Our story so far

[Chester31]

I've been lurking here for a couple of months now and thought it was about time that I shared our story.

My son (almost 15) has had various health issues over the last couple of years including loss of appetite, chronic mouth ulcers, stomach aches after eating, diarrhoea, bouts of vomiting etc. We've had numerous trips to the doctors and been fobbed off with various creams, mouthwashes and antibiotics. I was made to feel like a paranoid mother and in desperation we decided to give 'gluten-free' a try. This had an immediate impact - J's appetite increased, the stomach aches went away and there were fewer toilet trips but it wasn't a complete fix. At a routine check up J's dentist saw the mouth ulcers and told us to go back to the GP and insist on blood tests. We did this and he was found to be anaemic. Finally they were taking things seriously! We were referred to a paediatric GI and had scopes done in June. He was diagnosed with Crohn's - oesophagus, stomach and colon. He has been on 2g Pentasa a day since diagnosis, had 4 iron infusions and finished 8 weeks of Fortisip on Monday. He has been an absolute star through all of this despite also having tonsillitis and oral thrush, he's just accepted it and got on with it. We have now started an elimination diet (based on the one in Prof John Hunter's book) in the hope that we can work out triggers - I'm guessing gluten or wheat will be one of them. I'm trying to get him to keep up with the Fortisip too as I don't want him to lose the weight he's recently gained, but he's not keen and is refusing to drink them at school now.

Apologies for rambling but would love to hear from anyone who's had success with the elimination diet.

 

[Patricia56]

The only treatment he is getting is Pentasa?

Pentasa has been shown to have almost no benefit in inducing remission. It has some benefit for maintaining remission but generally symptoms/findings like you are describing would warrant a higher level of care.

6-MP (Imuran/Azathioprine) or Methotrexate at the minimum. These take several months to become effective so they should be started early in the treatment process.

While elimination diets can certainly be helpful for many CDers, diet alone has a very poor track record. A few children are able to maintain with a strict diet along with supplemental or exclusive EN but I personally don't know of any for whom this has worked long term.

Best wishes and welcome to the board.

 

[Sascot]

Hi and welcome. It also took a long time for our docs to take me seriously about my son - glad your son has finally been diagnosed. My son did the Modulen for 8 weeks and it certainly got rid of all his tummy pains, but since then the nutritionist has told us that diet makes no difference - just avoid foods that cause pain. So no advice on the elimination diet sorry. Good luck if you do go down that route!

 

[Jmrogers4]

Welcome, no advice on the elimination diet. Quite a few have done introduction diets especially after EEN add one thing in at a time, keep a food diary and see what triggers are.
I had to battle my 14 year old son with drinking his EN at school (He didn't for the first 2 weeks, when I found out, lets just say I didn't deal with it well. Spent the rest of the day crying) They are teenagers and live in the moment and don't see the big picture of how it will help.
Once I got his teachers and the school nurse on board it was much easier and he had some accountability as he went to the nurses office a few times during the day, drank one and had to sign off with the nurse that he drank it.

 

[ChampsMom]

Hi Chester31,

Sorry to hear about your son's trials, but glad to hear you now have a diagnoses and are working towards getting him everything the needs. How is he feeling these days?

We didn't do an elimination diet per se - but our nutritionist did give us a "Don't ever eat that again list" and a "You'd probably want to be careful with *that* list" and my son has (for the most part) stuck with it. (I recently posted the list on another thread recently, if you'd like to see it and can't find it, just let me know and I'll send it to you).

Gluten was not something we were told to remove - regular dairy products were (he does lactose free and Tofutti type dairy products now).

Good luck with everything!!

 

[pops14]

We did the full elimation diet following louis first session on Modulin, at first really easy as just a few foods to keep track of but as you go through the list it gets increasingly hard to figure out what was the trigger, we only came out with two no no's Bananas and garlic, have since figured that excessive sugar makes him bad but am sure we still have more to find.
We were told if you find a food that you think he reacts too give it a few days then try it again just to check, garlic even in small amounts gives him alot of pain also my sister Dx 25yrs ago is hugly intollerant to it. Basically in flare most food will upset so just give it a try.

 

[Dexky]

I agree with Patricia! He already has inflammation from esophagus-colon and mouth ulcers too! Pentasa is a targeted med that does nothing for the upper GI tract. Good luck!!

 

[Chester31]

Thanks for all your input.

Our dietician is of the opinion that diet will not make a difference but that wasn't our experience before diagnosis so feel we have to give it a try.

ChampsMom - I have now found the thread with your "don't ever eat' list. That's really helpful, thank you.

Hope to discuss meds at next GI appointment in October.

Thanks again

 

[Tesscorm]

My son did six weeks of exclusive enteral nutrition and then we reintroduced all foods within a 3-4 week period. We were told only to eliminate seeds, pieces of nuts, popcorn/corn and minimize fruit/veggie skins.

My son finished his six week exclusive period in July 2011, his only treatment continued to be suppmental EN for another 1.5 years (1/2 the dose, 5 nights per week - he ingested his formula thru NG tube overnight). The exclusive EN did induce clinical remission (so no symptoms) and eliminated some/most?? of the inflammation. However, MREs continued to show ongoing inflammation in certain areas. Upon transfer from his ped GI to an adult GI, the new GI was not comfortable with the ongoing inflammation and recommended remicade. His concern was that the ongoing inflammation would, sooner or later, lead to complications (scarring, stricturing, surgery, etc.). Symptom-wise, for the most part, my son remained in clinical remission throughout the time on supplemental EN (his only drug being an antacid - due more to NG tube issues rather than crohns) and MREs did not show worsening inflammation but neither did they show improvement once the exclusive period ended.

So, my points , do try to encourage your son to continue with supplemental EN for as long as possible (my son was ingesting 1500 calories per night in addition to a regular diet), I very much believe that the vitamins and minerals he received helped his body control his crohns to a degree... but, should you try to control his crohns with diet, be sure to stay on top of inflammation through testing. Ongoing inflammation can cause complications that sometimes do not have an 'quick, simple and easy' fix.

Regarding an elimination diet - a member, happy , has had success with an elimination diet (not sure if she is on medication as well??). If you search for her posts, she has shared quite a bit of information regarding her efforts in following and elimination diet.

Good luck.