"Never think about Crohn's"

[Carolina*]

I have been reading a variation of that sentiment fairly often when people are reassuring others about starting Biologics, etc. It's been nagging at me because I think about Crohn's every single day and I need reassurance please. My daughter was diagnosed in October and was prescribed Lialda (she is favoring Crohn's but it is confined to the colon only at this time). By the time she had the colonoscopy/MRE and was diagnosed she was no longer having outward flare symptoms so she started on medication with that advantage. Her FCP was 178 at the time of diagnosis and at her 2 month follow-up it was 68 (range 0-120, normal 0-50). Her Doctor was pleased with that and we are continuing on Lialda.

I know mesalamine is not supposed to work on Crohn's so I suppose that nags at me a bit too. I do think hers presented like UC but was patchy like Crohn's and perhaps that is why she is having success with it. I do worry about whether we are doing enough though. I would say she complains of a stomach ache every week or 2 and I can't help but freak out. It will generally only last a few hours, but it always sends me into a panic that things are going on we can't see. She was diagnosed with Celiac Disease at the same time as Crohn's so I suppose the stomach upset could always be related to that too. Her coloring is still pale too, so every time she looks "off" that way it concerns me.

I guess I would just love some reassurance we are doing enough. It eats at me every time I read that people don't think about Crohn's until the infusion day. I think about it constantly. I do recognize we are still very much new in our journey so maybe I'll be more relaxed in time.

 

[my little penguin]

Big hugs
Tough spot to be in
Kids with Crohns shouldn’t be pale or exhausted etc...
If they are on the right med.

Crohns is patchy
UC is not
So while you can have Crohns Solely in the large intestine (Crohns colitis)
There may be other things going on

We Ds was first dx
He was on pentasa (another 5-asa ) for a month
He was pale /vomiting and had no energy
A second opinion finally convinced his regular GI that the kid needed more despite looking mild by the numbers /scopes
They moved to 6-mp
Again numbers looked ok
No blood or diarrhea
But my kid was tired /pale and still vomiting
I constantly complained
But GI wouldn’t budge
Ds was “mild” no ulcers no bleeding no diarrhea
Bloodwork looked fine
After 8 months 6-mp started raising his liver enzymes
So GI agreed to scope and put him on mtx plus steriods while we waited for mtx the kick in
Scopes showed only mild inflammation
We tried to wean pred
But Ds kept getting vasculitis despite being on mtx
Joint /muscle pain etc.. and vomiting would return

Vasculitis they take seriously
Only then woth the help of the rheumo was Ds finally put on remicade after a year of dx despite being mild
And only then did the docs realize that was what Ds truly needed

Over the years Ds has added quite a few serious extra intestinal manifestation
Plus juvenile spondyloarthritis which makes biologics slightly easier

My point is that it’s very hard to get higher level meds when your child is “mild “
Some do not need higher level
But most studies do not support the use of 5-aza alone
Has your child gi addressed to you how they plan to treat the full thickness inflammation and keep scar tissue from forming ?

Since 5-asa can not treat the full thickness
Only the surface and inflammation is left to simmer below
It’s not a matter of mild disease
It’s a matter of the drug mechanism
It does not treat below the surface
When I point blank asked Ds GI
Why sub surface inflammation was NOT being treated
Suddenly 5-asa were not a good stand alone treatment

I highly doubt your Dd will be in biologics
But sub surface inflammation is not being addressed by 5-asa
And that may Be why she looks off

Mtx is a good mid level drug that a lot of mild kids have success on

It’s hard in the beginning
Pushing for what you and your child need
But you will get better at it
Took me well over a year or more before I felt confident and comfortable asking the tough questions

 

[my little penguin]

I did want to add
It’s not that the 5-asa doesn’t reduce the symptoms because it can
Hence the lower fecal cal
But the stool only touches the surface
Not the sub surface which is not being treated
So on paper things would look better

Definitely have you GI explain how they are treating that sub surface since every study backed by the Cochran report (tell the GI this)
Stated it can not treat the sub surface
Which is why it is not recommended for Crohns

 

[Carolina*]

Big hugs
Tough spot to be in
Kids with Crohns shouldn’t be pale or exhausted etc...
If they are on the right med.

Crohns is patchy
UC is not
So while you can have Crohns Solely in the large intestine (Crohns colitis)
There may be other things going on

We Ds was first dx
He was on pentasa (another 5-asa ) for a month
He was pale /vomiting and had no energy
A second opinion finally convinced his regular GI that the kid needed more despite looking mild by the numbers /scopes
They moved to 6-mp
Again numbers looked ok
No blood or diarrhea
But my kid was tired /pale and still vomiting
I constantly complained
But GI wouldn’t budge
Ds was “mild” no ulcers no bleeding no diarrhea
Bloodwork looked fine
After 8 months 6-mp started raising his liver enzymes
So GI agreed to scope and put him on mtx plus steriods while we waited for mtx the kick in
Scopes showed only mild inflammation
We tried to wean pred
But Ds kept getting vasculitis despite being on mtx
Joint /muscle pain etc.. and vomiting would return

Vasculitis they take seriously
Only then woth the help of the rheumo was Ds finally put on remicade after a year of dx despite being mild
And only then did the docs realize that was what Ds truly needed

Over the years Ds has added quite a few serious extra intestinal manifestation
Plus juvenile spondyloarthritis which makes biologics slightly easier

My point is that it’s very hard to get higher level meds when your child is “mild “
Some do not need higher level
But most studies do not support the use of 5-aza alone
Has your child gi addressed to you how they plan to treat the full thickness inflammation and keep scar tissue from forming ?

Since 5-asa can not treat the full thickness
Only the surface and inflammation is left to simmer below
It’s not a matter of mild disease
It’s a matter of the drug mechanism
It does not treat below the surface
When I point blank asked Ds GI
Why sub surface inflammation was NOT being treated
Suddenly 5-asa were not a good stand alone treatment

I highly doubt your Dd will be in biologics
But sub surface inflammation is not being addressed by 5-asa
And that may Be why she looks off

Mtx is a good mid level drug that a lot of mild kids have success on

It’s hard in the beginning
Pushing for what you and your child need
But you will get better at it
Took me well over a year or more before I felt confident and comfortable asking the tough questions

I so appreciate you taking the time to respond! It was my understanding that she didn't have the "full thickness" at time of diagnosis. It was explained to me that she would be textbook UC had it been continuous but it is not. I was told there are exceptions to the continuous rule of thumb particularly in pediatric patients diagnosed early and quickly, but it is rare. I don't really understand how all that works it it evolves over time or what? I think her files either says Indeterminate Colitis or Crohn's Colitis. I am going to ask about that again at her next appointment (full thickness).

I really just want to scream sometimes. Crohn's is such a bear to understand with all the variances across patients, adding the Celiac Disease piece and that she is allergic to EVERYTHING environmental year-round makes knowing what is what so frustrating. She's been pale and has allergy shiners (dark circles) for a few years, so I don't know if her palor is related to that or Crohn's. I would not say her energy level has changed, she is still dancing the same amount and plays outside all day long if she can running around.

You have hit on my concerns though, that even when things seem okay on the outside things can still be off and need more. She was last in in December and it was left for an April follow-up unless something came up before then. We see a Physician at Duke so part of a fairly large GI practice, I do feel good about her and she was our 2nd Opinion Doctor.

 

[crohnsinct]

Hugs!

How confident is your GI in the Crohn's dx? Were granulomas found at biopsy? Not that they are necessary to dx Crohn's but with solely colonic disease a clear dx could be difficult. Yes the patchy appearance usually tilts a doc towards Crohn's but I have been hearing that in some cases of UC there could be a "patchy" appearance. Sorry I am not totally up on what it is that could cause this because my daughter definitely has Crohn's.

My point being, some docs will say Crohn's rather than UC because it is better to treat it as Crohn's and find out it was UC rather than the other way around. So maybe just maybe they are trying to see if it works first. Still doesn't make sense to me because if you are assuming Crohn's then treat Crohn's.

The fop results are encouraging as would be normal blood labs. Is she gaining weight? Growing? GI's don't usually jump up and down about stomach pain as it can have a lot of other causes. I know this first hand as my second daughter's tell tale symptom is stomach pain and no one listened for three years pre dx and even for the year she was on mtx with no improvement.

It takes a while for you and the GI to figure out what "thing" is your warning sign. For some it is sed rate or CRP, others it is FCP and yet others it could be albumin or just symptoms. Some parents here know it is CRP or sed rate but even down to the point of it being normal but just not their kid's normal.

I would encourage you to have a conversation with your daughter's GI addressing your concerns but also consider a second opinion.

As for the "we don't think about Crohn's", It takes a long time to get there! With my older daughter it took at least a year and a half. Once there it lasted maybe 2 years and then she started flaring and it has been an every day thought. She went away to college so I can't really worry about whatI can't see but she is still in this flare and I do think about it every day.

My second daughter is the mild one and it took us a little over a year to get to the not thinking about is stage. But she was symptomatic for the whole first year. You get to that point when you see your child happy, enjoying life, gaining and growing and especially after that first repeat scope that shows the improvement.

I am not a worrier. I definitely think about it but don't worry as much as the beginning. I know what I am dealing with, I am smarter, I have a forum of friends, the girls are on meds so won't tank terribly and they are under the care of a doctor.

Give yourself time, talk to the GI and consider a second opinion. Even if the second opinion agrees with your GI, it will give you peace of mind.

 

[Carolina*]

Hugs!

How confident is your GI in the Crohn's dx? Were granulomas found at biopsy? Not that they are necessary to dx Crohn's but with solely colonic disease a clear dx could be difficult. Yes the patchy appearance usually tilts a doc towards Crohn's but I have been hearing that in some cases of UC there could be a "patchy" appearance. Sorry I am not totally up on what it is that could cause this because my daughter definitely has Crohn's.

My point being, some docs will say Crohn's rather than UC because it is better to treat it as Crohn's and find out it was UC rather than the other way around. So maybe just maybe they are trying to see if it works first. Still doesn't make sense to me because if you are assuming Crohn's then treat Crohn's.

The fop results are encouraging as would be normal blood labs. Is she gaining weight? Growing? GI's don't usually jump up and down about stomach pain as it can have a lot of other causes. I know this first hand as my second daughter's tell tale symptom is stomach pain and no one listened for three years pre dx and even for the year she was on mtx with no improvement.

It takes a while for you and the GI to figure out what "thing" is your warning sign. For some it is sed rate or CRP, others it is FCP and yet others it could be albumin or just symptoms. Some parents here know it is CRP or sed rate but even down to the point of it being normal but just not their kid's normal.

I would encourage you to have a conversation with your daughter's GI addressing your concerns but also consider a second opinion.

As for the "we don't think about Crohn's", It takes a long time to get there! With my older daughter it took at least a year and a half. Once there it lasted maybe 2 years and then she started flaring and it has been an every day thought. She went away to college so I can't really worry about whatI can't see but she is still in this flare and I do think about it every day.

My second daughter is the mild one and it took us a little over a year to get to the not thinking about is stage. But she was symptomatic for the whole first year. You get to that point when you see your child happy, enjoying life, gaining and growing and especially after that first repeat scope that shows the improvement.

I am not a worrier. I definitely think about it but don't worry as much as the beginning. I know what I am dealing with, I am smarter, I have a forum of friends, the girls are on meds so won't tank terribly and they are under the care of a doctor.

Give yourself time, talk to the GI and consider a second opinion. Even if the second opinion agrees with your GI, it will give you peace of mind.

Her first Doctor that diagnosed her said it was favoring Crohn's because the hepatic flexure is spared therefore not continuous like UC. She had NO granulomas, fissures or dysplasia. Her biopsy reads "diffuse chronic active colitis" everywhere but the hepatic flexure and then the cecum has crypt abscesses along with the chronic active colitis. Forgive me for the layman terms but given how large the colon is and the hepatic fixture being the bend as I see it, is it really all that patchy? He really told me not to get fixated on what we call it and basically said it was caught early and will show itself in time. The options he gave us were EEN, Lialda or Predinisone/Lialda. He thought her Celiac results were a false positive from IBD.

We saw a 2nd opinion Doctor a week later and she calls it Indeterminate Colitis. She also says it is a wait and see. She disagreed the Celiac was a false positive and approved the Lialda with a GF diet for a short time to be retested and would need to change meds quickly if not working. The follow-up is when the FCP went from 178 to 68 and she was comfortable continuing with the plan. I do wonder how much the GF diet is or isn't helping the Crohn's piece. I would think taking something that causes the body to work against itself has some small impact on the overall health.

Let me add, both discussed the step-up versus top-down approaches and both said they were comfortable with a step-up approach for her case. One other random thing I've learned, Celiac patients can have higher normal FCP too.

I forgot someone asked about weight gain. She is drinking Boost shakes daily, she gained 3lbs immediately within the first week. She has only probably gained a pound since then though. That little bit of weight brought her from the 2% on the BMI to the 5% BMI, but I do wish she would continue to gain. Her height has been steady on 75% since birth and she grew an inch between the October and December appointments. Her genes are to be thin, but she does need to gain more. She will be 11 next month, 4'8" and 70lbs.

crohnsinct, I feel like you hit on what I am trying to say. I *think* she is one of those weird cases you mention when you said this...

"How confident is your GI in the Crohn's dx? Were granulomas found at biopsy? Not that they are necessary to dx Crohn's but with solely colonic disease a clear dx could be difficult. Yes the patchy appearance usually tilts a doc towards Crohn's but I have been hearing that in some cases of UC there could be a "patchy" appearance. Sorry I am not totally up on what it is that could cause this because my daughter definitely has Crohn's.

 

[Maya142]

It definitely took us time to get to the point where we don't think about Crohn's daily. I would say about a year and that was with her on the "big meds" - Remicade and MTX. Once scopes showed she was in remission, that's when I relaxed.

I would definitely make sure she is being treated adequately - a second opinion can really help, even just for peace of mind. Especially since in most cases 5-ASAs are not used for Crohn's.

You can even do a record review at one of the big pediatric IBD centers - Boston Children's, CHOP or Cincinnati Children's. That way you don't have to make the trip but they will look at all the information and tell you what they think.

I will say that my child also had mild Crohn's - ulcers and inflammation in her terminal ileum and colon, but it wasn't terrible. We have learned through trial and error that she needs to be on a biologic for the inflammation to be under control. When she is on just Imuran (which is still a step up from a 5-ASA/mesalamine), her FCP goes up within a few months.

Also wanted to add - whenever my daughter is flaring or struggling with symptoms, Crohn's becomes an every day thought again. So it will be up and down, depending on how she is doing.

 

[Carolina*]

I did want to add
It’s not that the 5-asa doesn’t reduce the symptoms because it can
Hence the lower fecal cal
But the stool only touches the surface
Not the sub surface which is not being treated
So on paper things would look better

Definitely have you GI explain how they are treating that sub surface since every study backed by the Cochran report (tell the GI this)
Stated it can not treat the sub surface
Which is why it is not recommended for Crohns

One small victory I can say today. I can now follow everyone's responses and know what everyone is talking about. I no longer have to google or go read a study to keep up...patting myself on the back LOL!

This is exactly what I plan to ask. Question though, how do they determine the full thickness is diseased? I remember asking Doctor 1 that question and he said they weren't sure in her case. Is that something they confirm when you exhibit granulomas, etc.? Her results only say "diffuse chronic active colitis" with crypt abscesses mentioned in the cecum only. I thought I read Crohn's MAY include the full thickness...please correct me if I am wrong on that.

 

[my little penguin]

Crohns is full thickness
It’s not something that’s confirmed individual
That is just how Crohns works
Ulcerative colitis is not
Ds had granulomas found so no confusion for the most part

 

[Maya142]

My daughter also had granulomas, plus disease in her terminal ileum which made it easy to differentiate. Her Crohn's was all through her colon - every biopsy showed inflammation and she had ulcers in her rectum and colon.

Did she have an MRE? For example, my daughter's MRE showed mild thickening for the terminal ileum. That is a feature of Crohn's, not UC.

I think this is something to discuss with your GI. And if you are still uncomfortable, then definitely get a third opinion.

My daughter has mild Crohn's, but she has severe, complicated arthritis that no matter what we do, does not go into remission. We have seen countless rheumatologists for second, third and 10th opinions and each time we have learned something new.

It's ok to keep looking for answers if you feel like something is off - always trust your gut.

 

[Carolina*]

My daughter also had granulomas, plus disease in her terminal ileum which made it easy to differentiate. Her Crohn's was all through her colon - every biopsy showed inflammation and she had ulcers in her rectum and colon.

Did she have an MRE? For example, my daughter's MRE showed mild thickening for the terminal ileum. That is a feature of Crohn's, not UC.

I think this is something to discuss with your GI. And if you are still uncomfortable, then definitely get a third opinion.

My daughter has mild Crohn's, but she has severe, complicated arthritis that no matter what we do, does not go into remission. We have seen countless rheumatologists for second, third and 10th opinions and each time we have learned something new.

It's ok to keep looking for answers if you feel like something is off - always trust your gut.

She did have an MRE and her small bowel is not impacted in any way, nothing was found. Her TI biopsy said "mild acute terminal ileitis, no fissure, fistulas, granulomas or dysplasia identified" on her colonoscopy and then a clean MRE.

 

[my little penguin]

If she has mild acute terminal ileitus then her terminal ileum (small bowel is affected )
Terminal ileum is the most common location of inflammation for Crohns
Which your Dd has inflammation there

 

[Carolina*]

If she has mild acute terminal ileitus then her terminal ileum (small bowel is affected )
Terminal ileum is the most common location of inflammation for Crohns
Which your Dd has inflammation there

Yes, sorry, I should have clarified more. They said it was "backwash ileitis" given that there was nothing found on her MRE. The Doctor said before the MRE that she would be surprised if anything was found. Is anything concerning in this given the new info I just shared?

 

[Carolina*]

These were her MRE results:

FINDINGS:

IMPRESSION:
No evidence of inflammatory bowel disease. Large amount of stool throughout the colon.

GI: Bowel is normal in caliber, wall thickness and fold thickness. Normal peristalsis is noted within the visualized bowel loops. Following contrast administration there is appropriate enhancement without any foci or increased or decreased vascularity. There is no stricture or fistula identified. A large amount of stool is noted throughout the colon. No free fluid or drainable fluid collections identified.

Hepatobiliary: No focal hepatic lesion or intrahepatic biliary dilatation. Pancreas normal morphology and duct caliber. There is no cholelithiasis, gallbladder wall thickening or mucosal hyperemia. There is no biliary ductal dilatation. Normal splenic parenchyma.

GU: Normal cortical medullary differentiation. Bilateral symmetrical renal parenchymal enhancement without solid mass or hydronephrosis. Normal adrenal morphology.

Retroperitoneum: Normal aortic caliber. No retroperitoneal adenopathy.

Musculoskeletal: No osseous lesion.

 

[my little penguin]

Did she clean out prior to her MRE ?
When Ds had a clean out (scope plus MRE back to back )
His MRE results were more accurate -showed thickening etc...
Than when he had a normal no food after midnight MRE

 

[Carolina*]

Did she clean out prior to her MRE ?
When Ds had a clean out (scope plus MRE back to back )
His MRE results were more accurate -showed thickening etc...
Than when he had a normal no food after midnight MRE

No, we weren't told to clean out before the MRE thus all the stool mentioned. Does that make you concerned the results aren't accurate? Why wouldn't they tell us to clean out, ugh! This is so frustrating.

 

[Optimistic]

HI. I’m just chiming to say I’m sorry you are going through this. The “unusual” cases are frustrating and it is so hard to have no definite or a floating diagnosis. We went through a year and a half of symptoms and wonky labs that were attributed to all sorts of things other than IBD. It took him landing in ICU in full angry flare and loss of 20 pounds to get agreement of Crohn’s. I wish I knew how to fast track this for you!

 

[Maya142]

Generally when the terminal ileum is involved, it's Crohn's.

Here is what I find somewhat confusing - they are saying it's patchy like Crohn's BUT it's UC. And again with the inflammation in the terminal ileum (which is typical for Crohn's but rare for UC).

So in my eyes, there are two things that are not typical for UC but are typical for Crohn's.

I think there are two things you can do. Given that she is doing well, you can just wait and watch and believe the doctor when she says it's indeterminate colitis. But then I would make sure she is monitored very carefully both with MRE and scopes.

The other thing you can do is get another opinion. That is what I'd do in your shoes, I think. It seems weird to me that she has two features that are really common for Crohn's and not common in UC and they are still calling it Indeterminate colitis. That doesn't seem right. But I'm a mom and not a doctor.

I would also get a second opinion if you think she is not gaining and growing enough. The window for growth especially is small and if she is not growing enough, then I would DEFINITELY get a second opinion. And it seems like she should have gained more weight too...even if she is thin.

Have they looked at her bone age to see if she is delayed?

 

[Maya142]

The other thing to do is ask for a referral to endocrinology if she's not gaining/growing. They will monitor her and make sure she is not behind.

Generally, if a kiddo is in remission, they should be gaining weight and growing normally, as long as they are getting enough calories. You say she is drinking two Boost shakes - is she also eating well? Do you think she's getting enough calories.

If she is getting enough and still hasn't gained or grown much, then I would be concerned that she is not really in remission.

 

[Carolina*]

Generally when the terminal ileum is involved, it's Crohn's.

Here is what I find somewhat confusing - they are saying it's patchy like Crohn's BUT it's UC. And again with the inflammation in the terminal ileum (which is typical for Crohn's but rare for UC).

So in my eyes, there are two things that are not typical for UC but are typical for Crohn's.

I think there are two things you can do. Given that she is doing well, you can just wait and watch and believe the doctor when she says it's indeterminate colitis. But then I would make sure she is monitored very carefully both with MRE and scopes.

The other thing you can do is get another opinion. That is what I'd do in your shoes, I think. It seems weird to me that she has two features that are really common for Crohn's and not common in UC and they are still calling it Indeterminate colitis. That doesn't seem right. But I'm a mom and not a doctor.

I would also get a second opinion if you think she is not gaining and growing enough. The window for growth especially is small and if she is not growing enough, then I would DEFINITELY get a second opinion. And it seems like she should have gained more weight too...even if she is thin.

Have they looked at her bone age to see if she is delayed?

Thanks, you summarized the insanity well. She grew an inch between October and December appointments and gained 4lbs so I think in their eyes she is fine. She does eat well and I am pushing the calories wherever I can. I have not done her bone age, I think because she is tall and consistent in height they haven't fixated on that. I absolutely understand the need for weight gain for puberty to begin eventually.

Gosh, I'd like to think a major medical would never under treat when it seems like the top-down approach is widely accepted these days. With everything I mentioned, keep in mind we are only 3 months in so not sure how much that changes any concerns.

 

[my little penguin]

MRE are normally done without a clean out
Just for ds who is constipated as part of Crohns
We have had better luck when he was cleaned out
But that was prep from a scope the day before

So not technically for the MRE

Definitely see Endo given her age
Girls have a tiny window for growth

GI and rheumo never told us to have Ds see Endo
Finally allergist stepped in and said Ds should go
See Endo

One visit and Endo agreed that allergy was right
Ds should be monitored closely by them as well

 

[Maya142]

Yes, girls really do have a tiny window for growth and she is already 11...I would get her seen by endocrinology to be sure.

 

[Carolina*]

Thanks all again! Her return appointment 4 months out is scheduled for April. I am thinking I will make this sooner. I get the sense they want me to not fixate on the Indeterminate and I was okay with that since she seems to be doing well, but I want to satisfy my concerns we are not under-treating IF it is indeed Crohns. Am I missing anything?

1. How are we treating the full thickness on Lialda if the diagnosis turns out to be Crohns?
2. When will we scope again?
3. Referral to Endo
4. Is the 4lbs/1" growth in 2 months time enough?

Is there a Facebook group for the parents here? Sometimes its nice to put a face to the names.

 

[Maya142]

I want to satisfy my concerns we are not under-treating IF it is indeed Crohns

^That is exactly what I would emphasize. Because Crohn's rarely responds to just mesalamine...in fact, many GIs say it's like giving aspirin for a brain tumor. It won't hurt but it's not really going to help.

Unfortunately, in GI land, there is a lot of "let's wait and see," so that may be what they tell you. My worry then would be that you want to avoid complications associated with Crohn's while you are waiting and seeing - such as fistulae, abscesses, thickening, delayed growth/puberty etc.

I think delayed growth/puberty is the biggest concern and most likely given her age.

 

[Carolina*]

^That is exactly what I would emphasize. Because Crohn's rarely responds to just mesalamine...in fact, many GIs say it's like giving aspirin for a brain tumor. It won't hurt but it's not really going to help.

Unfortunately, in GI land, there is a lot of "let's wait and see," so that may be what they tell you. My worry then would be that you want to avoid complications associated with Crohn's while you are waiting and seeing - such as fistulae, abscesses, thickening, delayed growth/puberty etc.

I think delayed growth/puberty is the biggest concern and most likely given her age.

Just so I am prepared with what to come back with. Devils advocate...she is responding well to Lialda, her FCP shows its working, she's grown an inch and gained 4lbs in a month.

 

[my little penguin]

Devils advocate
How is she responding well ?
Stomach pain
Pale
Mummy gut telling you something is off
Etc...,
Make that list
Not the clinical symptoms /signs the doc already knows
How many calories is she actually taking in each day
Track it on my fitness pal for a week
Including shakes
Vs how much she is gaining
Be prepared to bring it to endonand GI
They need to know


When Ds got better he gained 30 lbs in 3 months
So while 4 lbs is a start it’s not proportional to what she should weigh
Based on her growth and weight prior to getting sick
What % for weight was she at age 2.
That is where she should be very close to now

My kiddo is close 60-75% for both
And he still sees Endo even though he is growing /gaining

 

[Carolina*]

Devils advocate
How is she responding well ?
Stomach pain
Pale
Mummy gut telling you something is off
Etc...,
Make that list
Not the clinical symptoms /signs the doc already knows
How many calories is she actually taking in each day
Track it on my fitness pal for a week
Including shakes
Vs how much she is gaining
Be prepared to bring it to endonand GI
They need to know


When Ds got better he gained 30 lbs in 3 months
So while 4 lbs is a start it’s not proportional to what she should weigh
Based on her growth and weight prior to getting sick
What % for weight was she at age 2.
That is where she should be very close to now

My kiddo is close 60-75% for both
And he still sees Endo even though he is growing /gaining

Thank you! Sometimes I have a hard time gathering thoughts under pressure so I like to think through it all beforehand and make my list of questions to refer too.

Her height has been steady at 75%, weight has dropped from 25% to 19% from her younger years. BMI is very low though.

 

[crohnsinct]

Few things:

From what I have read, the decision to go top down or bottom up really has to do with the state of the patient and severity of disease. So a mild patient will typically go bottom up. It is what is responsible in most cases. However, with close monitoring and with the understanding that you will switch gears if there is a need. This is what we did with my mild daughter who wasn't gaining weight or growing. Did that for a year and eventually decided that although she was "mild" she needed to be put on Remicade to really get her to a solid remission. All the while she was being monitored, appointments and conversations with the GI etc. You may not need an appointment to ask your questions. Does your GI allow for calls or emails. I pretty much emailed weekly the first 6 months. You are going to have a lot of questions and they understand that. You can't be expected to ask all your questions the first few appointments. You don't know what you don't know.

Also wanted to say that I know of two kids, one in the practice my daughter went to and the other in our church who also had Crohn's Colitis. The were both treated with Pentasa. One lasted a year on it and then fcp started to raise. He moved to methotrexate and then eventually Remicade. His mother doesn't regret it. He gained, grew and had normal scopes in that time, it just stopped working for him. The other is still on it 6 years later. Now she could actually have UC so who knows. Both of these kids had clear TI's. I have heard the term backwash ileitis but am not really up on I t. Now you are sending me googling.

You are right, Celiac Disease could raise FCP so very encouraging that her number came down. Good job there!

At dx my older daughter with VERY dramatic disease only had it in her colon and rectum...well also stomach but for some reason they still said it could be UC...BUT her TI was pristine. At scope GI was hesitant to say Crohn's but then biopsy results came in with granulomas. 6 years later she has disease in her TI.

FWIW - some of the docs I follow mention something about UC being able to have some ulcers appear somewhere in the small bowel. Again, I am not well versed on this because I didn't read further because my daughters have Crohn's. All this to say that I agree with your docs that the actual dx doesn't matter that much except for when surgery is discussed. As long as they are monitoring the small bowel and not getting stuck with certain meds.

Duke is an excellent center. I follow a couple of the docs there and their research but I would still get another opinion just to set your mind at ease.

 

[my little penguin]

Crossing percentiles or flatlining per Ds GI
Is not acceptable
Make them show you her entire growth /weight chart
If she is at 1-5% fir weight vs 25 %
That still a big red flag things are not we’re they need to be
Hence the my fitness pal food diary
It tracks calories plus the type of calories for free
Tells the doc whether she is absorbing nutrients
Based on calories
Made a big difference fir our GI to “see” what Ds was eating
Vs not gaining

 

[crohnsinct]

Oh yeah and I had one outhouse tall girls and healthy weight. This was one reason they didn't think she had Crohn's...until she stopped. She started menstruating and we were told she wouldn't grow more but after Remicade she grew almost 5".

I would be encouraged with 1" in three months and so early in dx but still keeping a watchful eye on things and definitely looking at velocity over inches as MLP suggests.

I think sometimes docs get early positive results and could rest a bit and take their eyes off the prize or at least this is what happened in both my daughters' cases. They are busy, sometimes with hundreds of patients, some with very dramatic disease and a lot of care needed. This is where you can help them

 

[Maya142]

Her height has been steady at 75%, weight has dropped from 25% to 19% from her younger years. BMI is very low though.

Our GI also says crossing percentiles (dropping) is not good. My daughter lost weight very slowly after her Crohn's dx. She had stopped growing so we didn't expect a lot of weight gain, but we did expect her weight to at least stay constant. Instead she lost slowly. I kept bringing it up to her GI who would brush it off since it was like 1-2 lbs a month.

Well, 2 years later, she had lost 15 lbs. Then on top of Crohn's, she was diagnosed with Gastroparesis and lost another 12 lbs or so. This was a thin kid to begin with and at the point we ended hospitalized many times with them telling us if she lost a lot more, her organs could start failing.

She actually did develop Refeeding Syndrome and electrolyte issues and an arrhythmia from being severely malnourished and underweight.

Hers is a dramatic story but I just wanted to point out that if you have a very thin kid, you have no cushion. One bad flare or one bout of CDiff could mean 5-10 lbs lost and then you're suddenly in the danger zone.

And since she is growing, she should really be gaining more weight, I would think. I remember when my girls were growing and gaining rapidly around that age, they would easily gain 15-20 lbs in a year.

It is very early, these are just things to keep an eye on.

Have you considered trying more broken down shakes, like Peptamen Jr? They are usually recommended for Crohn's patients, because they are easier to absorb. I know she is drinking Boost, but perhaps she is not absorbing it.

My daughter did not gain weight till she was put on a feeding tube AND more broken down formula - in her case we had to go to elemental formula (the most broken down) before she gained weight. Elemental is hard to drink because it tastes nasty (my daughter could not drink it) but semi-elemental is drinkable (though it also definitely tastes worse than Boost/Ensure).

Pediasure Peptide and Peptamen Jr are the two semi-elemental formulas used often.

 

[Carolina*]

Few things:

From what I have read, the decision to go top down or bottom up really has to do with the state of the patient and severity of disease. So a mild patient will typically go bottom up. It is what is responsible in most cases. However, with close monitoring and with the understanding that you will switch gears if there is a need. This is what we did with my mild daughter who wasn't gaining weight or growing. Did that for a year and eventually decided that although she was "mild" she needed to be put on Remicade to really get her to a solid remission. All the while she was being monitored, appointments and conversations with the GI etc. You may not need an appointment to ask your questions. Does your GI allow for calls or emails. I pretty much emailed weekly the first 6 months. You are going to have a lot of questions and they understand that. You can't be expected to ask all your questions the first few appointments. You don't know what you don't know.

Also wanted to say that I know of two kids, one in the practice my daughter went to and the other in our church who also had Crohn's Colitis. The were both treated with Pentasa. One lasted a year on it and then fcp started to raise. He moved to methotrexate and then eventually Remicade. His mother doesn't regret it. He gained, grew and had normal scopes in that time, it just stopped working for him. The other is still on it 6 years later. Now she could actually have UC so who knows. Both of these kids had clear TI's. I have heard the term backwash ileitis but am not really up on I t. Now you are sending me googling.

You are right, Celiac Disease could raise FCP so very encouraging that her number came down. Good job there!

At dx my older daughter with VERY dramatic disease only had it in her colon and rectum...well also stomach but for some reason they still said it could be UC...BUT her TI was pristine. At scope GI was hesitant to say Crohn's but then biopsy results came in with granulomas. 6 years later she has disease in her TI.

FWIW - some of the docs I follow mention something about UC being able to have some ulcers appear somewhere in the small bowel. Again, I am not well versed on this because I didn't read further because my daughters have Crohn's. All this to say that I agree with your docs that the actual dx doesn't matter that much except for when surgery is discussed. As long as they are monitoring the small bowel and not getting stuck with certain meds.

Duke is an excellent center. I follow a couple of the docs there and their research but I would still get another opinion just to set your mind at ease.

THANK YOU Crohnsinct my little penguin maya142!! I don't know if I am tagging correctly but I truly appreciate the help. I hear and understand everything you are saying, I am keeping a close eye on things and it is so good to know what to look out for and allows me to ask better questions.

Crohnsinct, who do you follow at Duke? I am curious if it is her Doctor, she seems to be well known in the field. I really like her so I hope things continue to go well with her. She is a Pediatric GI but also sees adults. She feels strongly that is hard for patients to make the jump after such a close relationship with their Doctor after being diagnosed young. She is always talking about her thought process as to my daughter now, my daughter entering puberty, college age, child-bearing age, adult and meeting her needs for all those different stages. She mentions this in regards to how we introduce and choose medications, I think talking about the antibodies and such that I don't fully understand yet but read about on here.

I was also curious if that was an appropriate thing to email the Doctor about, I may just do that!

 

[my little penguin]

How does your child sera pediatric GI who sees adults ?
Highly recommend a large pediatric only hospital woth a pediatric GI
Not an adult GI who kinda sees kids
Adult GI are not as agressive as pediatric GI
Since adult disease tends to be less severe in general
Simple due to time with disease
Adult GI don’t worry about growth or weight gain
Pediatric GI that is high on the list
That explains a lot
Tagging Maya142
In the whole adult GI
Wow

 

[Carolina*]

How does your child sera pediatric GI who sees adults ?
Highly recommend a large pediatric only hospital woth a pediatric GI
Not an adult GI who kinda sees kids
Adult GI are not as agressive as pediatric GI
Since adult disease tends to be less severe in general
Simple due to time with disease
Adult GI don’t worry about growth or weight gain
Pediatric GI that is high on the list
That explains a lot
Tagging Maya142
In the whole adult GI
Wow

She is listed as a Pediatric Gastro on the GI website, we see her at Duke Children's. I just know she also sees some adult patients. Open to any info on why this is bad as people read. Instant hearburn reading this comment, oy, another thing to worry about. I truly do appreciate it though. Knowledge is power!

 

[Maya142]

Is she at a pediatric hospital/practice? I would also recommend a children's hospital. We saw a pediatric rheumatologist in an adult hospital for years and it was fine, but they just don't have the same resources (therapists for children, kiddie MRI machines) that children's hospitals have.

And the lab/MRI techs were not used to dealing with kids and that just made things much more difficult.

Is she a pediatric GI or an adult GI? We have found the adult rheumatology world very different from the pediatric rheumatology world. I have heard it is the same for GI, so we have chosen to keep our 21 year old with her ped. GI as long as her pediatric GI will see her.

With adult rheumatologists, we have found everything moves more slowly and they treat less aggressively. There isn't that same urgency that there is with children - to get the disease under control ASAP and prevent any and all damage to the joints. It has been very frustrating.

I'm not saying there aren't good adult doctors - there definitely are. But you have to look carefully to find one - we had to see 3 before we found a good adult rheumatologist for my older daughter.

Kids aren't mini-adults and pediatric IBD is really different from adult IBD. It tends to be more severe and it tends to spread over time. For example, an adult diagnosed with Crohn's in the colon, would generally have Crohn's in the colon and nowhere else for his whole life. But a kiddo diagnosed with Crohn's in the colon, may be found to have Crohn's in the ileum too a couple years later and then Crohn's in the stomach.

These are totally random examples, but I just mean that it can spread in kids and you don't see that in adults usually.

Also, growth and weight gain and the use of EEN tends to be a pediatric issue. And feeding tubes are used a LOT in kids and almost never in adults.

 

[Maya142]

Oh, if she is at Duke Children's and is a pediatric GI, I wouldn't worry.

It's just if she was an adult GI and not certified in pediatric gastroenterology I would be worried.

 

[Carolina*]

Is she at a pediatric hospital/practice? I would also recommend a children's hospital. We saw a pediatric rheumatologist in an adult hospital for years and it was fine, but they just don't have the same resources (therapists for children, kiddie MRI machines) that children's hospitals have.

And the lab/MRI techs were not used to dealing with kids and that just made things much more difficult.

Is she a pediatric GI or an adult GI? We have found the adult rheumatology world very different from the pediatric rheumatology world. I have heard it is the same for GI, so we have chosen to keep our 21 year old with her ped. GI as long as her pediatric GI will see her.

With adult rheumatologists, we have found everything moves more slowly and they treat less aggressively. There isn't that same urgency that there is with children - to get the disease under control ASAP and prevent any and all damage to the joints. It has been very frustrating.

I'm not saying there aren't good adult doctors - there definitely are. But you have to look carefully to find one - we had to see 3 before we found a good adult rheumatologist for my older daughter.

Kids aren't mini-adults and pediatric IBD is really different from adult IBD. It tends to be more severe and it tends to spread over time. For example, an adult diagnosed with Crohn's in the colon, would generally have Crohn's in the colon and nowhere else for his whole life. But a kiddo diagnosed with Crohn's in the colon, may be found to have Crohn's in the ileum too a couple years later and then Crohn's in the stomach.

These are totally random examples, but I just mean that it can spread in kids and you don't see that in adults usually.

Also, growth and weight gain and the use of EEN tends to be a pediatric issue. And feeding tubes are used a LOT in kids and almost never in adults.

Yes, she is at Duke Children's Hospital. She is listed as a Pediatric GI but I know she see's adult patient at another Duke location also. Her first Doctor was ONLY a Pediatric GI and their treatment plans did not vary for whatever that is worth. The only thing they differed on is whether the Celiac results were accurate.

 

[Maya142]

Yeah, I wouldn't worry if she also sees adults. That doesn't really matter - actually in a way, it's convenient because if your daughter stays local after college, she could still see the same GI.

The important thing is that she is a board certified pediatric GI and being in a children's hospital helps - they have Child Life, activities for kids when you're inpatient, more understanding nurses/techs etc.

 

[Carolina*]

Yeah, I wouldn't worry if she also sees adults. That doesn't really matter - actually in a way, it's convenient because if your daughter stays local after college, she could still see the same GI.

The important this is that she is a board certified pediatric GI and being in a children's hospital helps - they have Child Life, activities for kids when you're inpatient, more understanding nurses/techs etc.

You hit the nail on the head. My dream is that my 2 smarties get into Duke or UNC and stay local so they never leave me and she never has to leave the Doctors she knows.

 

[crohnsinct]

The doc I follow is male but I wonder if she is part of the et al in his research. I will see if I can find some os his papers.

Hmm. She sounds great BUT with kids, especially one as young as yours, it is really best to have a pediatric GI. Pediatric IBD behaves differently than adults and the issues are a tad more complicated, although it sounds like she has a relatively good handle on them. Most sed GI's will see the kids through college so hopefully by then the transfer to adult care wouldn't be so difficult. At least not if everyone is doing a good job teaching them to handle their own care but don't go by me, I just emailed the GI 3 times for O! :ybatty: I just think that dedicated sed GI practices have seen more in the way of kids with disease so have more experience. Does she go to bed conferences and such? Is there a ped hospital with an IBD center close by? Also if they are a member of the Improve Care Now network even better.

As for emailing her, I wouldn't hesitate to say something like, "as I get accustomed to the disease and learn more, a question comes to mind and I was wondering if you could give me your thoughts". If she really feels like the discussion requires an office visit she will let you know. So far all three of my daughters' GI's have answered questions via email. Two of them have actually preferred it.

 

[my little penguin]

No issues if she is a pediatric GI at a pediatric hospital all good

We have an adult dermo who can see children and is not at a pediatric hospital so that was what I thought you meant
Not an issue for dermo but definitely for GI

All good
Sorry for the unnecessary worry

 

[Carolina*]

No issues if she is a pediatric GI at a pediatric hospital all good

We have an adult dermo who can see children and is not at a pediatric hospital so that was what I thought you meant
Not an issue for dermo but definitely for GI

All good
Sorry for the unnecessary worry

Please don't be, I appreciate it and again an opportunity to learn. It is a very valid concern and I am going to dig even more when I ask questions knowing she also sees adults. I'd rather someone ask then keep quiet and miss something important any day!

My brain is fried tonight but I am going to send an email tomorrow. I will let you all know what she says about my under treating concerns.

 

[wild_one353]

I used lialda for crohn's and it helps noticably as long as disease is somewhat in the colon. My advice is that the new generic Zydus is garbage though, so if you ever are forced to switch, paying for name brand is probably worth it.

I eventually was able to get of meds entirely by using an herbal blend of 1/4 tsp of turmeric 1/8th tsp pepper and one tablespoon of ginger boiled and filtered through paper towel, it's about the same strength or better then my dosage of lialda so now I'm not on any drugs. I also do alot of other things buts that's how i only took 1 lialda pill for crohns, now i take none at all!!

 

[crohnsinct]

Just wanted you to know I sent my post before I saw all the others. Sounds like she is a board certified pediatric GI with the focus of her practice being meds. Maybe by "I see adults" she actually means the kids who have grown up in her practice. Plus she is at Duke Children's. I think you are fine as far as the ped vs adult concerns.

 

[Carolina*]

Understood on the Ped versus Adult, that's my fault for mentioning and not clarifying well. i am glad it was talked about though because it will factor in to how I ask things down the road and push back if ever needed.

We are 3 months in on diagnosis/meds but curious about this...

As for the weight, she is 4'10" and 70lbs as of today. I wish she had gained more since meds, but I wasn't overly concerned with the 1"/4lbs gain in a 6 weeks because I thought that was steady and I had told myself it was a good sign she was able to grow in height? The 3lbs was in the first week though and I it has only been 1lb since. I am having a hard time picturing a big 20+ weight gain like people mention. Her healthy brother (knock on wood) is 1 year older, 2" or 3" at most taller and weighs 82lbs as of this morning when I made him weigh himself. I am 100% concerned about her getting a better cushion on her weight should she have a flare or stomach bug. I agree she is too thin and that would be a disaster. I also know she needs to weigh more to start puberty. I was skinny and got my period at 16.5 so I know she was going to be later side even without the Crohn's.

 

[my little penguin]

Ok so the body works like this in kids (most not all )
When they aren’t getting enough calories or absorbing enough calories
First weight is stagnant or slowly drops off crossing percentiles (chart has a flatline )
But growth doesn’t stop
Then growth slows
Then the brain stops developing
Then organs shut down

Comparing siblings doesn’t work
That is why a growth. Andvweight curve is done
She needs to be healthy on her weight curve
Which per you is 20-25%
She is at 1-5%
That’s a big difference

My kid dropped from 75% to 25% for weight
He was 50 lbs for a few years then started losing
A year after dx he gained 30 lbs at age 8
Which put him back on his curve
And has gained another 50 lbs since and grown over a foot
Set to frown another 6-7 inches and gain another 30 lbs per his chart in the next year or two (puberty)

 

[my little penguin]

The meds might be working but she may not be consuming enough
Kids woth crohns need a ridiculous amount for calories compared to other kids
Tracking with my fitness pal can shed light on
If it’s number of calories
Type of calories (formula vs semi elemental formula)
If she needs more formula

My kiddo is 50% formula 50% food
It took a while to figure that out

 

[Carolina*]

Good advice. I am going to start tracking calories, I should have been doing that all along. She eats a lot and does the shakes which are 720 calories themselves, but I should be tracking. I was so overwhelmed with learning all the ropes going gluten-free, but now that that is second nature I need to track. I would be curious to figure out what weight would put her back at that 25% in weight, I guess I could just keep plugging in numbers to those calculators to get an idea.

 

[crohnsinct]

I would not be at freak out mode just yet over her weight. cautious yes but there are a few things going on here. She is only just recently dx'd and put on meds. It takes a while for the gut to heal and start to really absorb nutrients. It took O at least 6 months to get any momentum going and a full year before she took off. So definitely watch it but it does take some time.

Second, she was dx'd with celiac which for most people means that they turn over a very healthy eating pattern simply because they have to avoid gluten. So no processed snacks, no wheat carbs etc. Definitely track those calories as I would assume she may not be getting enough. O needed 3000 calories to gain and she was dx'd at 12.

Third, did you say she is a dancer? IDK how avid a dancer she is but I was a professional dancer and trained from a very young age. At 11, most studios are really kicking it up a notch. More than one class a week for most students. Dance burns a crazy amount of calories and has the extra after burn so they burn for hours after. Most people don't consider it a sport but trust me they burn way more calories than say my daughter who plays softball. So when tracking calories don't forget her activity as well. Does anyone in your family have a Fitbit type device? It isn't scientifically 100% accurate but I would ask her to wear one on a typical dance day to get a sense of how many calories she is burning.

There are some discussion son here (maybe in the diet section) of healthy foods for gaining weight.

 

[my little penguin]

Good point easy gluten free brands
Canyon house bakery
Kinnicknick
Udi
Enjoy life Foods
Against the grain gourmet
Daiya

Plus some that are higher fiber which can cause issues for Crohns
When based on almond or cassava /bean flours

 

[Carolina*]

I would not be at freak out mode just yet over her weight. cautious yes but there are a few things going on here. She is only just recently dx'd and put on meds. It takes a while for the gut to heal and start to really absorb nutrients. It took O at least 6 months to get any momentum going and a full year before she took off. So definitely watch it but it does take some time.

Second, she was dx'd with celiac which for most people means that they turn over a very healthy eating pattern simply because they have to avoid gluten. So no processed snacks, no wheat carbs etc. Definitely track those calories as I would assume she may not be getting enough. O needed 3000 calories to gain and she was dx'd at 12.

Third, did you say she is a dancer? IDK how avid a dancer she is but I was a professional dancer and trained from a very young age. At 11, most studios are really kicking it up a notch. More than one class a week for most students. Dance burns a crazy amount of calories and has the extra after burn so they burn for hours after. Most people don't consider it a sport but trust me they burn way more calories than say my daughter who plays softball. So when tracking calories don't forget her activity as well. Does anyone in your family have a Fitbit type device? It isn't scientifically 100% accurate but I would ask her to wear one on a typical dance day to get a sense of how many calories she is burning.

There are some discussion son here (maybe in the diet section) of healthy foods for gaining weight.

Good point that the Celiac is also significantly messing with her ability to absorb nutrients with the villi damage. I think they said 6 months to have some of that damage reversed. Reinforces how important it is with both the Celiac and Crohns working against her.

That's so cool on the professional dancer! I also studied seriously from a young age and studied at a very intense ballet company so I know exactly what you mean. She is at a much more laid-back studio and dances 3 days a week for an hour with additional Saturday during Nutcracker season. Point taken that we need to track the calories burned too.

 

[my little penguin]

Parent of kids with food allergies
Has a recipe database with thousands of recipes and brands
Just click gluten free
Lots of expert moms
Who can help
Fatten a kiddo up with kid friendly high calorie meals

https://community.kidswithfoodallergies.org

 

[Maya142]

I would definitely agree that you need to figure out how much she is eating and how much many calories she is burning. We use myfitnesspal. When my daughter was really underweight, we were referred to a nutritionist who helped us figure out how many calories my daughter needed. Depending on how much many calories she is burning, it could be anywhere from 2000-3000.

The semi-elemental shakes may help considering the villi damage - I forgot about the Celiac. That may be interfering with absorption. But to be completely honest, they don't taste great, so if she refuses to drink them, then I'd just stick with the Boost/Ensure. Your GI could probably give you samples - we were given samples of both Peptamen Jr and Pediasure Peptide to try, in several different flavors.

My daughter did not like them at all at first, but managed to get used to Peptamen Jr. But she still could not drink enough to maintain her weight, much less gain, so we moved to a feeding tube.

But anyway, as a first step, I'd just figure out how much she is eating and burning. My daughter was pretty sedentary because she had gotten so malnourished and weak but even then, she needed 2400 calories to gain weight (and she was completely done growing and 18 years old at that point). Your daughter probably needs even more than that.

 

[Jmrogers4]

Sorry I didn't get through all the thread but thought I would chime in anyway. So my son at your daughters age was same height/weight. He was diagnosed at 10 and while had initially lost weight he had put on enough to get him back up to 70+ pounds and he had grown in inch in the last year, then he virtually stopped. He grew but velocity dropped off the charts so that by the time he was 14 1/2 when we started remicade he was 5'1" and 89 pounds so over a 3 1/2 year period he grew 2" so while each appointment should growth it was fractions of an inch and same with weight. Well each year he dropped farther down the scale (75th at 10) so that by the time we started remicade he was at 12% - growth velocity had dropped off the chart, BMI was 1%. Puberty was super early stages (I think he started and then stopped). He continued to play baseball, football, snowboard and was always active, didn't miss school.
What a difference a med that truly brought remission for him made. His velocity went off the chart. He quit drinking the Pediasure didn't make a difference anymore. He is still skinny but just genetically now, color is good.
For a few the 5-ASAs are enough for others an immunomodulator, and some need a biologic. Took a while to get where I don't think about it every day, it is and will always be a concern that comes up like now with all the flu going around, signing up for classes (is he taking on too much, will the stress be too much) but I know he's in a good spot and even if he does get the flu (he had a flu shot) it probably won't send him into a flare but then we've had 4 years of remission.

 

[Carolina*]

Can I ask another question please, how does everyone handle food intolerances? I stated earlier she is allergic to what feels like everything environmental year-round so she has bad allergy shiners which I think makes her look extra pale too. She did a couple years of sublingual allergy drops (same as shot but taken orally and swallowed), not sure it really helped but always makes me wonder if there was any sort of connection.

Anyway, question is about an intolerance that she has for potatoes (NOT allergy). Prior to the testing a few years ago she ate plenty of potatoes and I never saw an adverse reaction. Given she has gone gluten-free and really eats no bread or the like anymore (doesn't like GF version), it would be really nice to be able to add potatoes to her diet. She loves them and it would be nice to give something after so much has been taken away. I asked the nutritionist about it and she said the only way to know for sure is to give them in large quantity over a period of time. I guess my general question is, is that foolish of me to even consider reintroducing and testing a food intolerance down the road given the IBD?

 

[Maya142]

What happens when she has potatoes? Does it cause belly pain or something?

My kiddo is lactose intolerant and takes Lactaid. But we think she is also has some intolerance to whey protein too because she cannot tolerate Lactaid milk or yogurt in large quantities.

We have kept dairy in her diet and over time, she has become able to tolerate more. When she was first diagnosed, I couldn't use butter at all in cooking or she would get very nauseous. Now I can use and we can use some butter in baked goods too.

But she did keep up with eating dairy the whole time - we got Lactaid milk, she ate and still eats low fat cheese. She cannot drink a whole glass of milk but she can have some in tea or coffee.

But it is documented that lactase production can become better when IBD is under control. I know when she is flaring, she tends to eat less dairy naturally. She just doesn't want it.

I guess this is a long way of saying all we did is keep dairy in her diet. Mostly because she was too stubborn to give it up, despite it causing nausea and belly pain and even occasionally diarrhea.

She did give up certain things - she rarely eats ice cream and she avoids things with a lot of cheese or butter.

But we did keep it in her diet and she seems to tolerate it more now. I have absolutely NO idea if that is scientifically proven - if keeping it in the diet helps. It's just what we did because my kid is unusually stubborn and loves baked goods/chocolate!

I am going to tag my little penguin because she has lots of experience with allergies and food intolerances.

 

[crohnsinct]

Food shouldn't bother her IBD. However, care should be taken if she is in a flare or not yet in remission. It is highly individual. What bothers some people during a flare is perfectly fine for others. Typically at dx GI's will recommend a low residue diet. So basically white flours (which of course she can't have) and low fiber. White potatoes fit that bill perfectly. Plus they are good for weight gain.

Other dietary issues for IBDers are overlapping IBS or SIBO etc. So if a patient has one of those then there are other foods to avoid or add etc.

 

[Carolina*]

Thank you both! I really don't think she has any reaction to potatoes. White potato and pork were the only foods that came up during all the allergy testing and they were only intolerances. She ate a ton of potato before we did the blood testing and never complained. I always become paranoid with the GF or a potential intolerance just throwing her off balance therefore effecting the IBD. I would love to add them back and perfect for calories for her with butter, cheese and sour cream options. She has no dairy issues, I never saw her have any obvious effect from the gluten either. Her coloring could have been a sign of the Celiac, but no cramping, nausea or bathroom issues with it prior to the Crohns. Had she not been diagnosed with Crohns I don't know when or if we would have discovered the Celiac.

 

[Maya142]

I think if she has no symptoms when eating potatoes, then she likely is not intolerant to them. I would keep them in her diet - they're easy to digest and actually mashed potatoes or a baked potato work well for my daughter during a flare. And they provide good calories.

A food diary can sometimes help you figure out which foods cause symptoms.

 

[my little penguin]

Most gf bread tastes like cardboard
Vans gf waffles work well as a back up pb and jelly sandwich
Hearty version Canyon bakehouse is one of the better ones
But the one that is awesome (Dh and I would eat them)
Against the grain gourmet is gluten free but made woth milk /cheese
The pizza crusts French baguette and bagels are beyond good
Plus high calories

She may associate potatoes with feeling bad from other gluten containing food
We had that issue with my non ibd lactose intolerant kiddo once we figured out he couldn’t tolerate milk
It took a while

Try different potatoes forms
Mashed potatoes with turkey bacon and cheese
Mix
Dump onto a Belgium waffle maker
Instant crunchy outside yummy inside treat

My kiddo can’t handle beef or pork
Good luck
More later

 

[Carolina*]

Perfect, it really is a game-changer for us being able to eat potatoes. She misses out on all the school birthday treats and never-ending special pizza days so adding something she loves back in will make her very, very happy! We are all nuts about mashed potatoes in this house too and stopped eating them to not torture her. I am so excited too.

I have not found any foods yet that don't agree with her, I am watching closely to monitor though.

 

[my little penguin]

I finally had time to read the whole post on food intolerances
What do you mean they “came up as food intolerances “?

There isn’t a reliable food intolerance test anywhere .
None
You have to use a food diary and document symptoms

Some try to say IgG food testing is accurate
It’s not proven and not accurate AT ALL
since the body is designed to make IgG
It’s suppose to be there

IgE food allergies are the life threatening kind but even then blood and skin tests are only 50% accurate and must be taken into context of clinical history
Reviewed by a board certified allergist with clinical symptoms when eating the actual food.
The gold standard to dx a food allergy is a oral food challenge done in a hospital setting where the child consumes a serving of the food without symptoms


There is patch tests my done by allergists for kids who have EoE
Basically placing food against the back and covering for 48 hours
But that really isn’t very accurate either since EoE is a mixed IgE disorder
They tend to rely more on IgE testing and avoiding top eight allergens
Milk wheat eggs soy fish shellfish tree nuts and peanuts


Been dealing with life threatening food allergies to fish and tree nuts for over 10 years
So ...
Let me know if you have questions

 

[Maya142]

That is also what I thought - there is no blood or skin test that will tell you if she has food intolerances. The exception is lactose intolerance and that is a test done on a biopsy taken during an endoscopy to measure lactase production.

But for other food intolerances, you'd have to figure out based on symptoms after she has eaten.

For example, if my daughter eats beef, she gets stomach pain/cramping and diarrhea. It's certainly not a life threatening allergy - besides the belly pain and diarrhea, she is fine. But it is an intolerance. We only figured it out through trial and error. Now she avoids beef.

Fwiw, we did IgG testing before I knew better. We got a whole bunch of positive results for my younger daughter. We eliminated gluten based on the results and she didn't get any better. So added it back and no change. The other foods that were high were eggs (which she eats with no problems) and fish (again, no issues). We didn't even bother trying to eliminate those.

 

[Carolina*]

I finally had time to read the whole post on food intolerances
What do you mean they “came up as food intolerances “?

There isn’t a reliable food intolerance test anywhere .
None
You have to use a food diary and document symptoms

Some try to say IgG food testing is accurate
It’s not proven and not accurate AT ALL
since the body is designed to make IgG
It’s suppose to be there

IgE food allergies are the life threatening kind but even then blood and skin tests are only 50% accurate and must be taken into context of clinical history
Reviewed by a board certified allergist with clinical symptoms when eating the actual food.
The gold standard to dx a food allergy is a oral food challenge done in a hospital setting where the child consumes a serving of the food without symptoms


There is patch tests my done by allergists for kids who have EoE
Basically placing food against the back and covering for 48 hours
But that really isn’t very accurate either since EoE is a mixed IgE disorder
They tend to rely more on IgE testing and avoiding top eight allergens
Milk wheat eggs soy fish shellfish tree nuts and peanuts


Been dealing with life threatening food allergies to fish and tree nuts for over 10 years
So ...
Let me know if you have questions

She had the skin patch test done and I also heard that were terribly unreliable for food in particular. It was only a handful of foods that were even tested. The results showed the environmental allergies as severe and then the pork/potato was so mild it was listed as an intolerance. She’s had no obvious ill effect from any food ever that I’ve found.

Adding in, she had ear tubes as a baby and they thought they fell out and did not. She had awful complications from that and had major ear surgery on her left ear that has left her with hearing loss in that ear. She also has an incredibly small eustachean tube that doesn’t function well so the allergies were/are a big deal in an attempt to clear out any unnecessary congestion for her Eustachian tube function and hopefully regain some of the lost hearing. It didn’t help unfortunately, but this was why I was so willing to eliminate any allergen that could possibly be effecting her hearing. The Crohn’s and Celiac hit me hard, I foolishly always thought that would be her only battle.

 

[Carolina*]

Hey all, I am finally sending a message. I just want to make sure I am wording this correctly and concisely? I am going to ask about endo and weight gain after, but this is the major point I want to ask about....

I wanted to follow-up with a couple of questions from Lily's 12/19 return appointment. I know you were pleased with the Fecal Calprotectin results lowering from 178 (10/6) to 68 (12/11) on her current treatment plan of Lialda/shake supplement/GF diet. I know I am not supposed to fixate on UC versus Crohn's for now and the current treatment doesn't change, however, is there any concern that we are under-treating if it is Crohn's and the lowered Fecal Calprotectin results are reflecting the outer layer healing only? Also, I thought I had read Celiac patients can have higher "normal" Fecal Calprotectin results. Is this factoring in?

Just got off phone with nurse, ended up calling rather than emailing due to being limited to how much I could type. Explained to me as Indeterminate Colitis, presenting as UC, no granulomas, etc. and the terminal ileum is presenting as backwash ileitis. Happy with FCP drop from 178 to 68 (just outside normal of 50). We are retesting bloodwork, celiac testing and FCP end of March. She said the Doctor would be very quick to move of Lialda if she had any concern that it wasn't working or enough.

She's gained 2-2.5 pounds since I last posted which is great. I am probably starting a new issue, I am obsessed with her weight gain and weighing her...eek. At least she gets excited when it goes up and is proud of it.

 

[Carolina*]

Hi all! I just got a big packet in the mail with all her orders for March appointment which will be 5 months from diagnosis. It is FCP, CBC, CMP, CRP, Ferritin, Folate, iron, sedimentation rate, B12, zinc, vitamin D and Celiac Panel.

I am happy to report she was 65lbs in October at Diagnosis, 68lbs with 1 inch growth in December and now 74.5lbs!!! I was so shocked, she gained the 3lbs very quickly with supplemental shakes but then it slowed to what felt like a stop. All of a sudden in the last 2 weeks she’s gaining quickly again. Praying this is a good sign that her Celiac villi damage is improving and her colitis inflammation is improving. Her FCP was 178 at diagnosis and 68 just outside of normal in December. I am very curious to see where things are at. One annoyance, out first Doctor supposedly coded wrong and our insurance is fighting the FCP tests which has been a pain as it’s the one regularly tested.

 

[crohnsinct]

Great news! Onward and upward!

68 is a very good Fecal cal level. Most labs use 160's as normal but our doc looks at under 100 as being the goal. Even over 100 isn't a freak out moment but means maybe treatment has to be tweaked a little (usually increased dosing).

Fecal calpro is still considered experimental by most insurance companies when it comes to monitoring disease. They approve it for the diagnosis stage in order to screen who should and should not get scopes (don't get me started! This is because it saves them money on scopes!) but they are a very behind on the monitoring science. So this might be what they mean by "coded wrong".

So if your doc is coding it as Crohn's disease large and small bowel (I forget the code off hand) then it very well may be denied. I think if they code it as Diarrhea or something like that it would be covered but IDK how legal that is.

I have been fighting this FCP issue for years! I can wallpaper my bedroom with appeal letters, research, and denial letters. I just recently got the to start covering it for one of my daughters. Not the other one yet.

Good luck! I hope you get it covered.

 

[Carolina*]

Great news! Onward and upward!

68 is a very good Fecal cal level. Most labs use 160's as normal but our doc looks at under 100 as being the goal. Even over 100 isn't a freak out moment but means maybe treatment has to be tweaked a little (usually increased dosing).

Fecal calpro is still considered experimental by most insurance companies when it comes to monitoring disease. They approve it for the diagnosis stage in order to screen who should and should not get scopes (don't get me started! This is because it saves them money on scopes!) but they are a very behind on the monitoring science. So this might be what they mean by "coded wrong".

So if your doc is coding it as Crohn's disease large and small bowel (I forget the code off hand) then it very well may be denied. I think if they code it as Diarrhea or something like that it would be covered but IDK how legal that is.

I have been fighting this FCP issue for years! I can wallpaper my bedroom with appeal letters, research, and denial letters. I just recently got the to start covering it for one of my daughters. Not the other one yet.

Good luck! I hope you get it covered.

Ugh, good to know!!! Her orders all say diagnosis of Indeterminate Colitis and Celiac. I have another letter which I just reread and it looks like they are fighting the December test at the new Doctor too. About to have another next month, it’s adding up quick.

Her FCP lab normal is 0-50, 50-120 borderline, 120 up abnormal.

 

[crohnsinct]

Yep! Our test costs $240. The negotiated insurance rate is about $20! I called the lab and told them insurance denied so how about I pay the insurance rate of $20 and believe it or not they said "NO". They said they could only charge people without insurance that rate. WHAT?! I told them for all intents and purposes, my daughter didn't have insurance for that test. They didn't bite. I just don't get it. Fought with insurance because 8 tests a year would cost them under $200 but without them the only way we could monitor was scopes which would cost them $5000! Seems like a no brainer to me!

I am surprised they didn't cover "indeterminate". Talk with your physician. There may be another code they could ethically use.

 

[Carolina*]

Yep! Our test costs $240. The negotiated insurance rate is about $20! I called the lab and told them insurance denied so how about I pay the insurance rate of $20 and believe it or not they said "NO". They said they could only charge people without insurance that rate. WHAT?! I told them for all intents and purposes, my daughter didn't have insurance for that test. They didn't bite. I just don't get it. Fought with insurance because 8 tests a year would cost them under $200 but without them the only way we could monitor was scopes which would cost them $5000! Seems like a no brainer to me!

I am surprised they didn't cover "indeterminate". Talk with your physician. There may be another code they could ethically use.

Yes, exactly the same, $240 bill. I’m still going to try to fight it.

 

[crohnsinct]

ABSOLUTELY! And if you get no where, ask for a payment plan. I got $20 a month....I am still paying off old FCP tests and I really have no guilt over it. I consider it unconscionable for a lab to charge patients $240 for a test they are willing to accept $20 for from another payor...I don't care who the payor is! They are both guilty. Insurance and labs!

 

[Carolina*]

I had another question before we see the doctor in a couple weeks. Refresher is that she is Indeterminate Colitis/Celiac, patchy but mostly complete inflammation in colon (no granulomas, strictures, fistula) and no small bowel involvement other than some mild inflammation in TI they believe to be “backwash ileitis”. I believe we caught it early. She’s on Lialda and GF diet (I know that is UC drug and like an aspirin for Crohn’s), however at 3 month mark it took FCP from 178 to 68 and we’ll see in a couple weeks if it has lowered more. She has not had any flare symptoms since diagnosis 5 months ago other than looking a little pale possibly still, grown an inch possibly more by now and gained 7-9 pounds depending on the day. Here’s the question, she drinks 2 boost plus shakes a day at 360 calories a pop. I know this is not EEN, is the 2 shakes helping at all in terms of the Colitis or is that level of improvement is all to be attributed to Lialda only? Clearly they are working for weight gain piece. She despises them, I’ve tried them all and any fun smoothie concoction I found. Just curious if maybe 1 shake a day may be an option now that her weight is in a good place or if there is a chance it is having some small impact on the inflammation?

 

[crohnsinct]

This is great news!

There is plenty in the literature about partial EN helping to maintain remission in addition to maintenance meds. Whether or not it is necessary is another story and something you have to figure out on a case by case basis and definitely something you can discuss with the GI. We let our daughter drop EN after she got into good solid remission. She went into a flare a couple years later and I always wonder if we had her keep 1-2 shakes a day if it would have prevented that.

The weight gain can be partially due to the EN but also due to a healing colon which is evident in the calpro results. FWIW, colonic disease is a drama queen and usually produces really high FCP results so under 100 is a really good sign!

If you decide to ease up on the EN but are still concerned about putting on some extra weight, you could try Carnation Instant Breakfast. Those are really yummy and good for weight gain.

Remind me of why she is gluten free? Does she have celiac also? If so, celiac could (doesn't have to and doesn't always) raise calpro s that could also be contributing to the lower results. Either way take it and run with it!

 

[Carolina*]

This is great news!

There is plenty in the literature about partial EN helping to maintain remission in addition to maintenance meds. Whether or not it is necessary is another story and something you have to figure out on a case by case basis and definitely something you can discuss with the GI. We let our daughter drop EN after she got into good solid remission. She went into a flare a couple years later and I always wonder if we had her keep 1-2 shakes a day if it would have prevented that.

The weight gain can be partially due to the EN but also due to a healing colon which is evident in the calpro results. FWIW, colonic disease is a drama queen and usually produces really high FCP results so under 100 is a really good sign!

If you decide to ease up on the EN but are still concerned about putting on some extra weight, you could try Carnation Instant Breakfast. Those are really yummy and good for weight gain.

Remind me of why she is gluten free? Does she have celiac also? If so, celiac could (doesn't have to and doesn't always) raise calpro s that could also be contributing to the lower results. Either way take it and run with it!

Thank! Yes, she was diagnosed Celiac at same time last October. I’d read that Celiac can also cause a higher normal
FCP so 68 being just outside was great news. Very curious to see where we are at in a couple weeks. Good point on inflammation also factoring into weight gain, also reminds me the villi damage which is hopefully healing from the GF diet is also likely impacting. She’s getting a lot more tests this appointment at 5 month mark...FCP, CRP, Celiac panel, various vitamins, possibly others I’ve forgotten. I am so happy she is doing well for now but cautious given her case doesn’t seem typical at least from what gets posted about in here.

 

[Maya142]

If she doesn't like Boost, have you tried Ensure? Different flavors? I think there is also a juice kind of drink that Ensure has. There are also a lot of flavors. There is also Pediasure. Orgain is another one.

Tricks that can help - make the shake as cold as possible. Use a straw and put it in a cup with a lid, so she can't smell it.

I remember your daughter being very, very underweight, is that right? Under the 5th percentile? She has gained 7 lbs, which is GREAT, but I worry that she will lose weight if she stops drinking the shakes.

You could always try stopping one shake and see if she loses and if she does, start it again.

There is evidence that partial EN does help keep kids in remission. My daughter stayed on supplemental EN for 3 years or so. She really needed it for weight gain in the beginning, and at the point, formula was about 85% of her diet. But later, it was anywhere from 20-50% of her diet (usually closer to 40-50%).

For most of that time, she was in remission, and I am sure the formula helped (though she was on an anti-TNF which probably did the heavy lifting).

This might be something to run by your GI too - see what he/she says. If she still has a really low BMI, it might be a good idea to stick with the shakes so that she can gain some more weight. Because when kids flare, they often lose weight pretty quickly so it's good to have a "cushion."

 

[Carolina*]

If she doesn't like Boost, have you tried Ensure? Different flavors? I think there is also a juice kind of drink that Ensure has. There are also a lot of flavors. There is also Pediasure. Orgain is another one.

Tricks that can help - make the shake as cold as possible. Use a straw and put it in a cup with a lid, so she can't smell it.

I remember your daughter being very, very underweight, is that right? Under the 5th percentile? She has gained 7 lbs, which is GREAT, but I worry that she will lose weight if she stops drinking the shakes.

You could always try stopping one shake and see if she loses and if she does, start it again.

There is evidence that partial EN does help keep kids in remission. My daughter stayed on supplemental EN for 3 years or so. She really needed it for weight gain in the beginning, and at the point, formula was about 85% of her diet. But later, it was anywhere from 20-50% of her diet (usually closer to 40-50%).

For most of that time, she was in remission, and I am sure the formula helped (though she was on an anti-TNF which probably did the heavy lifting).

This might be something to run by your GI too - see what he/she says. If she still has a really low BMI, it might be a good idea to stick with the shakes so that she can gain some more weight. Because when kids flare, they often lose weight pretty quickly so it's good to have a "cushion."

Yes, she was underweight. The 7-9 is a great gain for her height, but also know it wouldn’t take much to get us back to where she was. We’ll likely stick with the shakes regardless, I’m afraid to change anything when she’s doing so well. We do keep the shakes very cold and use the big smoothie straws she likes. I’ve tried all the ones you mentioned except the orgain. I just hate the daily battle, it’s a rotten way to send her off to school and then end our day. I was considering whether high calorie smoothies could be a replacement for maybe 1, but again I go back to my fear of changing anything. She was doing 3 regular boost and then we moved to the 2 boost plus with extra calories. She used to eat a ton but doesn’t eat as much with the drinks.

 

[Maya142]

Hmmmm...sorry, no more advice . My daughter was told because she was so underweight, she either needed to drink her shakes or use a tube. It was a huge battle to get her to drink them at first. After a while, she got used to drinking them, but still could not drink enough to gain weight (or even maintain it).

That's when we ended up with an NG tube and that actually made life a lot simpler! She inserted it every night before bed and took it out in the morning, so no one at school had to know.

You could try rewarding her - if she doesn't argue/fight for a week, she gets a small reward. I know some parents have done that for EEN/supplemental EN.

 

[Carolina*]

Sorry to post again, but wanted to put this out there. We left our original Doctor that diagnosed from Ped referral as it wasn't a fit and we moved to a good health system with a female Doctor which we preferred. Now while researching (will that ever end?!), I see a local Doctor at the other large health system wrote about Indeterminate Crohn's Colitis. This has me wondering if we should switch even though we are happy and she is currently doing well (knock on wood).

An excerpt from his writing that fits her exactly...

As an example of this subjectivity, consider the child with pancolitis and mild histologic inflammation of the terminal ileum. One clinician may diagnose “ulcerative colitis with backwash ileitis”, another may diagnose indeterminate colitis, and a third may consider this a case of Crohn disease.

Looks like he just won the Rosenthal Award from the Crohn's and Colitis Foundation. I need to read more about what that means.

 

[crohnsinct]

IDK....personally, at this point in time, I don't think the label is as important as the fact that they are dx'ing her with IBD and treating her accordingly. She is doing well and you all like your current GI. I would lean toward sticking with the current doc with an eye on the other should the relationship go south.

I know we often say that the 5 ASAs are not usually effective in Crohn's but there are certain cases where they are or they are for a while. My daughter has a friend with Crohn's totally isolated to the colon. She has been on Pentasa for 6 years and is doing great. As long as you and the current GI do not get so entrenched in the current drug that you don't see the writing on the wall when it is time to move on, I think you are good.

P.S. a same sex GI comes in handy as the kids get older...just sayin'. Not necessary and no reason to keep a GI you aren't happy with but if you are happy.....

 

[crohnsinct]

P.S. my girls were dx'd by and treated for years by a world renown GI. He has published more studies than any other GI. Has won numerous awards etc.

I still had to hound him for three years to get my second daughter dx'd. He agreed to run the fecal cal to "put the question to bed". SURPRISE her fecal cal was 1050 and her scopes dx'd Crohn's.

My first daughter was in a flare for two years under his care.

We are with a young doctor now with no awards or accolades. He is extremely bright and passionate about patient care and he is getting O back on track.

Go with your gut! (pun totally intended). There are good doctors everywhere and if I recall correctly you are at a well respected institution.

 

[Carolina*]

IDK....personally, at this point in time, I don't think the label is as important as the fact that they are dx'ing her with IBD and treating her accordingly. She is doing well and you all like your current GI. I would lean toward sticking with the current doc with an eye on the other should the relationship go south.

I know we often say that the 5 ASAs are not usually effective in Crohn's but there are certain cases where they are or they are for a while. My daughter has a friend with Crohn's totally isolated to the colon. She has been on Pentasa for 6 years and is doing great. As long as you and the current GI do not get so entrenched in the current drug that you don't see the writing on the wall when it is time to move on, I think you are good.

P.S. a same sex GI comes in handy as the kids get older...just sayin'. Not necessary and no reason to keep a GI you aren't happy with but if you are happy.....

Thanks, this is what I needed to hear. I can’t help but be paranoid over the 5-asa part, but glad to hear you say it again. I do believe the female is important, that’s exactly why I chose who I did. It was just so nice to read the other Doctors words as it was exactly her situation and said better than I could ever articulate.

 

[Maya142]

My daughter really prefers being with a female GI, especially since she has had fissures etc.

But I agree with crohnsinct, I would stay if you are happy. The exact dx doesn't really matter right now because she's being treated and she's doing well.