News story of boy who uses enteral nutrition to treat Crohn's

NiceCupofTea-Good idea to try the GI although if he is in agreement will more than likely refer to dietician(we found that referral took days as opposed to the weeks it would most likely have taken if we had gone back to GP)

Son didn't feel hungry on it but he did miss the physical aspect of eating. He stayed on his initial meds, which were then increased to include entecort whilst he began the three week switch over of re-introducing solid foods.

"Does this type of diet keep you feeling full up or do you feel hungry all the time?"

It fills you up; you drink the number of calories you would normally be eating.

"Also, would you come off your Crohn's medication or do you stay on it?"

If the medications are helping, stick with them. If they have stopped working, then there is not much point to continuing. However, with steroids, you have to go through the usual taper.

Worst case scenario is to start steroids and enteral nutrition at the same time because then you are desperately hungry at the same time you can't have solid food. I'd go with one of the other, but not both.

poppysocks, sorry the insurance company is still giving you grief.

Thanks, folks.

@vixen - I can't see a referral to the dietician taking only days in my case. It took several weeks to get to see a haematologist and I suspect (although don't actually know) the only reason I saw the haematologist when I did was because my GP did some chasing up on my behalf. That was when I had a haemoglobin level of 7, so it's not like I only had minor anaemia. Maybe I'm cynical, but in my experience referrals are a bit like the dark matter of the NHS - they are floating somewhere around the system, but invisible to all and sundry within it :-/

I'm glad to hear your son didn't feel hungry on liquid foods. I can well imagine missing the phsyical aspect of eating and indeed that aspect does worry me. But as long as I'm not starving, forgoing eating for a few weeks should be a bearable process. Particularly with an end goal in mind. (Remission, hopefully.)

@Google LDN - Prednisone + enteral nutrition just sounds like a combination dreamt up by a sadist. As Writer said, one or the other but not both. It also couldn't have helped that your son was only a child at the time. It's hard enough for adults to eat unpalatable things for their good health; it must be almost impossible for children, who haven't yet developed the facility of abstract thinking, to do so.

As far as LDN is concerned, I don't want to talk about it too much here because that's really a different subject altogether. Suffice to say I'm glad it worked for your son and I haven't ruled it out as a possible 'alternative' treatment. I notice that your son is effectively on a variant of the SCD diet though, and wonder what it was which really helped him the most: that or the LDN.

@Writer - That's the thing. I'm on 6MP and can't tell if it's helping or not :-/ You think it would be easy to tell but for various reasons I really cannot. I suspect if it's doing anything at all, it's not stopping the Crohn's but it's preventing it from getting worse. At any rate, considering how long it takes for 6MP to start working I think I'd rather stay on it than stop and start it - again.

@Ivy - That's good :p

I have been using enteral nutrition since i came out of hospital at the beginning of this year with yet another abscess.  one of the best things about it is that you can start by just taking the liquid food and then start trying out various foods one at a time and find out what foods you can tolerate and what you can't. If you get a problem,  yoou can just go back to liquid food again for a bit.

The one i take is called EO28 and its not bad. It comes in three flavours and is best chilled. you have to be aware that you will have much fewer bowel movements and can get a bit constipated, (which can be a blessing not a problem!) 

My docs were prepared to let me try it but thought I was very strange for being able to bear it. I later found that the dieticians were totally used to dealing with it and had a whole list of suggestions of what foods to try first when coming off it.

It seems so useful I cant see why it is not more widely used, it is certainly worth trying if using it is as effective as steroids it seems it should be one of the first treatments offered.

Writer- I bought your book a while ago and it was so useful, I lent it to a friend, I cant remember if you say there are any side effects from long term use? Apart from putting on weight!