My son is 21, Newly Diagnosed with Crohns

[Unique]

Hello,
I am feeling lost at how best to help my son navigate through this.
There’s so much to learn and its overwhelming.
The GI he has does not have a focus on CD. He was just the first available in our area, so we chose him. He did not perform the colonoscopy which showed severe inflammation and strictures. Bloodwork and biopsy gave a Crohns diagnosis.
He prescribed Prednisone for a month and now my son starts his first Humira injections tomorrow.
I’m wondering if we should seek a second opinion with a doctor that specializes in CD or stick with this GI for a time.
Not sure if this is the correct place to be posting since he is not a child. He lives with me and needs help with comprehending medical stuff like medicines, nutrition, etc.

 

[my little penguin]

Any and ALL parents are welcome
There are quite a few parents of adult “children “
So welcome

my child’s first Gi did not specialize in crohns or ibd . He saw that Gi for 8 years
Second Gi (due to moving ) specializes in very early onset ibd (Ds was dx at age 7)

we did not see any real difference between the two .
Treatment approached vary by doc
Some are more aggressive
Some like more tests
And some only big IbD docs like to treat complicated cases and mostly ignore their normal ibd patients
It’s a mixed bag

humira takes 3 months to work
Did he just start prednisone as well ?
Will he still ge on pred till the humira kicks in ?

most Gi who handle the case are not the ones who happen to do the scope
In fact Ds Gi fro when he was little only did his scopes twice out of 8 times …

second opinions are easy to get
As long as you and the Gi are communicating and the Gi is listening you that is the important thing

 

[Unique]

@my little penguin
He was on predisone for one month- just finished and not sure if he will be on more. I should have went in to appt with him to get more details. Definitely will from here out. Doc spoke with me briefly on the phone and said he suggested to my son that he could couple the Humira with another drug but said son declined. Maybe because he didnt like what the possible effects could be. I’m still learning all the technical jargon on this forum, but read something about others on mtx( sp?) and/or other meds while on Humira. Also, will inquire about getting connected with a nutritionist because all the Doc said was to eat a healthy diet. He also didnt respond to my son’s inquiry sbout what if any pain meds he can take.

 

[Unique]

Any and ALL parents are welcome
There are quite a few parents of adult “children “
So welcome

my child’s first Gi did not specialize in crohns or ibd . He saw that Gi for 8 years
Second Gi (due to moving ) specializes in very early onset ibd (Ds was dx at age 7)

we did not see any real difference between the two .
Treatment approached vary by doc
Some are more aggressive
Some like more tests
And some only big IbD docs like to treat complicated cases and mostly ignore their normal ibd patients
It’s a mixed bag

humira takes 3 months to work
Did he just start prednisone as well ?
Will he still ge on pred till the humira kicks in ?

most Gi who handle the case are not the ones who happen to do the scope
In fact Ds Gi fro when he was little only did his scopes twice out of 8 times …

second opinions are easy to get
As long as you and the Gi are communicating and the Gi is listening you that is the important thing

Thank you for your response and gracious welcome

 

[my little penguin]

So no pain meds
Since the pain is from inflammation
Inflammation goes down and the pain goes with it
Pred for more than 5 days requires a wean
Typically
you start at 40 mg for 7 days
Then wean to 35 mg for 7 days
And so on
Till you get to 5 mg then 7 days abd off

you can’t just stop prednisone you have to wean slowly
So hopefully he did tgat

humira typically can be combine with methotrexate (mtx) or imuran/6-mp
Most pediatric Gi use humira plus methotrexate since imuran or 6-mp have a higher risk of lymphoma
Methotrexate means little to no alcohol (some adults Gi permit more ) due to it irritating the liver all on its own


a lot of folks (adults and kids alike ) use humira on its own
Some need mtx boost
Others don’t
Ds started humira on its own
It want until he developed juvenile arthritis that methotrexate was added to humira

tough when you kiddo is the adult
But not a true adult yet .

hugs

 

[Maya142]

Hi and welcome (but sorry you have to be here!).
There are many of us here with "grown-up" kids. My daughter was diagnosed at 16 and is now 24. All are welcome .
A second opinion is a good idea - I think it would help to see a GI who specializes in IBD. You don't necessarily have to switch to that doctor, but a second set of eyes on the situation doesn't hurt. It will give you a different perspective or will confirm that what your current GI is doing is the right plan.

It sounds like he has been taken off steroids too soon - before giving the Humira a chance to kick in. Typically, steroids or Exclusive Enteral Nutrition (also known as EEN - formula that replaces meals, like Ensure, Boost or Peptamen) are used to induce remission. Medications like Humira or Remicade are used to maintain remission. Humira can take 3 months to kick in (or even longer in some cases), so using steroids or EEN will help with pain and symptoms by getting the inflammation under control quickly. Typically, both steroids and Humira are started at the same time, and then steroids are slowly tapered once Humira starts working. For some kids, Humira works very quickly - in a few weeks. For others, it can take months. It's very individual.

For pain, heating pads can really help. Thermacare wraps can be found over the counter and can be worn under clothing. Is your son working or in college? Where is the pain? Do you know where he has strictures?

Especially in the beginning, when there is a learning curve, it can really help to have someone accompany him to appointments. It's a LOT of new info that is thrown at you and can be overwhelming. Take it one day at a time.

I'm going to tag some other parents, to see if they can offer more words of advice - @crohnsinct @Pilgrim @Jo-mom @pdx

 

[Jo-mom]

Welcome to the forum. My son was diagnosed at 19 (now 23) although he most likely had crohn's for a few years before diagnosis. I, too, wasn't familiar with any of the jargon and learned mostly from reading posts on this forum. It is a wealth of knowledge. My son is on Remicade and is doing well. He was on Budenoside (steroid) when starting and probably should have been on it longer as a bridge as he went to a pretty bad flare when we were still figuring out dosages for Remicade, so a bridge of steroids can play an important role while the main drug kicks in fully.

It was very daunting at first but you will understand how things work. Knowledge is power! As you can already tell, these parents are amazing with their experiences and if you ever have a question or need to vent, this is the place to be. Hugs.

 

[Unique]

Hi and welcome (but sorry you have to be here!).
There are many of us here with "grown-up" kids. My daughter was diagnosed at 16 and is now 24. All are welcome .
A second opinion is a good idea - I think it would help to see a GI who specializes in IBD. You don't necessarily have to switch to that doctor, but a second set of eyes on the situation doesn't hurt. It will give you a different perspective or will confirm that what your current GI is doing is the right plan.

It sounds like he has been taken off steroids too soon - before giving the Humira a chance to kick in. Typically, steroids or Exclusive Enteral Nutrition (also known as EEN - formula that replaces meals, like Ensure, Boost or Peptamen) are used to induce remission. Medications like Humira or Remicade are used to maintain remission. Humira can take 3 months to kick in (or even longer in some cases), so using steroids or EEN will help with pain and symptoms by getting the inflammation under control quickly. Typically, both steroids and Humira are started at the same time, and then steroids are slowly tapered once Humira starts working. For some kids, Humira works very quickly - in a few weeks. For others, it can take months. It's very individual.

For pain, heating pads can really help. Thermacare wraps can be found over the counter and can be worn under clothing. Is your son working or in college? Where is the pain? Do you know where he has strictures?

Especially in the beginning, when there is a learning curve, it can really help to have someone accompany him to appointments. It's a LOT of new info that is thrown at you and can be overwhelming. Take it one day at a time.

I'm going to tag some other parents, to see if they can offer more words of advice - @crohnsinct @Pilgrim @Jo-mom @pdx

I am not sure where the strictures are. His colonoscopy pictures look a little alarming to me because I’ve had a few colonoscopies over time and my 50+ year old colon with diverticulosis looks healthier. Breaks my heart to see. There appears to be ulcerations and lots of inflammation. He lives at home and has a job. I just got off the phone with a nurse and requested we get an appt. with his GI before beginning the Humira to see if he should be also doing something else in conjunction. So, tomorrow he sees Doc and then get his ‘teach’ later this week after getting more info as to what may be going on. Not sure how soon we could get into see a second opinion, nor who to choose in our area. We live in the Seattle area.
I sure appreciate this forum and the people like you, who have responded. Very Thankful.

 

[Unique]

Welcome to the forum. My son was diagnosed at 19 (now 23) although he most likely had crohn's for a few years before diagnosis. I, too, wasn't familiar with any of the jargon and learned mostly from reading posts on this forum. It is a wealth of knowledge. My son is on Remicade and is doing well. He was on Budenoside (steroid) when starting and probably should have been on it longer as a bridge as he went to a pretty bad flare when we were still figuring out dosages for Remicade, so a bridge of steroids can play an important role while the main drug kicks in fully.

It was very daunting at first but you will understand how things work. Knowledge is power! As you can already tell, these parents are amazing with their experiences and if you ever have a question or need to vent, this is the place to be. Hugs.

Thank you! Yes, in hindsight, it appears it was going on for awhile. It’s disheartening to think about. “Shoulda woulda coulda” and the ‘what if’ we had caught it earlier isnt productive now, but can’t help feeling that way.

 

[Pilgrim]

I feel for you with the parent guilt.

You've had a lot of solid advice already but I wanted to add that if he has strictures the dietician may be able to help him figure out what types of foods to avoid while he is healing. If he has lost a lot of weight, then incorporating some calories from Ensure or Boost can really help recover calories and nutrients and aid healing. Also a good topic for the dietician.

Humira really helped my kiddos for years.

 

[Unique]

I feel for you with the parent guilt.

You've had a lot of solid advice already but I wanted to add that if he has strictures the dietician may be able to help him figure out what types of foods to avoid while he is healing. If he has lost a lot of weight, then incorporating some calories from Ensure or Boost can really help recover calories and nutrients and aid healing. Also a good topic for the dietician.

Humira really helped my kiddos for years.

Thank you, @Pilgrim
Yes, the weight loss is so heard to see. He was already thin and to see his clothes hang baggier and the pain and all the other stuff…I get very emotional.
He is supplementing what I cook with Boost High Calorie I found on Amazon. Do you know if there’s a prescription for such that insurance may cover? So hard to know what to cook that won’t cause further harm.

 

[Jo-mom]

I can really relate to your feelings about how difficult it is to see your son lose weight when already thin. My son was the same - he was already thin and went down to 109 lbs on a 5'8" frame. It was so difficult to see, but I can say this, once the medication starts working, he will gain his weight back and then some. My son is currently 146 to 150 lbs and looks great. Yours will too. Hang in there.

 

[my little penguin]

Your Gi needs to write the script for formula - it can be boost ,peptamen (semi elemental ) ,ensure , or any other brand
This is submitted to your durable medical equipment company covered by your insurance as infusion supplies under the medical side of your insurance.
The prescription side does not typically cover formula

my kiddo continues to supplement his diet with three boost Max shakes a day from target.
prior to that insurance covered peptamen jr and later neocate jr for years for him .

when we dropped the neocate jr he lost weight (close to 10 pounds )
So back to boost three shakes a day plus food
Gained back the weight and starting to add some finally .


try not to get formula from Amazon since you don’t know how it was stored or who etc

 

[Pilgrim]

Thank you, @Pilgrim
Yes, the weight loss is so heard to see. He was already thin and to see his clothes hang baggier and the pain and all the other stuff…I get very emotional.
He is supplementing what I cook with Boost High Calorie I found on Amazon. Do you know if there’s a prescription for such that insurance may cover? So hard to know what to cook that won’t cause further harm.

I am in Canada and haven't had luck getting formula covered here unless it is put through a tube. BUT I have an amazing dietician who orders through the hospital at such a good price. If you can get a deal like that it helps. You can also use a store brand/off brand of a plus calories formula for less money. It should have around 350 calories per bottle. The CDED diet helped both of my Crohn's kids. In a nut shell: 2 eggs, 1 chicken breast, 2 bananas, 1 apple, 2 potatoes cooked and cooled then reheated. Unlimited white rice. Apple and potatoes peeled and apple cooked soft for a stricture. A few other allowed items but not many.

 

[my little penguin]

Please be careful with the “plus higher calorie formulas
The osmolality is higher and harder on the gut
For some folks they are fine with the higher osmolality
But others it can cause Gi upset
My kiddo was one of those
Could only handle broken down formula at 1.0 (250 cal )
Just something to be aware of before you purchase /order a larger amount
It may say 1.5 on the bottle (as higher cal 350 ) vs 1.0(250 cal )
Gi should have free samples to try as well in the clinic

 

[Pilgrim]

It used to bother H to have the higher calorie formula, but it works for her now. She needs an additional litre of water to counter the osmality but she is managing fine.
It is best to work with an RD.

 

[Unique]

Your Gi needs to write the script for formula - it can be boost ,peptamen (semi elemental ) ,ensure , or any other brand
This is submitted to your durable medical equipment company covered by your insurance as infusion supplies under the medical side of your insurance.
The prescription side does not typically cover formula

my kiddo continues to supplement his diet with three boost Max shakes a day from target.
prior to that insurance covered peptamen jr and later neocate jr for years for him .

when we dropped the neocate jr he lost weight (close to 10 pounds )
So back to boost three shakes a day plus food
Gained back the weight and starting to add some finally .


try not to get formula from Amazon since you don’t know how it was stored or who etc

Thank you. Will talk to doc about that for sure.

 

[Unique]

I am in Canada and haven't had luck getting formula covered here unless it is put through a tube. BUT I have an amazing dietician who orders through the hospital at such a good price. If you can get a deal like that it helps. You can also use a store brand/off brand of a plus calories formula for less money. It should have around 350 calories per bottle. The CDED diet helped both of my Crohn's kids. In a nut shell: 2 eggs, 1 chicken breast, 2 bananas, 1 apple, 2 potatoes cooked and cooled then reheated. Unlimited white rice. Apple and potatoes peeled and apple cooked soft for a stricture. A few other allowed items but not many.

That is mushed/blended up together and all they ate everyday or Is that just an example? Hopefully, we can be connected with an RD soon!

 

[my little penguin]

https://www.ntforibd.org/what-is-nu...rapeutic-diets/crohns-disease-exclusion-diet/Cded is a diet of limited solid foods (above)
With formula in the beginning
Then just limited solids foods later

 

[my little penguin]

https://www.gastrojournal.org/article/S0016-5085(19)36714-9/pdf

 

[my little penguin]

https://crohnsforum.com/threads/new-diet-ibd.71686/

 

[Unique]

My son just told me he has been constipated firca couple days, and has blood when he goes. How serious is this and what does one take for relieving constipation and what to eat or not eat.

 

[my little penguin]

Blood could be crohns ??
Could be hemorrhoids from straining ??
Find out if it’s dark red ,light red , or black tarry
On the outside of the stool
Mixed in the stool
Or blood in the toliet water or toilet paper when wiping
Find out what Bristol stool number
How many times a day it’s happening and if he has to go but nothing comes out

call the Gi on Call they can recommend what can be used
Ds has constipation as part of his crohns so he takes miralax daily and has for 11 years (since age 7)
But his Gi may want a mini clean out which uses other stuff to break up anything stuck in there
Everyone is different though

 

[Maya142]

We have used Milk of Magnesia or Miralax - both are available over the counter. If it's just blood on the toilet paper, it's likely to be from a fissure or hemorrhoids. If it's mixed in with the stool that's more concerning than if it's on the toilet paper. If it's black or looks like tar, that's definite call to the on-call GI ASAP (even on Christmas eve) - we've always been told that a trip to the ER is necessary for that.
For constipation, be careful about what you do to his diet. People always say "add fiber," but that can actually make things worse if your child is flaring. Crohn's in the small bowel (including the terminal ileum) can cause constipation. Definitely make sure he is hydrated and drinking plenty of water - that helps.