Life on a Feeding Tube

My name is Sharon and I am 68 years old. I underwent an Esophagectomy in 2007. I lost at least 25 pounds weight-wise and had the usual problems with certain foods, eating too soon before retiring etc. I have progressively worse difficulties with the production of phlemn which not only nauseates me, but interferes with breathing and sleep. I do suffer from Asthma and COPD which complicates my situation. About a year ago now my problems with appetite and eating started to get progressively worse, I lost even more weight, and a couple of months ago was forced to have a feeding tube inserted into my abdomen to keep me from literally starving to death. My fear is that I may have a feeding tube the rest of my life so I am looking desperately for a solution to my lack of appetite, nausea, and the constant phlemn.

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  • Dear Curlyhead,

    It sounds like you've been going through a very hard time. I too was at the point of having a feeding tube for similar reasons. I have some practical advise, which you'll need to talk to your Gp about.

    1. Appetite- ask to be put on an antidepressant as one of their main side effects is increased appetite and weight gain. I take 25mg at night of amitriptyline. This also ensures a restful sleep!

    2. Phlegm- sudafed or another decongestant should sort this out if the cause it the phlegm dripping down the back of your throats whilst lying down.

    3. Keep the feeding tube in until you regained a little more than your usual weight, that way it's okay if you loose a little when you go back to eating.

    I hope that helps.

    Jay

  • Did your appetite return after the operation? Many people lose appetite because nerves are cut and they don't feel hungry any more. It was a long time after the operation before I began to feel hungry and before that eating was a routine; not something my stomach suggested

    Haward

  • It is good advice from Jay. I think that your body may need extra short term nutrition in order to help regain your previous equilibrium so that the medication against the phlegm and nausea will work better. Regaining the ability to consume food through your mouth may be hard work as the system needs to get re-trained with the proper saliva, taste buds and so on, and I am sure that the doctors can advise you about this. The sense of appetite is affected by a lack of ghrelin, something that is generated in the top part of the stomach, and this may have been removed in surgery. So eating by the clock rather than by appetite is something that many people have to learn to cope with.

    I quite understand that fear about the long term feeding tube but the doctors may well be able to give you a realistic estimate of how long it will take. Others have been down this road before and have got back to normal again, so there is no reason why you should not aspire to do the same.

    You may have tried all this already, but I am wondering whether your sleeping situation might be improved if you can try and sleep in a more upright position? It is possible that sleeping too flat might make any reflux worse?

  • Curlyhead, I live in the US and had my esophagectomy back in 2000. I lost over 100 pounds as could not stand the dumping and issues with digestion. My tube was replaced three times but it took ten years and me just saying enough is enough and just eat. My surgeon now wants me to lose 20 pounds or so. Stick with it, esophagectomies are more serious than cardiac bypass. You are making a functioning organ, the stomach, non functional that brings on the dumping and absorption issues. Another medication for weight gain is Remeron. By the way I am a former RN and I worked for my surgeon for some time.

  • Hi Curly, Sound advice from everyone, but I think Alan may have hit the nail on the head with the sleeping situation, if your sleeping in a more upright position gravity will be your best friend and help to resolve some of your problems.

    Don't despair about the feeding tube, it wont be for ever and it will continue to give you the necessary nutrition for the time being. I went down from ten and a half stone to just under seven, and I still keep my spirits up because I can't get any weight on, but I must admit I did feel the same about the feeding tube.

    I suck cough sweets to mask the horrible taste of the phlegm which I get as well, but I have found that being in the more upright position for sleeping seems to stop it slipping back into my lungs.

    Good luck with it all and try your best to keep your chin up.

    Best wishes Richard

  • I'm so sorry you're going through this .

    I wish I had better advice but my experience on a feeding tube was that because I was receiving nutrition that way ,I never felt hungry. Very counter productive .

    I hope you have access to a good specialist dietician .If not perhaps you could be referred - Orla Hynes at St Thomas's in London is v good ( as many on here will testify )

  • I am pleasantly surprised and a bit overwhelmed by the responses from all you very caring people! I am already encouraged to hang in there for as long as it takes to get my appetite and ability to eat "like a human being" back again.

    I have an adjustable bed so sleep half sitting up most nights and it helps. My Doctor recently prescribed a mild anti depression medication which I believe is assisting me.

    Specialist resources in this field are scarce in Cape Breton but I am hoping to somehow get a second pair of eyes to look at my file and give me some more insights.

    Thank-you everyone for your responses. I'll stay tuned in.

    Curlyhead

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