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does this seem like IBD?

HI,Im new to this group and originally posted under general forum instead here. my 8 year old is going for colonoscopy and endoscopy in 2 weeks to confirm diagnosis. I am so confused and scared. Her symptoms started or I noticed about 2 months ago. She had loose .mushy ,diarrhea. Her bowl movement is once sometimes twice a day. there were days she go every other day. Sometimes she went and needed to go back to finish it. She sometimes complained her stomach ache but only before bowl movement. After she was done no more pain. She eats and drink everything, she is very active. We started probiotic and seems she is having solid stool back again.
Doctor ran all the blood and stool test and this are the findings
WBC 12.9 little high
hemoglobin, MCV, MCH, MCHV low
IgA 321 normal range 51-220
CRP 49 normal range 0-9
CALPROTECTIN 653
occult blood fecal positive
H pylori negative
parasites, bacteria, viruses GI panel not detected
c difficile toxin negative
endomysial antibody IgA negative
How does this seem to you? Last 7 days she goes poop once sometimes twice a day and has normal solid stool and no pain at all. I am confused now what shuld I do.
thank you
 

Scipio

Well-known member
Location
San Diego
The low hemoglobin, positive fecal blood, high CRP, and high fecal calprotectin are all consistent with IBD. But the scopes will be the key to getting a diagnosis. Until then just sit tight and try not worry too much (Impossible for a parent, I know).
 
The low hemoglobin, positive fecal blood, high CRP, and high fecal calprotectin are all consistent with IBD. But the scopes will be the key to getting a diagnosis. Until then just sit tight and try not worry too much (Impossible for a parent, I know).
thank you Scipio, the question I have myself could any other non GI related issues cause her calprotectin high , hemoglobin low? just wonder what other issues she could possibly face.
 

Scipio

Well-known member
Location
San Diego
thank you Scipio, the question I have myself could any other non GI related issues cause her calprotectin high , hemoglobin low? just wonder what other issues she could possibly face.
Celiac disease could cause both of those test results, although the calprotectin tends to go higher with active IBD than it does with celiac. And of course celiac disease is another GI disease. Some non-GI conditions could certainly lower the hemoglobin, but it would probably not raise fecal calprotectin, since by definition, the presence of calprotectin in the stool means inflammation somewhere in the gut. Non-GI inflammation would be unlikely to cause the calprotectin to show up in the gut.

Calprotectin in the stool almost always means an elevation of activated neutrophils (a type of white blood cell) in the gut, since it is the neutrophils that release the calprotectin.
 

Maya142

Moderator
Staff member
It could be IBD considering her Fecal Cal is high and she's anemic. Infections can make FCP go up but it looks like those have been ruled out. Any update from the tests?
 
hi have an appoitment this week to see what biopsy says. waiting is killing me. After colonoscopy the doc only said to me to her it appears like Crohn, showed me images with small ulcers in colon and little mucous around valve where small and large intestine meets. the strange thing my daughter has no symptoms . She goes poop almost every day once or twice, the poop has been ok, few times mushy but no watery watery.
I also rechecked her CBC after month and her CRP is 23, still high, but coming down from 49.
 

my little penguin

Moderator
Staff member
You can have damage on the inside (such as ulcers ) but few symptoms on the outside .
Given ulcers and mucus at the terminal illeum (where small intestines meets the large intestine)
Add in high fecal caloprotectin and high crp
Probably crohns .
Hopefully they can get a plan to get her on meds to stop the inflammation and damage .
And tell you the diagnosis
 
hi so little update here. My daughter was diagnosed with Crohn. The doctor said it is mild. this is what biopsy says- terminal illeum moderate chronic active ilritis, ileocecal valve moderate chronic active colitis. descending, sigmoid mild chronic active colitis.
So overwhelmed now, the appointment we went was to hear diagnosis and get educated about Crohn. We haven't really discussed treatment yet. Im going to have second opinion next week. my question now is of course if she needs to be on medication and what medication brings her to remmision without any side effects. Her symptoms are- she goes to bathroom one sometimes twice the top three times day. No diarrhea for last few weeks, occasional belly pain right before pooping.
anyone experience with Mesalamine? what are your thoughts? what are the good question to ask when going for second opinion ? thank you
 

Scipio

Well-known member
Location
San Diego
my question now is of course if she needs to be on medication and what medication brings her to remmision without any side effects. Her symptoms are- she goes to bathroom one sometimes twice the top three times day. No diarrhea for last few weeks, occasional belly pain right before pooping.
anyone experience with Mesalamine? what are your thoughts? what are the good question to ask when going for second opinion ? thank you

I'm sorry to hear of your daughter's diagnosis. There are non-pharmaceutical options for treating your daughter's Crohn's, primarily EEN, which some of the other parents of kids with Crohn's can tell you much more about than I can.

But I will say that even though some docs still prescribe mesalamine, if has been shown in clinical trials to be no better than placebo in treating Crohn's disease. It's a very mild medication that works better for ulcerative colitis than it does for Crohn's. Mesalamine treats only the inner lining of the gut, but Crohn's inflames all layers clear through the gut. So if medication is given, IMO, it should be something stronger and better suited to Crohn's than mesalamine.
 

my little penguin

Moderator
Staff member
Sorry your here
Mesalamine for crohns is like giving aspirin for a brain tumor -not going to hurt but also not going to help much.
Even if she doesn’t have many symptoms on the outside _the inflammation they found on the inside means the cells are changing over and over .

the intestine when healthy is like a garden hose
Soft flexible and moveable .
Inflammation cycles cause scar tissue which is rock hard like pvc pipe and also narrowing .
The narrowing can cause the healthy areas of intestine to bulge or new fistulas (ultra thin formed intestine) to form tunnels around the thick scar tissue
This is why it’s so important to eliminate inflammation early while it’s mild .

my kiddo was dx at age 7 and now is 20.
Yes he takes meds which have potential side effects .
I do stress potential .
But his intestine does not have scar tissue and is pink and healthy - all of it after 13 years .

meds on the lower levels
Methotrexate which is given in tiny doses for crohns
But is given regularly to kids as young as 2 with juvenile arthritis without issues.
I can make your child feel nausea and fatigue .
It can be given by shots /pills
My kiddo tried both and did better on pills .

een (exclusive enteral nutrition) is formula only - no solid food
This can be used instead of steriods.
It brings on remission
But typically is only done for 8 weeks since not eating solid food is extremely difficult for kids long term -mentally ,physically and psychologically/socially.
My kiddo did een 3 times.

in order to keep up growth and weight with their peers most crohns kids
Do meds plus supplemental shakes (2-3 a day )
This let my kiddo grow to over 6 ft tall .
Before Gi’s started this most kids with crohns didn’t grow much at all.
So shakes are a must .

Shakes as supplements or een can be
Pediasure , kids boost , peptamen jr , elecare jr , neocate jr.
If prescribed by the Gi most insurance will cover the formula under the durable medical equipment's portion -no one covers it under prescription plans .

ask a lot of question
No med is without potential side effects
Even infant Tylenol can cause death ,liver failure,Steven Johnson syndrome
But the good it does outweighs the small risk of bad for most babies .

hugs
 
Sorry your here
Mesalamine for crohns is like giving aspirin for a brain tumor -not going to hurt but also not going to help much.
Even if she doesn’t have many symptoms on the outside _the inflammation they found on the inside means the cells are changing over and over .

the intestine when healthy is like a garden hose
Soft flexible and moveable .
Inflammation cycles cause scar tissue which is rock hard like pvc pipe and also narrowing .
The narrowing can cause the healthy areas of intestine to bulge or new fistulas (ultra thin formed intestine) to form tunnels around the thick scar tissue
This is why it’s so important to eliminate inflammation early while it’s mild .

my kiddo was dx at age 7 and now is 20.
Yes he takes meds which have potential side effects .
I do stress potential .
But his intestine does not have scar tissue and is pink and healthy - all of it after 13 years .

meds on the lower levels
Methotrexate which is given in tiny doses for crohns
But is given regularly to kids as young as 2 with juvenile arthritis without issues.
I can make your child feel nausea and fatigue .
It can be given by shots /pills
My kiddo tried both and did better on pills .

een (exclusive enteral nutrition) is formula only - no solid food
This can be used instead of steriods.
It brings on remission
But typically is only done for 8 weeks since not eating solid food is extremely difficult for kids long term -mentally ,physically and psychologically/socially.
My kiddo did een 3 times.

in order to keep up growth and weight with their peers most crohns kids
Do meds plus supplemental shakes (2-3 a day )
This let my kiddo grow to over 6 ft tall .
Before Gi’s started this most kids with crohns didn’t grow much at all.
So shakes are a must .

Shakes as supplements or een can be
Pediasure , kids boost , peptamen jr , elecare jr , neocate jr.
If prescribed by the Gi most insurance will cover the formula under the durable medical equipment's portion -no one covers it under prescription plans .

ask a lot of question
No med is without potential side effects
Even infant Tylenol can cause death ,liver failure,Steven Johnson syndrome
But the good it does outweighs the small risk of bad for most babies .

hugs
thank you so much for your input. I will ask many questions and I know to decide which treatment to choose is very individual and hard to make.
You mentioned Methotrexate, was this firs med you went with or did you start on something else? just curious. I am not sure if I shuld jump to biologic right away. Im thinking her case is very mild without symptoms really, not having blood and stool test result I wuld not know she has something like Crohn. I am worry if I wuld go biologic and it won't work then there is nothing else to try.
Also EEn not sure if this wuld work for my daughter. She can have liquid drink, but she also need to chew something. It wuld be so hard. The doctor mentioned SCD diet . she is dairy free now and very limited simple sugars.

also how do you monitor and how often if something works.
 

my little penguin

Moderator
Staff member
My child was 7 so he started with mesamalmine while we waited for a second opinion .
That was 13 years ago before the recommendations came out not to use it as a monotherapy for Crohn’s disease .
He said on mesamalmine for a month (wait time for second opinion out of state ) .
He had very mild disease .
I didn’t think he was that sick since he didn’t have diarrhea or bloody stool etc…
Just vomiting once every week or two and belly pain.
Now when I look at those pictures see how pale and sickly he was at the time .

he then did een and 6-mp
6-mp caused liver issues after 8 months .
He didn’t get any better and developed vasculitis.
They no longer recommend 6-mp or aza or imuran since they increase lymphoma risk big time .
He then went on methotrexate.
That just made him sick by itself and vasculitis came back when we stopped steriods
That was three more months .
One year after diagnosis he tried remicade .
I didn’t think he needed a biologic .
He was still vomiting every other week but not getting better.
Within days of remicade
He looked like a new kid was playing /swimming competitively again, and getting into normal kid mischief .
I thought he was just a really good kid who never got into any trouble
Nope he was just to sick to want to do anything .

he currently takes Stelara plus methotrexate.
He has crohns and juvenile arthritis.
Saving a higher level med just so you can have it is never a good idea
Getting your child inflammation under control as fast as possible and keeping it there is key

some folks on here have been on remicade for many decades .
Mine has been on Stelara for 7 years now .
So … they can last a long time once you find a med that works .
Everyone is different
No two responses are the same to meds or een
It is very individualized

at the beginning I was insistent that I would only give him een and he would be fine
No pesky evil meds for him
Took a while but I learned .
The best med and only med is the one that works
Hugs 🤗
 
My child was 7 so he started with mesamalmine while we waited for a second opinion .
That was 13 years ago before the recommendations came out not to use it as a monotherapy for Crohn’s disease .
He said on mesamalmine for a month (wait time for second opinion out of state ) .
He had very mild disease .
I didn’t think he was that sick since he didn’t have diarrhea or bloody stool etc…
Just vomiting once every week or two and belly pain.
Now when I look at those pictures see how pale and sickly he was at the time .

he then did een and 6-mp
6-mp caused liver issues after 8 months .
He didn’t get any better and developed vasculitis.
They no longer recommend 6-mp or aza or imuran since they increase lymphoma risk big time .
He then went on methotrexate.
That just made him sick by itself and vasculitis came back when we stopped steriods
That was three more months .
One year after diagnosis he tried remicade .
I didn’t think he needed a biologic .
He was still vomiting every other week but not getting better.
Within days of remicade
He looked like a new kid was playing /swimming competitively again, and getting into normal kid mischief .
I thought he was just a really good kid who never got into any trouble
Nope he was just to sick to want to do anything .

he currently takes Stelara plus methotrexate.
He has crohns and juvenile arthritis.
Saving a higher level med just so you can have it is never a good idea
Getting your child inflammation under control as fast as possible and keeping it there is key

some folks on here have been on remicade for many decades .
Mine has been on Stelara for 7 years now .
So … they can last a long time once you find a med that works .
Everyone is different
No two responses are the same to meds or een
It is very individualized

at the beginning I was insistent that I would only give him een and he would be fine
No pesky evil meds for him
Took a while but I learned .
The best med and only med is the one that works
Hugs 🤗
thank you so much
more Im reading about it and listening everyone stories and experiences I see the biologics has changed and helped. I thought I can buy time with Mesalmime since she is mild but now reconsidering if it is not jist waste of time. I of course have ro wait to see what the doctor says but the decision will be on me.
 

my little penguin

Moderator
Staff member
Cochran reports do not recommend using mesamalmine as the only drug for crohns .
It acts like a cream and only treats to top layer of the intestine .
Which is great for ulcerative colitis .
However think of crohns like a very thick sandwich (bread ,lettuce,tomatoes, cheese ,meat mayo etc…)
Mesamalmine is like putting a spread only on the outside of the top of the bread .
The rest of the sandwich is untouched .
In this case the rest of the intestine is allowed to simmer woth inflammation over and over .
Each cycle increases scar tissue risk and cancer risk .
 
So went to see other doctor and she said as the first one recomending biologic. Since my daughter is mild to moderate I have privilage to choose between Humira and Remicade. I made my research and seems like biologic are the least evil. I agreed with Humira since is easy to aplicable . We travel for more then 8 weeks over the summer so I can't imagine with infusions. But now Im stuck and do not know how the system works. The doctor submitted to insurance and they of course denied. any advice how to speed things up? any tips how to get it approved?
 

my little penguin

Moderator
Staff member
Sign up with my humira
It’s a copay card for commercial insurance
But can not be used with state/federal insurance
Insurance always rejects the first submitted prior authorization.
Then the doc will appeal (provide documentation/history etc…)
But given she has never been on any other meds odds are not in your favor of approval for mild to moderate crohns for a biologic without trying lower level drugs

you can’t move it any faster
Doc office determines how fast things go
Nothing you can do on your end

remicade infusions are once every 8 weeks btw
That is easier to get since it goes through the medical side of your insurance
Not the prescription side
No different than having any other procedure at the hospital your just infusing remicade

Humira goes through prescription side of insurance and is harder to get oddly enough
 
met with the doctor today, my daughter has florida kids care which is run thru state. the doctor said is normal to be denied, she appeld. lets see what happens. my daughter went today to intestinal ultrasound and interestingly the colon did not show inflammation. the inflammation was showen on illeocecal valve and small intestine. the doctor ordered MRE to see small intestine. im confused now. the biopsy said mild to moderate colitis, the ultrasound did not pick up. she said the inflamamation is in small bowel...so confusing to me now.
 

my little penguin

Moderator
Staff member
Just means she is inflamed in many areas .
Scopes can see a lot of the large intestine and very little of the small intestine.
Imaging has a better look at the small intestine.
Standard is an MRE (mri with entography) where the child drinks barium to enhance the image .
Ultrasound is starting to be used more but …
Can be harder to read and must be done by someone with experience with crohns patients not just ultrasound.
My son has used ultrasound before but only because he is allergic to contrast dye and other drugs needed for MRE and CTE .

fingers crossed the appeal goes through
I have never had a drug approved on the first submittal even if it was a drug that he was still currently taking .
 
yes im having ultrasound scheduled with someone highly experienced and we are sheduled for MRE also (in April unfortuanately). Meantime, we have repeated calprotectin and interestingly is down. how do you explain this? in 1/24 calprotectin was 653 on 3/12 129 (almost normal) what is the explanation? Like I mentioned she has no symptoms at all. the only changes she does are dietary changes.
 

Maya142

Moderator
Staff member
Scopes are more accurate than an ultrasound and sometimes mild inflammation that is seen on biopsy is not visible visually even using the scope. So it's very possible that it's not picked up on an intestinal ultrasound or MRE. It doesn't necessarily mean it's gone away.
It sounds like your child has disease in many areas, though thankfully it is mild still. My daughter was about the same when diagnosed - small ulcers in her colon, inflammation on every biopsy in her colon, a red and inflamed terminal ileum that bled when biopsied. We went straight to biologics since she was already on them for juvenile idiopathic arthritis, so we switched to Remicade and thankfully her Crohn's is still called "mild to moderate." It worked very well for her!
 

my little penguin

Moderator
Staff member
129 is not normal
15 is normal
Fecal caloprotectin can vary from day to day and week to week .
Inflammation found on biopsy is what they are treating .

If you froze the sample
Did not get it to the lab quickly
Refrigerated it
Or the lab itself froze it /refrigerated it took longer to etc…
These can all change the values.
 
129 is not normal
15 is normal
Fecal caloprotectin can vary from day to day and week to week .
Inflammation found on biopsy is what they are treating .

If you froze the sample
Did not get it to the lab quickly
Refrigerated it
Or the lab itself froze it /refrigerated it took longer to etc…
These can all change the values.
the sample was taken at 7.30 am and delivered to lab 8 am so that shuld not be problem
 
hi, she is doing good, no pain , solid normal stool. We just repeated blood work that doctor ordered and see the inflammation looks like is down from beginning (january)
CRP March - 16 January 49 ( normal range 0-9)
ESR 38 normal range (0-32)
hemoglobin 10.6 normal range 11.7-15.4)
RDW 19.6 January 19.4 (normal range 11.7-15.4)
platelets March - 493 January - 654 (normal range 150-450)
Iron saturation March 9, in January 6 (normal range 15-55)
Iron. 26 March, in Janaury 17 (normal range 28-147)
Albumin 3.9, in january 4.2 (normal range 4.2-5.0)
glucose 67, in january 44 (normal range 70-99)

everything else normal range

she is still on any medication.
 
Those are concerning numbers, and you do need to focus on getting them down even if symptoms aren't bad. I recommend Stelara over Humira or Remicade.
 

my little penguin

Moderator
Staff member
That diet won’t do anything for inflammation caused by crohns
Diets that are proven to help are een and cced
Crohns exclusive diet
Een is hard for older kids but not impossible and does reduce inflammation quickly without steriods
Even once humira is approved
You need a plan to reduce inflammation
That is either steriods or een or both
Humira takes 3-5 months to be effective even with steriods /een
It’s not a take and works things
Until it’s effective the inflammation is doing damage on the inside even if she doesn’t have visible symptoms outside .
 

my little penguin

Moderator
Staff member
Wanted to add once it’s under control then een is not needed
The less restrictive diet the better once they are teens
Puberty makes the disease ridiculous to control
The hormones fuel inflammation at such a high level the meds can’t keep up
Restrictions for diets on teens make them more likely to not follow it (Blame hormones )
Getting things under control as quickly as possible so your child can experience normal before puberty .

extra calories are needed to sustain growth since kids with crohns are constantly battling inflammation.
Een for 8 weeks with humira
Then just 2 shakes a day to keep up growth plus food
 
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