Biopsy results

[AlexIta]

Hello,

Got the biopsy results, he has crohn's on some part of his bowel.

Tuesday we are going to the hospital and we start Elemental diet.
Glad we got an answer but we are very scared; We don't know what to do.

Anyone could suggest anything to read about crohn's? I would really appreciate that.

We are shocked, how children so young can develop this disease.

 

[pdx]

So sorry to hear about the biopsy results, but yes, it's good to have a diagnosis and be able to move forward with treatment. Most of the reading that I've done on Crohn's has been here on this forum--it's been very helpful to me both in terms of learning about IBD and getting support.

An elemental diet really helped my daughter while we were waiting for her maintenance meds to start working. I hope that it works well for your son too.

 

[Sascot]

Sorry to hear that. My son did the EN via NG tube for 8 weeks and it really helped. Hope it goes well. We really just read the leaflets the hospital gave us and I soaked up info from this forum.

 

[Mehita]

The CCFA site is a good resource, but I get most of my information here. Your next big decision is likely going to be what maintenance med to put your son on. The elemental diet is the first step to getting his disease under control, but you'll need a maintenance med to keep it under control and in remission.

If you have any questions, feel free to ask. We're here for you and will get you through this!

 

[AlexIta]

Do you always have to use a NG tube for the EN?
He will be on EN for 6 weeks.

How do you decide the maintenance med? Do the doctors give you some choices?
I have no idea what will happen.

 

[my little penguin]

Ds drank his EEN orally for 9 weeks
He was 7 at the time so he didn't realize he had a choice
I bribed him heavily
He got money for every week he finished
We didn't set an end date - too hard that way.
He drank peptamen Jr and took two hours to drink the first one
Cried the whole time but he did it
It tastes foul
Keeping it cold and straws help by pass the taste buds
I also pinched his nose so he didn't have to smell it
First few days were very hard
Then it got easier
He chewed lots of crushed ice with table sugar on it
And didn't have to sit with us at the dinner table
He still supplements with peptamen Jr fail 4 years later and is at above average eight and weight - thanks to formula I am sure

Maintence meds
Some docs give you a choice some don't
Sometimes insurance dictates what you use
There are tiers
5-Asa ( Pentasa liadia ,asacol etc)
Mildest and least likely to be effective for crohns
Most Gi equate it to using a aspirin for a brain tumor not going to hurt but not going to help either .

Then immunosuppressants ( most kiddos need at least these )-6-mp/Aza/methotrexate (Mtx)
They sound scary but for crohns have been around a long time and somewhat effective but don't lower surgery risk ( risk is 75% within 5 years of dx )
They do increase skin cancer risk and lymphoma risk
But risk of untreated or under treated crohns is
Deadly so ....
They take 3-4 months to be effective for 6-mp/Aza
8 weeks for Mtx

Last are biologics ( remicade humira)
Some are Afraid of these ( not good to fear drugs )
No increase in T cell lymphoma when used alone
But when used in combo the risk is only 6 in 10000.
Biologics are the most effective but the most expensive so insurance coverage gets tricky

Ds started remicade at age 8 after starting each of the above lower drugs which didn't work and spent a year miserable
So I am very bias towards biologics
They turned my kiddo normal again
Other meds had side effects like flu like symptoms etc.,
Biologics did not


Remicade takes 6 weeks to be effective for most
Took 7 for Ds

Humira takes 3-4 months to be effective

To put risk in perspective
In the us risk of dying for those under 14
By car 1 in 250
By drowning 1 in 1000
To get T cell lyphoma without any meds or inflammatory bowel disease average joe on the street 2 in 10000

So we all take risks
Tylenol is a risk - causes liver damage and Steven Johnson syndrome but it's given to infants daily since those risks are low


It's a lot to take in
I was bound and determine my kiddo would just stay on EEN forever and never take the evil meds

But as the Gi told us when Ds was dx not to long ago to treat crohns
They had
Pred
Pred
And more pred so options and lives were very limited

Options are good even scary options
Since once you find something that works for your kid
Everything looks rosy again


Hugs

 

[Mehita]

I think it depends on how elemental you're going. If you're going to the hospital to start it, I'm assuming you're doing tube and pretty elemental. Most of the more elemental "drinks" aren't very palatable from what I hear. My son did Boost/Ensure for three weeks, but they're much more drinkable. I'm sure someone else with more experience will reply soon. We've never done tube feedings.

Usually, based on what the GI has seen or knows about your son's case, the GI will present you with a couple medication options. Some do the bottom up approach (lesser drugs first, then working up to biologics) and some do the top down approach (start with biologics). It really depends on your GI and where your son is at. Keep in mind that simply being a child with IBD tends to put his disease in a more severe category. Some studies are indicating that top down works best for kids to get the disease under control as quickly and efficiently as possible.

Bottom up:
5-ASA's: Pentasa, Lialda, Asacol, etc.
Immunomodulators: Imuran, Azathioprine, 6MP, Methotrexate
Biologics: Remicade, Humira

Personally, we did the bottom up approach and nothing worked for my son until he got to Remicade. I regret all the time we spent on the other meds (years!) because it was during prime puberty growing time and now he's very small for his age. I see how well Remicade has worked for him and kick myself for not going there sooner. Do your research, but try not to let your fear of the drugs take away from his chance to get better. Ultimately, the decision is always yours, but your doctor has a lot of experience and knowledge too so if s/he suggests something, he's not doing so lightly. The trouble is that IBD is so different for each person, kids even more so, and it's really just trial and error until you find what works for your son.

I think what a lot of parents get stuck on with the medications is worrying about the side effects. MyLittlePenguin has some good stats that she can throw out when she's around next.

Something else to start thinking about (if you're in the US?) is a 504 plan for school. Totally worth the time and effort to get one established.

Keep tossing the questions out...

 

[AlexIta]

I am a bit scare, a lot scare.

The doctor told has he has granulomas in his colon which is a typical sign of crohn's.

However, I am still puzzled he does not have any symptom, he could be asymptotic, I don`t know if this is good or bad; we are really confused.

 

[Maya142]

Some kids are able to drink formula and others are not. My daughter has tried MANY formulas - both semi-elemental and elemental. The semi-elemental ones are "drinkable" according to her but she was never able to drink enough to gain weight. She drank two Peptamen Jr a day, but it just was not enough so we eventually went to an NG tube.

The NG tube sounds very intimidating, but kids get used to it surprisingly quickly. Big kids - like teenagers - often place the tubes themselves every night and pull it out in the morning. That way, they do their feeds overnight and no one at school has to know. With little kids, the NG tube is usually placed at a hospital and they keep it in for however many weeks they're doing EEN.

The first two nights were very hard for my daughter, but after that she got used to the tube and was fine. The first night her nose and throat were quite sore, so be prepared for that. I was surprised at how fast she got good at inserting it herself.

Now she says a tube is MUCH better than drinking formula and she will never drink it again.

She is now on Neocate which is an elemental formula. Elecare is another one. She tried to drink both but just could not. However, there are kids who are able to, so it really just depends.

Sorry to hear about the diagnosis but glad you have some answers. Hang in there - typically the first few months are the hardest and most overwhelming. You will find a "new normal" eventually.

There are many parents with kids who are asymptomatic or only have mild symptoms on here. Unfortunately, symptoms do not always correlate with disease activity - some kids are completely asymptomatic yet have lots of inflammation in the GI tract. Crohn's is very tricky!

Good luck!

 

[Clash]

My son is asymptomatic now with active disease from ileocecal valve to throughout colon. But he started initially with symptoms. Not so much diarrhea but he had fatigue, mouth ulcers, some abdominal pain, night fevers.

 

[crohnsinct]

sorry about the dx. Granulomas do not mean anything more serious. The only thing it means is that the crohns dx is more definitive.

If you go on YouTube university of Michigan hospital ibd center has a short video series called ibd school. Each video is about 5-6 minutes and the information is presented very well.
Give yourself time. It will all fall Into place in time.

 

[Food4Thought]

I'm so sorry to hear about the diagnosis. I was there 8 weeks ago. It's very scary, it's overwhelming, it's like a new world now. This forum was a good help to me. However, I regret reading too much early on, because some of the stories can be even scarier than what we're experiencing.

My son seemed to have no symptoms, no aches, no tummy pains. He just didn't eat much. But after diagnosis, we realized he'd had subtle symptoms for over 4 years... it was just "normal" for him. Now that he's healing, he understands the difference between feeling good and not feeling good.

Just do what you need to day by day. And please take care of yourself too, and try to make sure you're getting rest when you can. The next few weeks will feel like a whirlwind, but you'll make it. Hang in there.

 

[CrohnsDadNJ]

How old is your child? For very early onset Crohns, you should also see an immunologist to make sure that the Crohn's symptoms are not caused by any immune deficiency. Granulomas in biopsy are an indication of Crohn's, but in very rare cases (only about 25 detected per year) can also be caused by an underlying immune disease called CGD. We were lucky to have a couple of good pediatric GIs who suggested we get S checked out by a pediatric immunologist, and we we had to undergo a battery of blood tests to get the all clear. Hugs and prayers to your family!

 

[AlexIta]

Asked for an immunologist we will get one to exclude other things. M has mild moderate crown plus no inflammatory markers in his blood only high plates ( but still ok). Because M is asymptotic it looks like we have to check is Fc often.

 

[crohnsinct]

That is how we follow my mostly asymptomatic daughter. Nothing shows in her blood markers but FC tells the story.

Hope your treatment of choice works well to control the Crohn's!