Enteral Therapy - an explanation...

There have been a few posts lately asking about/discussing enteral diet (ED)therapy and I wanted to share what I learned yesterday at my son's GI appointment.

My son, 17 years, was diagnosed in May with moderate Crohns present in his TI, large bowel, some areas in his duodonem (spelling?) and some swelling in his small intestine. His only treatment has been enteral nutritional therapy. His only nutrition for the first six weeks was the formula (Tolerex) through an NG tube, after the six weeks, he was put on maintenance - 1/2 the dosage, 5 nights per week. His only medication is Nexium. He has responded very well. Not sure if I can say he is in complete remission - has small isolated discharges of mucus with specks of blood every 2-3 weeks (which is being followed up now), however, this has been his only symptom. His fevers, fatigue, diarrhea are all gone. He has regained his lost weight plus some (he is actually beginning to worry about the gain!)

However, until yesterday, I had never received a very clear explanation of how the Tolorex worked. This is his GI's explanation...

Prior to fully understanding the reasons and benefits of nutritional therapy on Crohns, they believed that complete bowel rest was the benefit from ED. However, they found that while bowel rest helped, patients receiving nutrition through TPN (complete bowel rest) were not moving into remission at the same rates as those on ED. There was also some thought that allergies were a factor and that the formulation was alleviating the allergic responses - this was found to be incorrect.

The current belief is that being so easily digestible, the ED does provide the benefits of bowel rest but by feeding the intestinal system, the formula is actually feeding the good 'bugs' (his 'word', I suppose the bacteria) in the intestinal system, strengthening them and allowing them to fight the bad 'bugs'. Through studies, they have found that 6 weeks is the optimal time period for exclusive enteral diet to induce remission. The maintenance period (planned to be one year for my son) allows a normal diet during the day. The reason that the maintenance therapy works (while eating and eliminating bowel rest) is that the formula continues to feed the good 'bugs'. He described it by saying that the initial 6 week period allowed the good bugs to strengthen to a certain level and that the maintenance keeps the good bugs at that level and they are now strong enough to continue to fight the bad bugs without bowel rest.

Also, while both steroids and ED eliminate the inflammation, steroids do not do a great job at repairing damage that has been done. But, ED (or the strong bugs) actually repairs some of the damage once the inflammation has been eliminated.

He also explained that maintenance ED does not work (or not as well) if remission has been brought on by steroids (opposed to the six week exclusive ED treatment). i.e., his explanation that the initial six weeks period has taken the good bugs to a certain strength whereas the steroids would not have done this job.

Another added benefit is the source of easily absorbed nutrition.

He did warn that not everyone remains in remission throughout the maintenance period and, if this is the case, more traditional treatments (medications) will need to be used.

Not straight from doctor's mouth, so I apologize if I've missed anything, but related as best I can...

Hope this is helpful...:ysmile:

Its very interesting indeed. I wish something like that lasted for a much longer term without the use of medications ever (really I'd like it if the disease itself would just off itself and die).

God, me too!

I wish I'd had more time to discuss the ED further with my son's GI but we had to get to the blood lab before it closed and had other things to discuss so couldn't get into any more detail. However, one thought came to mind right away... isn't this what probiotics are supposed to do? I don't know much about probiotics but, given my limited knowledge, I thought the theory was the same - strengthen the good bacteria in your gut???

Haven't given my son any probiotic supplements yet, simply because things seem to be good with him and I don't want to 'fix what ain't broke' but probiotics will certainly be the first thing I do should complications arise.

Something else that was interesting... during my son's initial diagnosis, one of the other GIs who initially diagnosed him, told me that his wife also has Crohn's. Somehow the discussion of probiotics came up and he said that while medical studies haven't PROVEN effective and/or direct improvement from probiotics, his wife takes probiotic supplements and swears by them. He said while the medical community can't say they definitively help, he/they also won't say that they don't. He recommended 'live' bacteria if it was something I wanted to give my son.

Anyway, his regular GI said the hospital is involved in continuing studies into the effectiveness of ED to further understand how and why it works. Further studies can only help! :rosette1:

And, how are you doing? Is everything coming under control? Hoping your signature soon reads 'back in 12 year remission with MINOR detour!' :thumleft:

I don't know too much about probiotics either but did take acidophilus for a while. I didn't notice a change in anything although I was already in remission at the time. In a way it makes sense to have more bacteria for our immune system to attack but if the disease is severe enough I'm not sure increasing the number of bacteria would help much if at all. Everyone is different so if the disease is rather mild then it may help some. That's just my uneducated expert opinion.

I'm seeing my GI tomorrow to discuss my most recent blood work and see if he thinks we should try something else. Its been about a month since my med change and I haven't noticed much improvement yet unfortunately.

I've been wondering if its fair to say that I'm still in a 12 year remission with a minor detour. I'll probably just start the count over and see if I can break that record.

Hi everyone - I am new to all this a really confused. I am seeing a specialist who has hardly ever mentioned the idea of diet (he seemed to think it wouldn't help) and has only gone down the drug route (with little success....). So where would I find out more detailed info re this whole Enteral Therapy? Should I find a new specialist? Is it up to me to read/research it all myself? I know I sound totally clueless but I am! And totally overwhelmed (and feeling pretty crappy at the same time!).

Hello StepfordWife,
Welcome to the forum. You are in the correct section of the forum to get info about Enteral Nutrition. Have you looked at the sticky at the top of the thread under Treatment: Sub-forum: Enteral Nutrition: About Enteral Nutrition... by DustyKat? That's a good place to start.
Unfortunately in Canada, particularly for adults, Enteral Nutrition as a treatment option is rarely suggested. I don't know about Australia. So, yes, we often have to do our own research about this topic.
Two books are helpful Beat Crohn's by Margaret A. Oppenheimer and Inflammatory Bowel Disease by Professor John Hunter.
may you soon be feeling better.

I asked to try it several times and my GI has refused saying I am too sick for it to work. I am currently awaiting Remicade approval and was wanting to try everything else I possibly could before going on to such strong medications.

Hey kllyeve, are you on the map?
http://www.zeemaps.com/253605

happy said:

Hello StepfordWife,
Have you looked at the sticky at the top of the thread under Treatment: Sub-forum: Enteral Nutrition: About Enteral Nutrition... by DustyKat?

Click to expand...

Hi Happy - nice to meet you. Yes I had read the sticky but I have never heard of any of these supplements before, and am unsure which ones I can get in Australia (and where from) and I must admit the idea of living a life just drinking supplements is a little depressing. But hey, so is having crohn's so wadda ya gonna do? LOL! I don't know, like I said I feel overwhelmed and a bit sad about it all really. Thanks for recommending those books - this is something I can at least do - educate myself and then see how things pan out. Thanks again for your help x

Tesscorm -

Thanks for sharing this explanation. Very interesting to read.