Hey Aaron,
My son was 16 when he was diagnosed in May. He had the NG tube and liquid diet for six weeks. Once the six weeks were up, he gradually reintroduced all foods but is on 'maintenance' - still has 1/2 the dosage of formula, 5 nights per week. He honestly hasn't found that the tube is too big a deal! He inserts it each night and removes it in the morning. He was pretty comfortable inserting the tube within just a few days (hardest part is getting over that 'gag' reflex - just try to visualize just how tiny that tube really is as you swallow). Some people choose not to remove it and that is an option (I think you can keep it in for most of the six weeks...???) As far as the discomfort, my son said the sensation of having the tube in annoyed him for the first few days, then he just got used to it. The only other thing that really bothered him at the beginning was the sound of the pump while he was trying to sleep :angry-banghead: (but, again, after a week or two, he wasn't even noticing it). The formula ran for 10 hours per night during the initial six weeks but, ask if you can adjust the speed of the pump. My son was allowed to make small adjustments and could speed it up so that it ran for only 8 hours - this allowed him to work it in after a later night out :hockey: and still be done in time for school.
Of course, he would prefer to not have to deal with it but, he really has an easy time of it now. It literally takes him just seconds to insert it before bed. I recently asked him if, given a choice, he'd prefer to drink a 'shake' (as there are some drinkable versions available in the US and the UK but,he said if it didn't taste good, he'd rather use the tube. Actually, he's going for an MRI in a few weeks and is planning on taking his tube, pump, etc. as he'd rather take in the prep liquid by tube rather than drinking it (not sure if he'll be allowed to do this but we'll ask...:tongue
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As far as his diet, after the reintro phase, he has been lucky that he has been able to eat pretty much anything. HOWEVER, he has made some small adjustments - he's cut back on very fatty food and some fast food (but still makes the odd trip to McDonalds), will often order baked potato instead of fries, grilled chicken sandwich instead of hamburger... not always, but keeps the 'bad' food in moderation. There are other diet concerns (i.e. less fibre, etc.), but I'm sure your dietitien will advise you. So far, keeping the 'bad' food in moderation has worked for him BUT everyone's different. Follow the instructions you're given and 'test' slowly when you reintro food. As someone else suggested, keep a log of what you eat, your activities (i.e. if you are especially tired one day...) and you may start to find some clues as to what doesn't work for you.
As for the 'rest' of his life, he'd lost tons of weight but has regained all of it, has had very minor symptoms since he's started his treatment, is back to school, hockey and all his other activities. :emot-dance: The six weeks of no food was tough but it's taken him back to his old life with no side effects. You just have to find a treatment that works for you (may be the tube feeding or maybe something else but just be patient:ycool
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Good luck, feel free to ask any questions as there are lots of people who can help you here!