Crohn's Disease Forum » Parents of Kids with IBD » "Never think about Crohn's"


 
01-14-2018, 10:43 AM   #1
Carolina*
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"Never think about Crohn's"

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.
01-14-2018, 11:12 AM   #2
my little penguin
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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
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01-14-2018, 11:21 AM   #3
my little penguin
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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
01-14-2018, 11:24 AM   #4
Carolina*
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Join Date: Oct 2017
Location: North 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.
01-14-2018, 11:42 AM   #5
crohnsinct
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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.
__________________
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-14-2018, 12:06 PM   #6
Carolina*
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Location: North 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.

Last edited by Carolina*; 01-14-2018 at 12:44 PM.
01-14-2018, 12:11 PM   #7
Maya142
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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.
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diagnosed with Crohn's Disease at 16
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Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-14-2018, 01:07 PM   #8
Carolina*
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Location: North 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.
01-14-2018, 01:12 PM   #9
my little penguin
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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
01-14-2018, 01:24 PM   #10
Maya142
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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.
01-14-2018, 01:49 PM   #11
Carolina*
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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.
01-14-2018, 02:26 PM   #12
my little penguin
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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
01-14-2018, 02:29 PM   #13
Carolina*
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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?
01-14-2018, 02:32 PM   #14
Carolina*
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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.
01-14-2018, 02:37 PM   #15
my little penguin
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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
01-14-2018, 02:50 PM   #16
Carolina*
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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.
01-14-2018, 03:12 PM   #17
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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!
01-14-2018, 03:12 PM   #18
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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?
01-14-2018, 03:14 PM   #19
Maya142
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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.
01-14-2018, 03:26 PM   #20
Carolina*
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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.
01-14-2018, 03:35 PM   #21
my little penguin
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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
01-14-2018, 03:40 PM   #22
Maya142
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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.
01-14-2018, 03:57 PM   #23
Carolina*
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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.
01-14-2018, 04:06 PM   #24
Maya142
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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.
01-14-2018, 04:32 PM   #25
Carolina*
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Location: North 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.
01-14-2018, 04:51 PM   #26
my little penguin
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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
01-14-2018, 05:05 PM   #27
Carolina*
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Join Date: Oct 2017
Location: North 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.
01-14-2018, 05:13 PM   #28
crohnsinct
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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.
01-14-2018, 05:13 PM   #29
my little penguin
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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
01-14-2018, 05:19 PM   #30
crohnsinct
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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
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