that there were people all around me eating and without any food for 4 weeks I got kinda hungry. After that, I went on and off the tube for two weeks. When I was off my tube it was a big relief I didn't get any pain for a bit. So my advice to anyone who is considering the option of tube feeds is, stay in your room at meal time, go shopping it'll make us girls feel good and last, know that no matter how bad it is at the time you have the one comfort that it will keep you pain free for a while without any horrible side effects.
From Jennifer: I started tube feeding when I was 14, a couple of months after being diagnosed with Crohn's. It was either tube feeding or Prednisone. I had one day to decide and I went with tube feeding. I remember it hurt, A LOT when the nurses put it in, so when I went for my 2 hour training session the next day I wasn't too happy. It took me about an hour to get it out the first time and with a grape Popsicle as a reward, who could blame me? Putting it back in was even harder, but I eventually got it back it,............ only to have to take it out again, oy vey. When I brought all the equipment home and put the tube in for the first time it took me about five minutes. YAY! When I took it out the next morning it took me about 1/2 and hour. Taking it out hurt! For some reason the weight at the end of my "nose hose" didn't have an easy time coming out and so I looked forward to that moment of each day with dread. It would take me about 2 hours to work up the courage to take it out each morning and when I finally did manage to start pulling, it would take me another 15 minutes. I remember the first time my belly was overflowing with that wonderful stinky liquid called Peptamin and I ended up throwing up......tube included. Well I FREAKED out, and I ended up cutting the part that was hanging out of my mouth and just pulling it out. I actually preferred when that happened because that meant I didn't have to deal with the weight. I ended up tube feeding for 3 1/2 months and was on a clear fluid diet for 2 of those months. I ended up just not being able to tube feed for any longer. It was just too much of an emotional and physical drain. If I ever had to do it again I don't know if I could, I suppose I would try but that is a question I just can't answer at the time being. If anyone is considering this as an option I would definitely recommend it. It is different for every person and some people deal with it easier. I know someone who has been doing it without hassle for 2 years! All you can ask of yourself is to try.
From Paul: My name is Paul I am 14 years old. I have had a good experience with the tube except for my first try. I was taught by a nurse in her office I swallowed it fine. Then I went home to try it that night with my parents and no nurse and it didn't work. I gagged and through up everything I had eaten in the last 4 hours. What a mess. I never wanted to do it again. But a nurse came the next day and she talked me through the whole thing and I only gagged a little. But here is the best part. My uncle read on an Internet site a nice idea about how to swallow the tube real easy. You just push the tube in your nose still you start to feel the slightest feeling of it in the back of your throat. Then you take a cup with a straw and drink water. While you are swallowing the water you keep pushing the tube in. You go all the way in while you are slowly drinking and swallowing. Don't stop pushing till you got it where you want it and don't stop drinking. When you do both at the same time you never even gag one bit. I have tried it now for the last 6 days and I haven't gagged in any of my tries. Hopefully that will continue. Good luck and tube confidently!
From Lauren: I was diagnosed with Crohn's in the fall of 2000, and instead of trying many drugs, my parents and I wanted to try a seemingly natural way to get healthy, and get off of Prednisone. I read many of the tube feeding stories on here. I never even got the option to have anything but and NG tube, therefore I had to insert my tube every night, and take it out before school. My mother would mix up the dose, but I would do everything else. This was one of the worst times of my life. Every night I would bawl to my parents, begging them to let me stop, but they encouraged me to keep trying and to have hope. I went to the restroom about 10 times a day, and I didn't even eat anything from 6am to 5pm. I was on 40mg of Prednisone, so I was about to chew my leg off. I did this for 5 weeks, and only had 2 weeks of actual remission from it! I highly doubt that I would ever tube feed again. It made me dehydrated, and I developed blood clots because I was dehydrated and I had a clotting factor. I couldn't go out with my friends at night to dinner, and I didn't want to be seen by the community with a big yellow tube out my nose. I felt so lonely, and it just made my problems worse. I would recommend trying other drugs before tube feeding, because of my bad experiences with it. Good luck to all who are trying it, you are very brave!
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