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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

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
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
Hi D_H

hope you’re well. My son and I are ok. Is there anything for mum guilt? I have to go to work which means I have to drop my son off at his dads as he can work from home. Aaron is having a feed at the moment. We had an appointment with one of his 3 consultants the other day and Infliximab was mentioned. This is where I can’t tell if Google is a help or a hindrance. The side effects and what the drug can cause sounds like I will be challenging the Doctor’s on this option because I really don’t want Aaron to go on this medication. Will I be seen as a mum who puts obstacles in the way of her child’s wellbeing?


my little penguin

Staff member
In terms of infliximab
As a parent completely understand
But the thing that helped me 11 years ago maje the same decision
We take risks everyday for quality of life without thinking twice
Riding in a car (kids under 14 in the US at least risk of dying is 1 in 250 ) but we permit this for quality of life
Swimming risk of drowning is 1 in 1000
T cell lymphoma risk for anyone on the street is 1 in 10000
T cell lymphoma risk for someone who take infliximab and imuran /or 6-mp
Around 1in 6000

other simple meds we use on infants acetaminophen (Tylenol) can cause liver failure ,Steven Johnson syndrome and death
Same for everyday antibiotics such as amoxicillin

my point is all things have risks
Most drugs we use have potential side effects
Stress potential

my now adult started remicade at age 8
His is now 19 and on Stelara
No real side effects other than a pink healthy gut
He went to school (less colds than his sibling )

As a parent when he first got infusion I would be a crying mess worried
But as a parent hearing his swim coach notice a distinct difference in his swimming after each infusion -priceless
Biologics gave my kid back
I just didn’t realize how sick he had gotten

Hugs to you
It’s tough
Abd teen years are tougher to control
Puberty unleashes a ton of inflammation when it starts


Well-known member
San Diego
Hi D_H
This is where I can’t tell if Google is a help or a hindrance. The side effects and what the drug can cause sounds like I will be challenging the Doctor’s on this option because I really don’t want Aaron to go on this medication. Will I be seen as a mum who puts obstacles in the way of her child’s wellbeing?
The biggest health threat that Crohn's patients face is not the side effects from Crohn's medications. The biggest health threat that Crohn's patients face is the serious illness and permanent damage caused by uncontrolled or poorly-controlled Crohn's disease.

The potential serious side effects of biologics are real but very rare. The potential serious bad effects of poorly-controlled Crohn's disease are very real and very common.
So for a boy the drug you don’t want is azathioprine aka imuran, while all drugs have potential risks imuran for some reason teenage boys are a higher risk group for side effects. Biologics is a game of find the one that works which is not as simple as read the studies but more try and see how your body reacts. I completely agree with scipio- no biologic is as dangerous as rampaging Crohn’s so it is about wrestling it under control miserable as it is.