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Crohns mum with Crohns 14 year old son.

Hi there,

this is my first time on this forum. I was diagnosed with Crohns back in 2005, fast forward to last week which is when my 14 year old son came out of theatre with an NG tube. My heart dropped and I had so much guilt for my child. When the paediatric consultant came to speak to us and said it’s Crohns this is where I blurted out that “It’s my fault isn’t itI?!” He goes on to say that it is just bad luck and Crohns isn’t genetic. Lies. I’m thinking to myself. He’s saying that to make me feel better.

Aaron is now on Modulen. In my time working in Pharmacy, I have never heard nor seen it before. I looked it up and it says that it is an anti inflammatory meal replacement etc etc. the following day we’re up at sick kids and I ask the GI nurse, what makes it an anti inflammatory shake? She says it’s a very good question but she doesn’t know, supposedly a lot of doctors don’t know the active ingredient that makes it specifically used for Crohns.
While I was waiting to be accepted on this forum I read that someone called it a life saver. I would love to hear more success stories so I can pass it on to my son. My son loves food but it doesn’t like him, going without his favourite food and when it’s his 15th next week he can’t celebrate. The next 7 weeks is going to be horrendous.

Any advice will be lovely

Many thanks Jes x
 

my little penguin

Moderator
Staff member
There is a parents section here

My kiddo was dx at 7 now 19
He used formula only (exclusive enteral nutrition-een) a few times
Modulen is a semi elemental formula in the UK
Similar version in the US is peptamen or peptamen jr
Numerous studies have found een (formula only ) is effective as steriods in kids to reduce the inflammation in the gut
However once solid food is reintroduced the inflammation comes back
So just like steriods a maintenance med is started the same time as een
Which med depends on the country and insurance/disease level

There is a pyramid of drugs which starts at the bottom the least effective (but cheapest ) and least Possible side effects
5asa (Pentasa asacol etc)
They treat the top lining of intestine
But not below
Them immunosuppressants
Methotrexate and 6-mp
They no longer recommend 6-mp/aza for young kids in the us due to increased lymphoma risk
Last are biologics (extremely difficult to get in UK )
Remicade /humira /Stelara/entyvio

my kiddo has been on all the types of meds at one time or another
Currently takes Stelara plus mtx
Due to crohns and juvenile arthritis
Biologics were the hardest to give -as a parent
But easiest for the kiddo in terms of effectiveness and least side effects

een is great
Partial en helped keep his weight up and let him grow
Any formula only gets the same results
Polymeric (ensure ,boost forstips etc)
Any semi elemental
Or elemental (vionex jr ,neocate jr ,elecare jr )
Just needs to be formula only for 6-8 weeks
To give the maintenance med time to work
 
Thank you so much for your response. It’s nice to hear from someone with experience and not just what their job has taught them. You have so much knowledge on the topic, I have tried keeping my own experience out of what my child is experiencing now.

Thanks again
Jes x
 
Have a look at CDED diet - there is some research that kids can get into remission on shakes then transition on to this diet and stay in remission 🤞 also some suggestion if is as effective if you do part shakes part CDED diet food- I am not saying good idea to cheat but more back up option if your boy point blank refuses to stay on just shakes the whole time
 
Here’s a link
 
Hello from Aberdeen Scotland. I love how this forum has people getting in touch from far and wide. I forget that Crohns and Colitis doesn’t care which country you’re from


Thank you for the link, I will be doing a lot of reading over the next few weeks. I have asked more questions when it has came to my son than when I was ill - i didn’t want to be alive to be honest. I had part of my bowel removed and now my join is playing up but I have to remind myself that there are others that have it much worse.
 
Hope early days are going well for your boy (and you). Just to pick up on MLPs point about biologics in the UK, one of my IBD nurses told me that different commissioning groups have very different approaches, so it is a bit of a postcode lottery in terms of where you live whether you are going to have a battle on your hands. I am down in Gloucestershire and have been on Biologics and double dose Biologics. For me Stelara has been head and shoulders above the other drug options in terms of efficacy and minimal side effects. Different people have different experiences of what works best.
There are more drug options available now than when you were diagnosed and there are studies underway at the moment looking at possible alternative treatments so there are grounds for optimism, albeit this is a wretched disease and so hard for a teenager when fitting in, and food, feel so important- hope he is feeling better soon
 
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