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Ali's Crohn's Journey

This seems like a good place to share our experiences with Crohn's- so here goes.

My daughter is 16 and she was diagnosed with Crohn's Disease a few weeks ago (May 2019).

Back story- she has no history of diarrhea, abdominal pain, nausea, weight loss, fever or any of the other symptoms associated with CD. She was maybe a bit tired, but that seemed kind of normal for a busy, hard-working, teenage student. The only health problem she had was bad period pain which she treated with Naprogesics. Pre-period she always suffers flu-like symptoms and constipation. There is no known family history of CD but the potential is probably there.

About a year ago she complained of having a sore on her bum which bled a little bit sometimes after a poo. After some quizzing it seemed that this was intermittent and exacerbated during the period constipation. I suggested she see if it would clear up on it's own. We had a very busy year with international travel, school camps, school formal, work experience, etc. In January she mentioned that her bum was still causing trouble so we went to see the GP.

The GP found two fissures and prescribed Rectinol ointment and salt baths and advised it should clear up in 2-3 weeks. She also wanted blood tests. These first tests showed anaemia and inflammation. The GP asked about diet. I was surprised because we have a very healthy diet - fresh meat and veg every day, almost no junk food, eggs or porridge for breakfast, fruit for morning snack. Anyway we upped the red meat and introduced orange juice with dinner instead of water.

The follow up blood tests 3 months later were almost unchanged (Ferritin = 16) and the unhealed fissures led her to organise an urgent visit to a pediatric enterologist. Three days later she had a colonoscopy and gastroscopy and a provisional Crohn's diagnosis. The pics showed a healthy colon, a thickened patch on the stomach and a seriously inflamed Terminal Ilieum with a stiff valve. She was given an iron infusion the same day. This made an instant improvement in her energy levels. She became more aware of abdominal pain after eating.

We had to wait a couple of weeks for the follow up appointment where we were told the tests and biopsies indicated no tuberculosis, hepatitis or chicken pox but there was Crohn's Disease. He gave us a choice between steroids and EEN for 6 weeks, followed by immune modulators. We opted for EEN. He is also giving her a second iron infusion next week because the serum is still only 4L. (Ferritin = 165)

It took a while to get an appointment with a dietitian so EEN didn't start for another two weeks. We have just completed Week 1 and so far so good. She is having a combination of Ensure, Fortisip, Resource and Sustagen. The flavours are vanilla, chocolate, banana, strawberry, coffee, wild berry and peach. She can also have barley sugars and jelly. She is missing eating crunchy food.

So far she has maintained her weight and still feels occasional abdominal pain which seems to be associated with wind. EEN has given her loose stools once a day.

Meanwhile, I have spent hours trawling the internet for information on CD, UC and IBD. I am glad we opted for EEN, but time will tell. The most informative general website is:

I plan to write updates as they happen.
 
Welcome to the forum, but sorry that you have to be here. Thanks for sharing your daughter's story. I also have a 16 year old daughter with Crohn's who was diagnosed when she was 12.

A few things jumped out when I read your post. First, I think it's great that you and your daughter were willing to try EEN. It's not easy, but it can really be effective and certainly has fewer side effects than steroids. I noticed that your daughter is using polymeric formula, which is the easiest to drink. Some kids do great with this type of formula, but if her test results don't improve on the polymeric formula, it might be worth asking about semi-elemental formula. This type is more broken down and thus easier for inflamed intestines to absorb. It also tastes much worse though, so some kids need to use an NG-tube with this type of formula.

You also said that immune modulators would follow EEN. Has your doctor said what those might be? EEN and steroids are not long-term treatments, and the maintenance medicines that are used long-term often take a while to start working. So usually those are started at the same time as EEN, so that they are starting to work by the time you stop the EEN.

Finally, has your doctor said anything about getting a look at your daughter's small intestine? Either an MRE or a pillcam can be used to find out whether there is any inflammation or damage in the small intestine.

Please do continue to update us, and also feel free to come here with any questions and concerns.
 

my little penguin

Moderator
Staff member
:welcome:
Sorry you had to join us but glad you found us
Ds was dx at age 7 and is 15 now

Second the MRE you want to know the extent of her disease
Modulen would be the Semi elemental similar to peptamen in the US .
Semi elemental is standard for een
But if she tolerates polymeric and maintains weight all the better

Additionally finding out what maintenance med
Methotrexate takes 12 weeks to be effective
6-mp takes 3-4 months
Remicade takes 6 weeks
Humira 3-5 months
So you definitely want to start the same time as een
Since once food is re introduced the inflammation comes back and you have to start over
Sometimes with steroids

Also be prepared there is no “right” way to treat crohns
It’s all about what med actually works to get your child healthy again

That may not be the med you like or want or even the first Med you try
It may be a combo of meds

That was hard for me to learn when Ds was first dx
I was going to only do “een” everything else seemed evil
Then he got sicker
And we spent a year trying lower level
Less risky but less effective drugs
Finally after a year they permitted him to try remicade (he was mild crohns with lots of extra intestinal manifestations)
After three infusions I had a new kiddo
No vomiting
Plenty of energy
Swimming times improved
That was at age 8


He is now on Stelara and methotrexate
Crohns is ok


As far as crunchy
Crushed ice with sprinkled sugar or salt to chew
It helps
As does rewards per week

Sugar can be “spun” to make cotton candy
Which is fun to eat
Also to make sugar /water “candy”
Once you boil the sugar

We are here and all of us have asked a ton of questions in the beginning
Takes 1-2 years to get to the normal (new version )
So take it slow
 
Hi Pdx,
Thanks for your reply and tips.

The current plan is to see how we go with 6 weeks of EEN, one down, five to go. So far she is willing to drink it orally. Some plus sides for her are that she doesn't have to help with the dishes, cooking or table setting, and is allowed to watch screens at meal times.

The doc said he might use a pillcam next time but there are hoops to go through to get it approved. It would be good to check the full length of the small intestine. Colonoscopy showed about 3-4cm of Terminal Ilieum was inflamed and further up looked ok, but he didn't go in very far.

Doc is suggesting Imuran for after. I am not convinced that this is a good idea, I worry about an impaired immune system. Studies seem to show that longer term EEN can gain full remission, mucosal healing and transmural healing. That bridge is ahead of us...

I foresee one future problem...how do we know when she is better (or flaring again) given that she is essentially asymptomatic, except in terms of blood tests and visual inspection via colonoscopy?
 

my little penguin

Moderator
Staff member
Long term een is great on paper
But an active teen - means it has social /psychological implications
As an adult try going to work (with food but not eating it (doughnuts cakes etc...)
Being home when food is cooked the smell makes your mouth water
The desire to eat is strong for a reason
Try shakes only for one weeks and adult then reassess
Three year old yep not as big a deal
But many kids who don’t have a choice due to Eoe develop psychological problems
Sneak food etc...

As far as imuran most Gi in the US no longer use it in kids due to the high risk of lymphoma
They use methotrexate instead

Remember her immune system is over active
Immunosuppressants calm it down to close to a normal level

They are a necessary evil to this disease no matter how you slice it
Either immunosuppressants or biologics

Long term een is not really an option

Some studies in the US Use 80/20 or 90/10
Basically 90% calories from formula /10% solid food
Or 80% formula /20% food

Those are a little more doable
But still difficult and some kids don’t stay in remission on them

My kiddo has done een 3-4 times since dx
Each time it’s a little harder and less effective

Just try the een as an adult for a week
And then decide
It takes more than will power

One last point
Een is hard in the body (high sugar ) so at risk for tooth decay , diabetes , yeast infection , bacterial over growth
Etc....
Nothing is without risk
Not even Tylenol that’s given to infants (causes liver failure ,Steven Johnson’s syndrome and death )

It hard in the beginning
 
Hi MLP,
Thanks for your support and tips. I didn't know about the kick-in times for meds so I will ask the doc.

I can see that EEN needs longer than 6 weeks, that is just the start. Normal is unlikely to return for much longer, and then it might be a new normal which doesn't have gluten or dairy. Ho hum...

I think we may be lucky to have got onto the problem when we did. Although we don't know for sure, I am guessing she picked up a bug when she went to China in October 2017 for 5 weeks. It was a few months after this trip that the anal fissures first appeared.
 

my little penguin

Moderator
Staff member
You don’t need to stop gluten or dairy unless those are triggers for your kiddo
Ds did een for 9 weeks the first time at age 7
Through holidays etc ....
We have used gluten free dairy free meat free you name it free (Ds has life threatening food allergies as well )
Nothing makes a difference
We follow a modified diet
50% elemental formula
Prescription probiotics
Mostly crohns exclusives diet (see post study )
Plus meds

Checks for disease activity
Fecal cal
Blood tests
And scopes /imaging as needed
 
Welcome TraceyA. You found yourself a very helpful forum here. I don't have a lot of experience as my son was diagnosed August 2018 at age of 19. I was overwhelmed by the thought of biologics for him but as you become more familiar with the medications, they become less scary. I have been learning everything I can since learning about his diagnosis. This forum has helped me immensely. There are a lot of knowledgeable parents here to help. :)
 
I know about how hard the food thing is. I went on a weight loss program. It was hard but I got results and was motivated to not eat carbs. I still am. She saw the benefits with me so that helps to motivate her.

My daughter is very smart and she knows that cheating will be detrimental. She has supportive friends and will cope in the short term. She has survived one party this week and resisted the chips.

This first week has been exam week at school so the usual activities have been all over the place. We have one more week of term then 3 weeks holidays. She is going interstate with friends for 4 days and is determined to stay with the program.
 

Maya142

Moderator
Staff member
EEN can be very tough but I'm SO glad to hear your daughter is doing well with it! That's wonderful!

I'd advise you to take it one step at a time. The doctor suggested Imuran because she has an immune system that is in overdrive. But you are right that immunosuppression is a side effect. There are other drugs that are less immunosuppressing - biologics are much more targeted. In the US, biologics are now being used first (called "top down" treatment) to get the disease and associated inflammation under control quickly. The goal is to prevent complications like strictures, fistulae, abscesses, slowed growth, low bone density etc.

The other method is called "step up" and you typically start with immunomodulators like Imuran or Methotrexate first. If those are failed, then you move onto biologics. The downside is that your child might develop complications while you're trying to figure out whether MTX or Imuran will be enough to control the disease. They are, for some kids. But others need biologics.

Typically either Imuran/MTX/6MP or biologics are started when EEN or steroids are started. That's because like some parents mentioned above, they take a long time to kick in. Imuran takes 3 months or more (our GI said it can take as long as 6 months). MTX 2-3 months. Remicade 6 weeks or so, sometimes longer, sometimes shorter. Humira can take 3 months or more. Entyvio takes 6 months or more.

EEN is mostly used to get the disease under control and to help with gut healing. A maintenance medication is necessary to keep the disease controlled.

In the 6 years I have been on this forum, there hasn't been a single child that has done long-term EEN. By that I mean 100% formula, 0 food - that's very hard on kids and can be quite isolating. There are some kids who are able to do 80% formula/20% food but even then it's typically not indefinite. Supplemental EN is much more common, but that's usually in addition to food, to help with growth and weight gain and there is some evidence it also helps with disease control. My daughter did 60% food and 40% formula for quite a while - she used an NG tube first and now has a more permanent feeding tube. She had been severely underweight and malnourished and resisted a feeding tube for a long time. But it REALLY helped her - she felt better, gained weight and finally got proper nourishment.

She did still need medications to control the Crohn's. In her case, Imuran failed, so she is on a biologic and doing great on it.

In terms of knowing if your daughter is flaring, there are blood tests and stool tests (Fecal Calprotectin) that can tell you if there is inflammation in the gut. If those are positive for inflammation, then typically imaging is done - scopes or an MRE or a pillcam.
 
Thanks Maya.
Just wondering- how often should we get blood tests done? And should I ask for a stool test?
I get the feeling that I need to be proactive about these things since the doctors are looking after multiple patients, many of whom are no doubt much sicker than my daughter.
 

my little penguin

Moderator
Staff member
Depends on the meds
No meds just een or type of med
Bloodwork in the beginning for 6-mp/imuran is every 2 weeks for the first three months then every 2-3 months
Other meds vary in the beginning
Most kids after the beginning get bloods done every 3-4 months and fecal cal same
Gi have standing orders abd are used to this
They stay on top of it for you
 

Maya142

Moderator
Staff member
Typically every 3 months - sometimes more frequently if your child is really sick or as you start a new medication. With Imuran, we had to do weekly blood work for a while, then biweekly, then monthly and finally every 3 months. Imuran can be hard on the liver and it can also cause your WBCs to drop, which is why kids are monitored so closely. Honestly, Imuran is being used less and less in the US - it's considered less safe than Methotrexate or the biologics. Most pediatric GIs are moving away from using it.
 
5 Week Update

Six weeks of EEN is almost done, less than a week to go. Ali has stuck to the program 100%. It definitely helped having a large variety of formulas and flavours. She has Fortisip Compact, Fortisip Original, Resource 2.0 Fruity, Resource 2.0 Milky, Ensure and Sustagen. There are varieties of vanilla, strawberry, chocolate, banana, coffee, berry and peach. The dietician organised for us to access bulk purchase. The cost was about AU$500 for around 7 weeks of nutrition.

I made Chicken Bone Broth and Beef Bone Broth and froze in portions. She has a bowl with the family for dinner. I made packet Jelly which she has every day or so. She also had peppermint tea, water, barley sugar, boiled lollies and lollipops.

She has maintained her normal, healthy weight of 55kg.

Blood tests at Week 5 (Jul 5) show CRP at 21 (down from 54) and ESR at 5 (down from 31) taken on May 1. The ESR is normal and the CRP is still a bit high but she had an infected toe at the time of the test so that might interfere. The toe needed to be treated with 5 days of antibiotics, which have taken away the infection but hopefully haven't brought on any side effects.

The iron levels are all normal thanks to the two infusions. Vitamin D is good at 92 (was 51) from 2 caps per day. B12 is 49 (was 38).

The anal fissures are still not better. They have begun to heal but then the period comes along and the constipation which causes them to open up again. She has had Levlen for one month now and after this period she is going to take it continually for three months to hopefully avoid the period side effects. There was a definite reduction of pain this time.

Now the plan is to reintroduce one low fibre meal and gradually build up to more normal intake over the next two weeks. She will still have the formula as snacks for a few months. There are no tough food restrictions, but avoid spicy, processed, indigestible foods.

We don't see the specialist for a few more weeks so still don't know what (if any) meds might be needed.

In summary, EEN treatment seems to have been successful for inducing remission of Crohn's without any major side effects.
 

my little penguin

Moderator
Staff member
Glad she is doing so well on een
Once food is reintroduced though
The inflammation will come back Unfortunately
And meds for crohns take time to work
As in months to work
Normally you do een with meds so when the een is done the meds have kicked in some

Most ped Gi use methotrexate
(They no longer use 6-mp/immuran in the US due to lymphoma risk )
Methotrexate takes 12 weeks to be effective
So either it’s back to een again for that time or steriods
6-mp/immuran takes 3-4 months
Remicade takes 6 weeks
Humira 3-4 months


5-asas (sulfanizine and Pentasa) are not recommended as monotherapy for crohns since they act as a cream on the top layer of the intestine
But crohns afffects the entire thickness
So only good for UC

Good luck
But the healing from een does stop once food is reintroduced unless your doing 80-90% formula and 10-20/% food

There is the crohns exclusive diet which helps a few
That is food plus formula
Otherwise regular food with formula as snacks won’t stop the inflammation from coming back

Ds has stayed on formula plus food for 9 years
Helps with growth /weight
But still needs meds
 

Tesscorm

Moderator
Staff member
My son was diagnosed at 16... his initial treatment was 6 weeks EEN (3000 cal/day) of elemental formula (he used NG tube). This took him into clinical remission. No outward symptoms. He gained back all the weight he had lost (plus some), the fatigue and paleness went away... he was back to playing lots of hockey and hanging out with friends. As he was being treated at a children's hospital and he was fairly stable, I think his ped GIs were happy to keep him stable until he was transferred to an adult GI (less than a year away). So, his maintenance treatment was 1/2 the dose of EN (1500 cal/day), 5 nights per week (he did it overnight as he used NG tube) and he was allowed to eat whatever he wanted during day (aside from seeds, nuts, popcorn, etc.)

He felt and looked even better.... but MRIs continued to show simmering inflammation. Bloodwork fluctuated... sometimes normal, sometimes just outside of normal...

But, upon transferring, his adult GI was adamant that partial EN was not sufficient treatment, as proven by the simmering inflammation shown on MRIs. he said there was no way to know when things would worsen and, once they did, they 'could' worsen quickly. My son did not want to risk surgery... and, as he was feeling well, he didn't want that to change. He agreed to start on remicade. It's now been approx. 6 years.

He's felt well throughout, he's had two unrelated surgeries (due to injuries) and remicade had no impact on recovery. He's had some infections (respiratory, skin rash, etc.) - whether they were related to a suppressed immune system or from living in residence during university, who knows??

I dreaded the decision at the time but he's done well and has had no crohns issues since. And, MRI's and scopes have shown full remission.
 
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