You have hit on the problem with drinking the formula rather than using an NG tube and a pump. How do you get enough formula in them? Especially if they are underweight and need extra calories it can be tough.
Having an NG tube doesn't necessarily mean he can't go to school. So you can disabuse him of that notion. There is no medical reason why he couldn't go to school with an NG tube in place although it would probably be a good idea to excuse him from PE. The pumps are very small and fit in special backpacks or fanny packs made for that purpose.
He has probably never had to have an NG tube for more than a brief period or he might not be asking for one. Yes, most people are able to tolerate it after a few days, but it is rarely "comfortable". And it's a hassle. And it's unsightly because you have to tape it down on your face. And it has to be replaced at least every 30 days. And having to fix the tape constantly means the skin on your face is not happy. etc.
What some families do is a combination of oral intake during the day and dropping an NG tube at night to supply the additional nutrition he hasn't been able to take in orally.
Here's a link to a 2009 article about
the use of Exclusive Enteral Nutrition (EEN) in the treatment of pediatric CD. It has some really good info in it.www.practicalgastro.com/pdf/April09/DayArticle.pdf
My son did exclusive enteral feeding via NG tube twice. The first time was very early after his diagnosis when he was 10. He did it for roughly 10 weeks. He had very rapid improvement in some ways - visible improvement of the colonic inflammation, beginning healing of his perianal disease, no more blood in stool. But it was not enough to get him into solid remission - at least not in that short a time. He was not on any other treatment at the time.
He did a second round of enteral feeding via NG about
a year later after 3 hospitalizations for obstipation (his intestines shut down and were completely full of stool).
Based on these experiences and stories I've read from other parents using enteral feeding, I found a couple things in your reply that didn't fit our experience or the advice we were given when doing enteral nutrition. You may want to consult your doctor or dietician about
1. In the studies that I am aware of and in our experience, exclusive enteral nutrition (EEN) is most effective in bringing about
remission when it is done as a strict, exclusive diet. Normally tea would not be allowed - that would include black tea, green tea, herbal teas.
During his first EEN the only things that my son was allowed in addition to formula were plain water (a specific amount not to be exceeded), one 7 up a day and 2 or 3 simple hard candies. The second time we did enteral feeding (different docs) he was also allowed to have slushies made from ice, sugar and flavoring from cooking extracts as well as "clear" Koolaid. And there were few limits on extra fluids. This is one part of doing this diet that is "fuzzy" and varies a lot from one place to another.
2. You really need a dietician to tell you how much water (including in the form of ice) it is OK to include in his diet. Since he is using a concentrated formula you need the correct balance of water to formula and a dietician is really the right person to figure this out for you.
3. That doesn't seem like enough formula for a 15 yo boy but I don't know his ht/wt and current nutritional status which all affect the amount of formula he would be prescribed. If he is drinking 5 cans of Ensure Plus he is only getting 1750 calories a day (assuming he gets all of it down).
Usually pediatric CD patients need calories in excess of the maintenance level. If he's 15 and 5'5" tall and weighs 110 his maintenance needs would normally be about
1750 cal. Often ped CD patients on EEN are prescribed as much as 150% of the normal caloric intake. Again this is why it can be essential to have a dietician on board to counsel you and his doctor.
I'm relieved to hear you decided to go ahead and try the 6-MP. I truly think your son needs to be on meds for now. 6-MP is a good place to start.
My son was switched to Methotrexate a couple years ago. At the time he was on 6-MP and Humira. I asked to have him switched because I knew that 6-MP had not gotten him into solid remission and I wasn't convinced it was the right med to use at that point.
Last year, after being on Humira for more than 2 years, my son decided he did not want to continue the Humira. The shots were very painful for him and he had been in solid remission for more than a year. His ped GI wasn't happy but also wasn't surprised. He said most of the teens try to go off their meds at some point. Sadly, he also said they always flare and have to go back on the meds, sometimes immediately, sometimes it takes a year or more. My son did agree to continue the Methotrexate and so far his remission is holding well.
It's my opinion (supported by our Ped IBD specialist's experiences) that pediatric CD patients with mod/severe CD (which is true of most adolescents with CD) need to be on a biologic combined with an immune modulator until they reach adulthood. At that point, it's uncertain what they will need to stay in remission but often they must continue that treatment regime in order to stay in remission.
Without intensive medical treatment, adolescents with CD often get really, really sick and have to have surgery or develop complications like obstructions and fistulas. I think (and there's some research to back this up) that the hormonal changes that happen during puberty help explain the severity of the flares many teens endure. If you can get them through that with a reasonably intact gut, things may settle down once they get older and they may be able to back off on the meds to some degree.
son now 15, dx CD age 10; current meds: MTX and omeprazole; previous tmts: pred, 6-MP, Humira, entocort, GMCS, exclusive enteral feeds, pentasa, mesalamine enemas, cipro, flagyl, many topical treatments for perianal disease
sister, late 40's, short bowel syndrome, TPN w/lipids and vits, severe malabsorption, poor fluid retention, severe complications from malabsorption including retinal damage.