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Not Sure

Hello, my 13 year old daughter was having diarrhea with blood. But no pain anywhere. She had a colonoscopy and endoscopy done, blood work and stool sample. Stool sample only showed blood. Blood work was relatively normal and the main markers for Crohn’s, the CRP & ESR were normal.

The colonoscopy showed inflammation of the large and small intestine. They also took biopsies...

The Dr. called a few days ago and said the Crohn’s “markers” in the biopsy were negative and they are not sure yet what she has. He said it still could be Crohn’s.

We are confused with his outcome since it basically was inconclusive only showing inflammation. Recently she has not had any diarrhea or bloody stool.

We are going to follow up with a GI Dr. but in the mean time we are wondering what she could have.

What are your thoughts on this?
 
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it is not uncommon to have normal CRP and ESR but still have IBD inflammation. One of my daughters always returns perfectly normal blood labs but could still be in a bad flare.

When they did the stool studies, did they test for fecal calprotectin? This is very specific to gut inflammation. It isn't conclusive to IBD but certain very high values will make doc lean more toward an IBD diagnosis.

I am not really sure what "markers" in the biopsy he is referring to. It could be granulomas. If granulomas are found then they check the Crohn's box but a lot of people with Crohn's don't have granulomas on biopsy because it just depends on the exact spot where they got the biopsy from. Also, even if they don't find granulomas, that doesn't mean that a patient can't have Ulcerative Colitis.

How long was she having the diarrhea with blood? How much blood? How is her weight and growth? Have either stalled or has she lost weight? Those are also indicators of IBD and other gastro illnesses.

When was the stool sample taken? Was it when her diarrhea and bleeding were still active or was it after it all cleared? If after it cleared and there was still blood found in the sample, it is coming from somewhere and further investigation is warranted.

You can have inflammation in the intestines just from a gastro bug. Without knowing more specifics about the type of inflammation they found it is hard to say. Did they do an upper endoscopy?

The colonoscopy only gets to a small part of the small intestine. To get a complete picture of what is going on, you need to look at the whole of the small bowel. For that you would do a MRE or a pill cam.

Of all the gastro illnesses, bloody diarrhea points the most toward IBD. However, while IBD can wax and wane, it is not usual that prior to diagnosis diarrhea and blood clear on their own. Pretty much by the point you are having bloody diarrhea it is going to just get progressively worse until it is treated.

Sorry, I am not giving you very clear cut advice here. The IBD world is different for everyone and there is no real clear cut definition.

It is great that you are going to see a GI. I think you will get a lot more answers indirection at that appointment.

I am sure other parents will chime in here with things I am missing. It is way past my bedtime and I am not thinking very clearly.
 
it is not uncommon to have normal CRP and ESR but still have IBD inflammation. One of my daughters always returns perfectly normal blood labs but could still be in a bad flare.

When they did the stool studies, did they test for fecal calprotectin? This is very specific to gut inflammation. It isn't conclusive to IBD but certain very high values will make doc lean more toward an IBD diagnosis.

I am not really sure what "markers" in the biopsy he is referring to. It could be granulomas. If granulomas are found then they check the Crohn's box but a lot of people with Crohn's don't have granulomas on biopsy because it just depends on the exact spot where they got the biopsy from. Also, even if they don't find granulomas, that doesn't mean that a patient can't have Ulcerative Colitis.

How long was she having the diarrhea with blood? How much blood? How is her weight and growth? Have either stalled or has she lost weight? Those are also indicators of IBD and other gastro illnesses.

When was the stool sample taken? Was it when her diarrhea and bleeding were still active or was it after it all cleared? If after it cleared and there was still blood found in the sample, it is coming from somewhere and further investigation is warranted.

You can have inflammation in the intestines just from a gastro bug. Without knowing more specifics about the type of inflammation they found it is hard to say. Did they do an upper endoscopy?

The colonoscopy only gets to a small part of the small intestine. To get a complete picture of what is going on, you need to look at the whole of the small bowel. For that you would do a MRE or a pill cam.

Of all the gastro illnesses, bloody diarrhea points the most toward IBD. However, while IBD can wax and wane, it is not usual that prior to diagnosis diarrhea and blood clear on their own. Pretty much by the point you are having bloody diarrhea it is going to just get progressively worse until it is treated.

Sorry, I am not giving you very clear cut advice here. The IBD world is different for everyone and there is no real clear cut definition.

It is great that you are going to see a GI. I think you will get a lot more answers indirection at that appointment.

I am sure other parents will chime in here with things I am missing. It is way past my bedtime and I am not thinking very clearly.
Thanks so much for the info and taking the time to respond. To follow up on a few questions...

She was having the Diarrhea with blood for about 6 months, it wasnt watery just a soft stool. Recently her stool has been normal consistancy but still some blood. The stool test was done while she had the bloody soft stool and done before the colonoscopy and upper endoscopy were done. They called us with the stool test results and all they said was they were negative other then the obvious signs of blood. So I am not sure if they did the fecal calprotectin test. I assume they did but cant say for sure.

The "markers" I assume when they did the biopsies, they took numerous ones from the inflamed areas and those came back negative.

She has not lost weight and growth seems normal. The general explanation was she has inflammation in the large and small intestine. There was no ulcers or any polups. Nothing was found in the GI track or stomach. Again she has no pain whatsoever, only poops once a day, maybe twice which seems normal.
 

my little penguin

Moderator
Staff member
Get a copy of the pathology report from the upper and lower endoscopy.
Send her records to a large university pediatric hospital for ibd for a second opinion
This would include pathology report
Pathology slides
As well as docs notes /clinic visits and bloodwork

Doesn’t sound like the doc is telling you much
They would have very specific findings on the biopsy report and told you A ) what those were and B) if they were chronic or acute
Granulomas need to be found for some not all pathologist to check the crohns box
But other signs can be there as well

Did they do a pill cam or MRE ?
Please get a second opinion
 

my little penguin

Moderator
Staff member
Ohhh and there has to be a reason for the “general inflammation “ found in the intestine
Not “it just happens to be there “
Something is causing it abd just if the time that is crohns or UC
But can be other reasons
Get a second opinion.
 
Get a copy of the pathology report from the upper and lower endoscopy.
Send her records to a large university pediatric hospital for ibd for a second opinion
This would include pathology report
Pathology slides
As well as docs notes /clinic visits and bloodwork

Doesn’t sound like the doc is telling you much
They would have very specific findings on the biopsy report and told you A ) what those were and B) if they were chronic or acute
Granulomas need to be found for some not all pathologist to check the crohns box
But other signs can be there as well

Did they do a pill cam or MRE ?
Please get a second opinion
I will be sure to do that, we have a follow up app with a Gi in a few weeks so will see what he says. We will schedule a MRE and also maybe a pill cam after the MRE. He did mention chronic but I am not sure if thats because we told him the symptoms have been ongoing for 6 months or they somehow were able to tell its chronic by the tests.

Is it possible it can be a food allergy such a celiac and/or a gluten allergy. ? Would that cause the symptoms she is having. I know both me and my wife have been sensitive to gluten. I can still eat it but get occasional stomach aches. The wife cant eat it at all.
 

my little penguin

Moderator
Staff member
Celiac would be seen in an upper endoscopy (duodenum area ) more
And they would have said
True Ige mediated food allergy causes anaphylaxis
Celiac would cause blunting of the villa
Egids (eosinophilic gastrointestinal disease ) causes high eosinophils often a pre cursor to crohns

Ds was dx at 7 and now is almost 16
So it takes a while but you do
Learn the lingo
 

my little penguin

Moderator
Staff member
The biopsy slides can show things under the microscope that determine if there are changes in the cellular structure and if theses changes are acute or chronic
 
Ok well the goings on sounds less like colonic disease. Colonic disease tends more toward liquid diarrhea and much more frequency and urgency. Just because she doesn't have pain doesn't mean she doesn't have colonic disease either. My older daughter has severe colonic disease and it has to be really bad before she experiences pain.

ALSO to have Crohns you do NOT have to have diarrhea. Plenty of kids with small bowel diesease actually get constipation or go once a day even. Granted the presenting symptom with those kids is usually pain but honestly there is no rhyme or reason with this disease.

How much blood was she seeing? Was it streaks along the stool? A little on the toilet tissue? That kind "could" be fissures or hemorrhoids. If it was streaming out and you are seeing pooling in the toilet then more likely not a hemmie or fissure.

Was she by chance taking NSAIDS for anything chronic? high NSAID use "could" cause "some" inflammation in the digestive tract.

All this to say could be IBD or could be something else. Really glad you are seeing a GI. The GI will have much more info for you.
 
Ok well the goings on sounds less like colonic disease. Colonic disease tends more toward liquid diarrhea and much more frequency and urgency. Just because she doesn't have pain doesn't mean she doesn't have colonic disease either. My older daughter has severe colonic disease and it has to be really bad before she experiences pain.

ALSO to have Crohns you do NOT have to have diarrhea. Plenty of kids with small bowel diesease actually get constipation or go once a day even. Granted the presenting symptom with those kids is usually pain but honestly there is no rhyme or reason with this disease.

How much blood was she seeing? Was it streaks along the stool? A little on the toilet tissue? That kind "could" be fissures or hemorrhoids. If it was streaming out and you are seeing pooling in the toilet then more likely not a hemmie or fissure.

Was she by chance taking NSAIDS for anything chronic? high NSAID use "could" cause "some" inflammation in the digestive tract.

All this to say could be IBD or could be something else. Really glad you are seeing a GI. The GI will have much more info for you.
Got her Calprotectin result from the Dr. and it is 207 which he says is high and basically shows there is inflammation present.

The blood wasI would say not a whole lot but not minimal. When whipped it was on the paper and some was present around stool.
She has not taken any NSAIDS. After about 7 months now, she has had sporadic soft stool with some blood but no pain anywhere and no other symptoms.
 
207 is elevated. Not horribly but elevated and warrants further investigation. Small bowel disease returns lower levels and generally has a lower cut off than colonic disease so I would definitely have them look at her small bowel with either the MRE or pill cam.

IBD isn't the only thing that causes an increase in cal pro although it is the most likely.

That kind of blood "could" be fissure or hemmie. Otherwise they would have seen more evidence of where the bleeding was coming from during the scope i.e.: bleeding ulcers etc.

The good news is your doc is paying attention. A lot of docs might ignore this and stop investigating. It's also good she is feeling well. Hopefully you can figure this out quickly and get her the appropriate treatment before much damage is done.

Keep us posted.
 
207 is elevated. Not horribly but elevated and warrants further investigation. Small bowel disease returns lower levels and generally has a lower cut off than colonic disease so I would definitely have them look at her small bowel with either the MRE or pill cam.

IBD isn't the only thing that causes an increase in cal pro although it is the most likely.

That kind of blood "could" be fissure or hemmie. Otherwise they would have seen more evidence of where the bleeding was coming from during the scope i.e.: bleeding ulcers etc.

The good news is your doc is paying attention. A lot of docs might ignore this and stop investigating. It's also good she is feeling well. Hopefully you can figure this out quickly and get her the appropriate treatment before much damage is done.

Keep us posted.
Thanks again so much for the info, it much appreciated in the scary time. :)
 
I managed to get the biopsy results from my Dr. I have attached them here for anyone that has any experience in what they found. Much appreciated as always.
 

Attachments

my little penguin

Moderator
Staff member
Please get a second opinion
Based on biopsy results alone
Top three in the US for ped ibd
#1 chop (children’s of Philadelphia)
2 Boston children’s
3 cinncinati children’s

Call they have staff just for second opinions
To help you through the process
We did it not once but twice
We did not change my kiddos primary Gi until we moved
But the Gi did appreciate the second set of eyes to confirm crohns both times
(Yes Ds was complicated )
 
Mind you we are just moms and not medical experts but the rectal biopsy to me seems to be where the bleeding is coming from and crypt abscesses and crypt distortion are seen in IBD. Now, whether or not they are seen in other diseases, syndromes, infections etc I can't say because I can only look at this from a Crohn's lens.

Good luck at your appointment. Concentrate on the good in that her symptoms seemed to have resolved, your are on your way to a dx and it is early.

Are you in the U.S.?
 
Mind you we are just moms and not medical experts but the rectal biopsy to me seems to be where the bleeding is coming from and crypt abscesses and crypt distortion are seen in IBD. Now, whether or not they are seen in other diseases, syndromes, infections etc I can't say because I can only look at this from a Crohn's lens.

Good luck at your appointment. Concentrate on the good in that her symptoms seemed to have resolved, your are on your way to a dx and it is early.

Are you in the U.S.?
Yes I am in the U.S. We have been going to the Childrens Hospital of Pittsburgh. We have an app this Thursday morning.
 
Ohhh, I think they are a good one and ranked highly recently.

So was she seen by a GI prior to the scopes? Usually in the US you have to be seen by a GI before you move to scopes but not always. Did the GI you are seeing actually do the scopes? They don'y have to, it is just super helpful if they do but at larger teaching hospitals that is sometimes difficult arrange.

You will have answers soon enough. Hang in there!
 
Ohhh, I think they are a good one and ranked highly recently.

So was she seen by a GI prior to the scopes? Usually in the US you have to be seen by a GI before you move to scopes but not always. Did the GI you are seeing actually do the scopes? They don'y have to, it is just super helpful if they do but at larger teaching hospitals that is sometimes difficult arrange.

You will have answers soon enough. Hang in there!
Yes she was seen by a GI prior to the scopes. The same guy that did the scopes is who we are seeing this Thursday.
 
Hello everyone, its been awhile since I last posted. My daughter had her checkup today and the bloodwork is showing high levels of Amylase. According to the Doc, this means her pancreas is not right. However daughter is showing no signs of symptoms. So she thinks its due to the 5 ASA meds she is on as a rare side effect is acute pancreatitis. Have any of you experienced this? Dr want her to go off meds for a week just to see if levels come down, then if they do, go back on the med and see if they go up. If they do then its med related and will need to look into alternatives. This sucks because she has been doing good on the 5 ASA.

Thoughts ?
 

my little penguin

Moderator
Staff member
Tagging @Pilgrim
It happens
Pancreatitis stinks
But if it is the meds at least it’s an easy fix
Med changes can be scary but are sometimes necessary
Ds had liver enzyme issues with 6-mp so I understand your frustration

Fingers crossed for fast results and improvement on her pancreas
 
Tagging @Pilgrim
It happens
Pancreatitis stinks
But if it is the meds at least it’s an easy fix
Med changes can be scary but are sometimes necessary
Ds had liver enzyme issues with 6-mp so I understand your frustration

Fingers crossed for fast results and improvement on her pancreas
thank you as always. Do you have any recommendations on a different med besides biologics ? The Dr Kim at CHP was awesome by the way. She said biologics would be the last choice.
 

my little penguin

Moderator
Staff member
After 5-asa the next level is immunosuppressants
6-mp/imuran or methotrexate
Most don’t use 6-mp/imuran any more due to significant increase risk of lymphoma
Most use methotrexate
Although some don’t like to use mtx with teen girls due to birth defects it can cause

There are studies for crohns (not sure on UC)
That recommend earlier use of biologics within 3 months of diagnosis
Or top down (biologics first )at diagnosis

However
Science in crohns is always changing
When Ds was dx biologics were a last resort for the most severe only
Now that is not the case
Ds has been on biologics since age 8 now almost 16
But only has mild crohns
He was placed on biologics due to EIM ‘s and failing other lower level meds
 

my little penguin

Moderator
Staff member
Abstract
The emergence of mucosal healing as a treatment goal that could modify the natural course of Crohn's disease and the accumulating evidence showing that biologics are most effective in achieving mucosal healing, along with the success of early treatment regimens for rheumatoid arthritis, have led to the identification of early Crohn's disease and development of the concept of catching the therapeutic window during the early disease course. Thus, an increasing number of pediatric gastroenterologists are adopting an early biologic treatment strategy with or without an immunomodulator. Although early biologic treatment is effective, cost and overtreatment are issues that limit its early use. Currently, there are insufficient data on who will benefit most from early biologics, as well as on who will not need early or even any biologics. For now, top-down biologics should be considered for patients with currently known high-risk factors of poor outcomes. For other patients, close, objective monitoring and accelerating the step-up process by means of a treat-to-target approach seems the best way to catch the therapeutic window in early pediatric Crohn's disease. The individual benefits of immunomodulator addition during early biologic treatment should be weighed against its risks and decision on early combination treatment should be made after comprehensive discussion with each patient and guardian.

From
 

my little penguin

Moderator
Staff member
The treatment of pediatric inflammatory bowel disease has been revolutionized by the advent of biologic therapies, which have been shown to effectively treat symptoms, induce mucosal healing, and reverse growth impairment in many patients. However, experts continue to debate the positioning of biologics in IBD, and are seeking ways to better understand how to deliver optimal treatment to children affected by the disease.


Pediatric IBD rates are on the rise globally, and the 20% to 30% of patients with IBD onset before age 20 years often have more extensive, severe and complicated disease compared with those whose disease presents in adulthood. According to experts interviewed by Healio Gastroenterology, early treatment with biologics provides newfound hope for preventing these complications, though many factors must be considered when choosing an initial therapy for children. Unfortunately, despite their availability and impact, several barriers prevent the use of biologics as first-line therapies.

Payers, Guidelines Discrepancies
One major obstacle, experts agreed, is that most insurance policies require step-wise failure of conventional treatments before approving a biologic therapy.

A recent study published in Inflammatory Bowel Diseasesevaluated the criteria for approval of biologics and showed that the majority “do not comply with the current standard of care for treating IBD based on the severity of disease and best available pharmacologic therapy.” Why these policies require certain drugs to fail before considering biologics is unclear, according to study investigator Joseph D. Feuerstein, MD, of the division of gastroenterology at Beth Israel Deaconess Medical Center, Harvard Medical School, and colleagues.


“There are no clinical studies to indicate that mesalamine must be tried and proved unsuccessful before infliximab [Remicade, Janssen] or vedolizumab [Entyvio, Takeda] can be considered,” they wrote. “In contrast, delaying appropriate therapy results in ongoing disease activity and resultant complications.”

Jeffrey S. Hyams
This study showed that AGA guideline recommendations on the early use of biologics for patients with moderate-to-severe disease “are totally unaligned with insurance company policies requiring the failure of multiple agents before biologics are approved,” Jeffrey S. Hyams, MD, of the division of digestive diseases, hepatology, and nutrition at Connecticut Children’s Medical Center, said in an interview.

This is especially problematic for pediatric gastroenterologists, as insurance companies do not have separate treatment policies for children and adults even though children “require a much different approach,” he added. “One does not have an opportunity to wait for weeks to months in a sick child with growth failure to be treated with long-term corticosteroids and to wait for immunomodulators to fail. ... One doesn’t have that window in pediatrics, so there is a big disconnect between the insurers and what has become standard of practice.”

From https://www.healio.com/gastroenterology/inflammatory-bowel-disease/news/print/healio-gastroenterology/{da819b7d-e884-40c9-9a39-fbc6814bc7da}/concerns-controversies-in-pediatric-ibd-persist-in-era-of-biologics
 
After 5-asa the next level is immunosuppressants
6-mp/imuran or methotrexate
Most don’t use 6-mp/imuran any more due to significant increase risk of lymphoma
Most use methotrexate
Although some don’t like to use mtx with teen girls due to birth defects it can cause

There are studies for crohns (not sure on UC)
That recommend earlier use of biologics within 3 months of diagnosis
Or top down (biologics first )at diagnosis

However
Science in crohns is always changing
When Ds was dx biologics were a last resort for the most severe only
Now that is not the case
Ds has been on biologics since age 8 now almost 16
But only has mild crohns
He was placed on biologics due to EIM ‘s and failing other lower level meds
also they have not dx her with crohns yet. It’s still undetermined.
 

my little penguin

Moderator
Staff member
Have you had her biopsy slides re-read at chop , Cincinnati or Boston childrens ?
As well as imaging reviewed ?
Indeterminate ibd ?
Or working dx of ibd ?
Or working dx of crohns or UC ?
 

my little penguin

Moderator
Staff member
If they haven’t dx her with anything yet then
No biologics
Even immunosuppressants might be hard to get insurance coverage
Working dx means they aren’t 100% sure
But believe it’s close enough
Then insurance covers meds the same as if you have the full dx
 
Have you had her biopsy slides re-read at chop , Cincinnati or Boston childrens ?
As well as imaging reviewed ?
Indeterminate ibd ?
Or working dx of ibd ?
Or working dx of crohns or UC ?
last we were told was leaning towards UC. We forgot to ask the dr today about the dx. Always think of a bunch of Qs after we leave 😟 so far all meds have been covered.
 

my little penguin

Moderator
Staff member
Portal
Most places have a portal for questions or concerns
Typically most parents including me
Use the patient portals to update docs
And ask important questions such as hey what is my kiddos actual dx
Since you will be pulling the med for a week and giving an update in the portal
You could easily ask them if she has a “working dx” of xyz

Realize any patient portal is part of the permanent medical record


Definitely get a second opinion
At another place even if it’s just a record review
 
Portal
Most places have a portal for questions or concerns
Typically most parents including me
Use the patient portals to update docs
And ask important questions such as hey what is my kiddos actual dx
Since you will be pulling the med for a week and giving an update in the portal
You could easily ask them if she has a “working dx” of xyz

Realize any patient portal is part of the permanent medical record


Definitely get a second opinion
At another place even if it’s just a record review
Thank you as always
 
My daughter had acute pancreatitis at age 3 from Imuran (Azathioprine). If you catch the pancreas problems before an attack....be grateful! It is horrifyingly painful.

I would just recommend stepping up to Methotrexate rather than Imuran, as it is also hard on the pancreas.

We have found less side effects or problems with biologics. I honestly think they are safer drugs. But I get going up the med ladder.

Keep a close watch in the meanwhile. The first signs we had before pancreatitis was a notable loss of appetite.
 
My daughter had acute pancreatitis at age 3 from Imuran (Azathioprine). If you catch the pancreas problems before an attack....be grateful! It is horrifyingly painful.

I would just recommend stepping up to Methotrexate rather than Imuran, as it is also hard on the pancreas.

We have found less side effects or problems with biologics. I honestly think they are safer drugs. But I get going up the med ladder.

Keep a close watch in the meanwhile. The first signs we had before pancreatitis was a notable loss of appetite.
Thank you
 
Want to ditto Pilgrim. If it is Pancreatitis you are extremely lucky in that she hasn't had any symptoms yet. Pancreatitis from the meds is pretty easy to fix...change meds. It could also just be a blip which it seems your doc is trying to find out if that is the case.

As to dx....it sounds like you have a working dx of IBD and they just haven't put her in the U.C. or Crohn's column yet. That doesn't really matter as much except for the fact that UC responds better to 5 ASA's than Crohn's and much later when surgery (colectomy) is being considered (various considerations here but I won't bore you with the details now).

Next step? That is a tough one. MLP is right that with pediatric patients they like to get ahead of the disease as quickly as possible as studies have shown the sooner you can get disease under control the more you can change the course of the disease going forward (less severe complications etc). Since our kids will have many years of disease ahead of them, this is an important factor. Further, we want to capitalize on their growth window and not delay puberty development and cause problems there. So many pediatric GI's would choose to go with a biologic. They are actually talking a lot about de escalating therapy for patients who have been on biologics and in deep remission for years so as not to over treat them.

However, recently (the past two years so), there is a lot on the topic of not over treating patients with mild disease. It sounds like they feel your daughter falls in the more mild category. One of my daughters falls in this category. The next step there would be immunomodulators, Azathioprine and Methotrexate.

As Pilgrim said, if it is determined your daughter is having pancreatic issues, azathioprine is off the table. Even without pancreatitis, many pediatric GI's are no longer using azathioprine because of the risk profile and some cancer risks. That leaves Methotrexate. Although it is less expensive than the biologics and thought to be the step before biologics the risks with Methotrexate are actually scarier to me than with the biologics, even Humira or Remicade. But I am coming at this from a family with liver issues and Mtx is rough on the liver. The success rate with Methotrexate and Crohn's is about 50% (not a bad rate in the IBD world). Many pediatric GI's use an immonumodulator with the anti tnf biologics to help stop antibody formation for about 6 - 12 months. With my mild daughter the GI suggested trying Mtx first and we agreed. The issue with biologics is that once you start them, you can't experiment and go off and if disease returns go back on easily as many patients develop antibodies to the drug on a drug holiday. We used mtx as mono therapy for a year. It didn't work alone. We ended up adding Remicade and it worked for her. After two years we stopped mtx.

Methotrexate has a high risk of birth defects. For this reason GI's will almost always require a pregnancy test prior to starting and some will ask a teen girl to start birth control.
 
Want to ditto Pilgrim. If it is Pancreatitis you are extremely lucky in that she hasn't had any symptoms yet. Pancreatitis from the meds is pretty easy to fix...change meds. It could also just be a blip which it seems your doc is trying to find out if that is the case.

As to dx....it sounds like you have a working dx of IBD and they just haven't put her in the U.C. or Crohn's column yet. That doesn't really matter as much except for the fact that UC responds better to 5 ASA's than Crohn's and much later when surgery (colectomy) is being considered (various considerations here but I won't bore you with the details now).

Next step? That is a tough one. MLP is right that with pediatric patients they like to get ahead of the disease as quickly as possible as studies have shown the sooner you can get disease under control the more you can change the course of the disease going forward (less severe complications etc). Since our kids will have many years of disease ahead of them, this is an important factor. Further, we want to capitalize on their growth window and not delay puberty development and cause problems there. So many pediatric GI's would choose to go with a biologic. They are actually talking a lot about de escalating therapy for patients who have been on biologics and in deep remission for years so as not to over treat them.

However, recently (the past two years so), there is a lot on the topic of not over treating patients with mild disease. It sounds like they feel your daughter falls in the more mild category. One of my daughters falls in this category. The next step there would be immunomodulators, Azathioprine and Methotrexate.

As Pilgrim said, if it is determined your daughter is having pancreatic issues, azathioprine is off the table. Even without pancreatitis, many pediatric GI's are no longer using azathioprine because of the risk profile and some cancer risks. That leaves Methotrexate. Although it is less expensive than the biologics and thought to be the step before biologics the risks with Methotrexate are actually scarier to me than with the biologics, even Humira or Remicade. But I am coming at this from a family with liver issues and Mtx is rough on the liver. The success rate with Methotrexate and Crohn's is about 50% (not a bad rate in the IBD world). Many pediatric GI's use an immonumodulator with the anti tnf biologics to help stop antibody formation for about 6 - 12 months. With my mild daughter the GI suggested trying Mtx first and we agreed. The issue with biologics is that once you start them, you can't experiment and go off and if disease returns go back on easily as many patients develop antibodies to the drug on a drug holiday. We used mtx as mono therapy for a year. It didn't work alone. We ended up adding Remicade and it worked for her. After two years we stopped mtx.

Methotrexate has a high risk of birth defects. For this reason GI's will almost always require a pregnancy test prior to starting and some will ask a teen girl to start birth control.
thanks for the info. As for the birth defects, what if down the road she wants to have kids. Would it just be a matter of going off the Methotrexate until after the baby would be delivered. I know I am thinking far ahead as she is only 13 but I like to think long term.
 
Yes. It is as simple as just going off methotrexate for a specified amount of time prior to trying to conceive. She would likely have to start a different med to control disease while off methotrexate. Incidentally, this goes for males using methotrexate also. Should use birth control while using methotrexate.
 
Most of you know I had a hard time dealing with the DX as my anxiety got the best of me. But after a lot of you taking the time to post here to help me made my anxiety and acceptance much better/easier. However now with this pancreatitis due to her meds has me back to the dark place! Now I am scared and not sure what to think. 😔
 
Thank you, I know I may overreact but its just the worrying that gets to me. I wish I could get to the spot I was in a month ago when I accepted the dx and she was doing well on her meds. Now with this new thing where she might have to change meds is what’s got me worried.
 
Nolan11 - the good news is you have adjusted before so you know you can do it! Also if this is med induced it is an easy fix! Things are fluid with this disease and the treatments. You will have times where things are maybe good for a few years and then a very changing environment for a long while.

I am hoping that all of this was one of our infamous blips and that all settles down for you.
 
Nolan11 - the good news is you have adjusted before so you know you can do it! Also if this is med induced it is an easy fix! Things are fluid with this disease and the treatments. You will have times where things are maybe good for a few years and then a very changing environment for a long while.

I am hoping that all of this was one of our infamous blips and that all settles down for you.
Thank you, what do you mean by blip ?
 
Blip - not exactly a medical term but definitely a Crohn's Forum term.

Every once in a while any person's blood results will show a crazy elevated or decreased value for one thing or another. If you look at just that value you might freak out but often you wait and the very next blood draw everything returns to normal. No explanation as to why it happened. It has happened MANY times to my girls. Crazy low white blood counts or liver counts etc. So we waited, repeated labs a little earlier than we normally would have and everything returns to normal. A couple of times we have held meds and retested, gotten normal results and resumed meds and went along our happy way.

Maybe I should submit that definition of blip to Websters?!
 
Blip - not exactly a medical term but definitely a Crohn's Forum term.

Every once in a while any person's blood results will show a crazy elevated or decreased value for one thing or another. If you look at just that value you might freak out but often you wait and the very next blood draw everything returns to normal. No explanation as to why it happened. It has happened MANY times to my girls. Crazy low white blood counts or liver counts etc. So we waited, repeated labs a little earlier than we normally would have and everything returns to normal. A couple of times we have held meds and retested, gotten normal results and resumed meds and went along our happy way.

Maybe I should submit that definition of blip to Websters?!
LOL you should
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Please forgive me for poking in, but I was hoping to help with a few ideas as to your concerns. I'm afraid there's not a whole lot that I can say that these wonderful parents have already said!

But, I was diagnosed at 18 even though most likely I had IBD since I was born. The majority of my meds have been 5ASA's although, there was a time that I was on Azathioprine and did well on it. For me, when I flare I do bleed from the backside, normally at that time it's diarrhea and or straight blood. But, sometimes even without an actual flare I might have some blood in my stool. A little blood off and on hasn't concerned my GI, but if there's a whole lot is when your iron level will drop.

I don't have any human children, by choice, but those of us with IBD are able to have little ones! But, one thing to remember is that when pregnant 1/3 get better, 1/3 get worse and 1/3 stay the same. For me, I would have been the 1/3 that got worse because there was a period where I had a horrible flare for 2 years. I'm not saying this will be the same for your daughter. It'd be a good thing to keep in touch with her doctor about this one.

However, I've done well with my IBD for the most part. It just takes time to get things figured out. Please feel free to message me if you have more questions. In the meantime, it sounds like you're doing great already!

Cross-stitch
 
Please forgive me for poking in, but I was hoping to help with a few ideas as to your concerns. I'm afraid there's not a whole lot that I can say that these wonderful parents have already said!

But, I was diagnosed at 18 even though most likely I had IBD since I was born. The majority of my meds have been 5ASA's although, there was a time that I was on Azathioprine and did well on it. For me, when I flare I do bleed from the backside, normally at that time it's diarrhea and or straight blood. But, sometimes even without an actual flare I might have some blood in my stool. A little blood off and on hasn't concerned my GI, but if there's a whole lot is when your iron level will drop.

I don't have any human children, by choice, but those of us with IBD are able to have little ones! But, one thing to remember is that when pregnant 1/3 get better, 1/3 get worse and 1/3 stay the same. For me, I would have been the 1/3 that got worse because there was a period where I had a horrible flare for 2 years. I'm not saying this will be the same for your daughter. It'd be a good thing to keep in touch with her doctor about this one.

However, I've done well with my IBD for the most part. It just takes time to get things figured out. Please feel free to message me if you have more questions. In the meantime, it sounds like you're doing great already!

Cross-stitch
Thank you so much
 
Do not worry too much. Wait till they do another set of blood tests in the next couple of weeks. Or ask them to repeat the test. As many of them say, it could just be "one of a thing". It did happen to my son too. He had elevated liver numbers twice consecutively and we even saw a liver specialist. We monitored him closely for the next 3 months and everything was fine at the end.

Calm down mommy and just wait. If still things are not improving, you already know what to do. Give it a month or so..
 
Do not worry too much. Wait till they do another set of blood tests in the next couple of weeks. Or ask them to repeat the test. As many of them say, it could just be "one of a thing". It did happen to my son too. He had elevated liver numbers twice consecutively and we even saw a liver specialist. We monitored him closely for the next 3 months and everything was fine at the end.

Calm down mommy and just wait. If still things are not improving, you already know what to do. Give it a month or so..
thank you
 
It is really up to your preference but honestly, if she has Crohn's 5 ASA's have the lowest success rate and by lowest we mean really, really low. I know they are still trying to decide if she has UC or Crohn's and are treating her as UC for now. 5 ASA's are much more successful at treating UC. However, your daughter did have mild active ileitis and disease activity in the small bowel would generally be Crohn's.

I'll be darned if your daughter doesn't sound a lot like my daughter O. Her problem area is her rectum. She does have little more disease in her colon than your daughter but we could usually get the colon behaving and when it does, the rectum and terminal ileum tend to be the spots that have ongoing disease.

Personally, since she is not symptomatic and suffering right now, I might go along with the trial of pulling the 5 ASA and see what happens with her labs. If restarting causes the labs to increase again and the GI presents biologics as an option I would go ahead and grab them. I would not stop at the mid level of immunosuppressants and wait that out.

P.S. why is everyone saying "mom". did you disclose you were a mom? For some reason I was thinking dad....lol!
 

Tesscorm

Moderator
Staff member
Yep, past panics over 'blips' here too. At one time, my son's liver numbers jumped. Had me panicked as his diagnosis was still a bit new (one year) and these results came from the last test with his ped GI as he was being transitioned to an adult GI (with a 3 months wait!). I panicked and contacted both ped and adult GIs saying they couldn't leave us hanging (really it was me, my son wasn't stressed! lol) with these results for three months! If I remember correctly, both their offices told me to relax and to just watch for any symptoms and, if there were any changes, one or the other would follow up . They may have ordered follow up blood tests?? But, in any event, it turned out to be nothing and all went back to normal with no intervention.

We've had lots of these over the years... in my son's case, they don't seem to be exact 'crohns' symptoms, he gets more EIMs (extra intestinal manifestation) type symptoms! We just recently had a few weeks of trying to figure out if he had adenovirus or reactive arthritis... either of which may or may not have been facilitated by being on remicade or may just have been something he caught... after multiple doctor visits, GI visit, lots of tests, 2-3 rounds of antibiotics, we never did get a definitive answer... and, all is good now.

There's no question it's scary at the beginning. When you've been around a bit, you become more comfortable in watching and waiting to see if it's a blip 'again', when you're new, it's so easy to worry that this is a progression of the illness. What helped me the most was coming here, to the forum and sharing my concerns. The members here are awesome and have incredible knowledge. Knowing what you may be facing, what treatment options there are, what other parents/members have experienced will help you regain control of the situation and helps manage your worry.
 

Maya142

Moderator
Staff member
I honestly would push for biologics. Just based on the research - MANY children's hospitals, including the one we used to go to, which is in the top 3 in the country, are now using the top down approach. The reasoning is to get the disease under control quickly, to prevent damage from occurring to give kids the best quality of life they can have.

The step up approach can be tough, because you have to fail meds to get to a higher class of meds. So that means your child could be stuck trying 5 ASAs for months, then Imuran or 6MP for months and/or MTX for several months. They may be lucky and respond to their first or second med. But if they're not, then you have one miserable child for the better part of a year. And to be honest, we had WAY more side effects with immunomodulators than with biologics. Both my girls have had a tough time with MTX - nausea, fatigue, headaches, dizziness and vomiting for the younger one. My older daughter was able to decrease her MTX dose and has done pretty well on the lower dose. My younger daughter tried every trick her GI and rheumatologist could think of, but was SO miserable on MTX that we stopped it.

As for Imuran/6MP, they can be hard on the liver and pancreas, so they're probably not a good idea for your kiddo. And they do come with a higher cancer risk - both a higher risk of non-Hodgkins Lymphoma and then a higher risk of a very rare type of lymphoma - hepatosplenic T-cell lymphoma which is often fatal and tends to affect adolescents/young adults - often males, but also females sometimes. It is very, very rare but it's a risk. It also increases the likelihood of non-melanoma skin cancer.

My daughter has been on a LOT of meds and out of all of them, I was scared most by Imuran. She actually had a hard time with Imuran side effects too - she got frequent infections, which is not at all normal for her. She needed antibiotics like 6 times that year! We finally stopped it after she got staph infection in her throat (which is unusual) and the antibiotics we used to treat that infection caused C. Diff, which caused a flare, which led to months of steroids and so on...

It's the only med that has caused that issue for her - she has very aggressive arthritis and is currently on TWO biologics and two immunomodulators (used for arthritis, not the same ones used for IBD) and is not as immunosuppressed as she was on Imuran - no infections so far, thankfully.

So because of all that, I would push for biologics. Our GI treated my daughter aggressively - she was put on Remicade and MTX after diagnosis. Her Crohn's improved a LOT in 8 months - when we re-scoped, ALL the ulcers in her colon were gone and it looked pristine. Her small bowel had very mild inflammation but much improved from the scopes at diagnosis. Her Crohn's has remained mild and well-controlled and I truly think it was because we treated her aggressively.

Both my girls have been on biologics for 9-10 years and neither has had side effects.
 

my little penguin

Moderator
Staff member
I would A ) wait to see if you need to even switch
You may not
B) see what you Gi suggests
They don’t put kids on biologics for mild ibd
They just don’t
Considering she currently doesn’t have anything else going on

Ds did horrible with injectable methotrexate but is fine with mtx in the pill form up to 20 mg
Other kids are fine woth the shot but not the pills
It’s very individualized

Your kiddo does not currently have any other diseases or extra intestinal manifestations that need controlled by other meds including biologics

That’s a good thing

See what the bloodwork says
See what Gi suggests since they are the experts in your kiddo
And then go from there

Ds is only on biologic because he developed vasculitus (EIM ) whole on mtx only
He has very mild crohns
Good luck
 

Maya142

Moderator
Staff member
They don't put kids on biologics for VERY mild IBD as a first medication - that's true. But if she's tried and probably failed 5 ASA's and since Imuran and 6MP are not good options, they might have you try MTX or they may have you try a biologic. It does depend on how mild her Crohn's is, if she has symptoms, if she has growth or weight loss issues, how labs look and many other factors.

My daughter's IBD was considered mild - her scopes showed ulcers in her rectum and colon - not a whole lot but definite ulcers. She had a red and inflamed looking terminal ileum that bled when biopsied. She also had some inflammation in her stomach. Every single biopsy taken showed inflammation - both acute and chronic, and the biopsies taken in her small bowel showed granulomas. Her symptoms were abdominal pain, some weight loss and constipation - nothing terrible.

Her GI was considering just MTX and/or biologics, but since she was on a biologic anyway for her arthritis, her GI thought it would be best to switch her to a biologic that worked for both her IBD and arthritis. Her GI thought a biologic would work fastest and prevent permanent damage from occurring.

I do agree with My little penguin that you shouldn't push biologics - doctors tend not to like parents playing doctor. But I would certainly ask about the rationale behind using whichever drug your GI chooses and I'd even ask about the top down vs. step up method. Biologics are not usually considered a last resort any more and doctors no longer "save" them for when the disease has become severe - instead, they try to prevent the disease from becoming severe in the first place.

At our hospital, our GI said they were using the top down method more and more and they were using immunomodulators less and less.

Also, if you're uncomfortable with their treatment recommendations, getting a second opinion can be a HUGE help. Cincinnati Children's is a great hospital and so is CHOP in Philly. Both of them have big IBD programs and have lots of experience with all kinds of IBD.
 
Her latest blood showed her Lipase is up over 2700 so they are having us stop the enema and redo bloodwork in a week and a half so see if that level comes down. Dr. is assuming the Lipase level is going up due to the Pentasa she has been on. Looking at the history of bloodwork. It gradually has gone up since she started the meds. She also has a Pancreas scan - MRCP scheduled for this Tuesday just to check if anything in there is causing the Lipase levels to go up. She had an MRE about a month ago and didn't see anything, but the MRCP will look deeper. If stoping the Pentasa helps, then they said they will put her back on it to see if levels go back up again. if it does we will look into another med. Dr. said she didn't want to go to a Biologic if she didn't have to, but the more I read, might not be a bad thing. Considering her Lipase is so high, she has no pain in her pancreas at all.

I want to treat her aggressively so it prevents it from getting worse in the future but also not sure if we should jump to that extreme since she has had no pain with her mild UC/Crohns.

I also think about the side effects Biologics and correct me if im wrong, but seem to be minimal and serious side effects are rare.
 
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Wait. I am confused. Didn't you already stop the 5ASA's back on September 30th? Those were oral meds? And after that she still had elevated Lipase? So now they are having you stop the rectal as well?

As to biologics, I think I may have said this before, yes, there is a theory of top down, however, it is top down for the right patients. They do not like to jump to top down for every pediatric patient and especially not the mild ones. I say this only to reinforce your confidence in your GI. She is not being irresponsible. Most people here are familiar with top down and had our kids put on biologics as first line because they had more severe disease and about 10 years ago (before the top down theory) all patients were started on 5ASA's or immunomodulators and then worked their way up. It was right around the time that our kids were dx'd that the top down for moderate to severe disease and top down for those patients was a proven strategy. There is a lot of discussion in gastro circles now of really trying to manage drug exposure and cost. I am actually seeing much discussion and research about de-escalating drugs.

All this said, I personally am more comfortable with the risk profile and side effects of biologics over immunomodulators. However, many GI's will ask you to take an immunomodulator at the same time as starting a biologic to help prevent antibodies. So, in that case, my theory would be, why not try the immunomodultor (Methotrexate) first (since you have to accept those risks and side effects anyway) and see if it works and if it does great. If not, then escalate up to the biologic. I imagine you could ask to go to a Remicade or Humira without the immunomodulator but then you are risking antibody formation and having to stop that drug because fit and you have your best shot at success with your first biologic so I would do everything in my power to make sure I gave it everything I had.

I hope this makes sense. It's early here and I haven't had my coffee. Ask away and I will clarify.
 
Wait. I am confused. Didn't you already stop the 5ASA's back on September 30th? Those were oral meds? And after that she still had elevated Lipase? So now they are having you stop the rectal as well?

As to biologics, I think I may have said this before, yes, there is a theory of top down, however, it is top down for the right patients. They do not like to jump to top down for every pediatric patient and especially not the mild ones. I say this only to reinforce your confidence in your GI. She is not being irresponsible. Most people here are familiar with top down and had our kids put on biologics as first line because they had more severe disease and about 10 years ago (before the top down theory) all patients were started on 5ASA's or immunomodulators and then worked their way up. It was right around the time that our kids were dx'd that the top down for moderate to severe disease and top down for those patients was a proven strategy. There is a lot of discussion in gastro circles now of really trying to manage drug exposure and cost. I am actually seeing much discussion and research about de-escalating drugs.

All this said, I personally am more comfortable with the risk profile and side effects of biologics over immunomodulators. However, many GI's will ask you to take an immunomodulator at the same time as starting a biologic to help prevent antibodies. So, in that case, my theory would be, why not try the immunomodultor (Methotrexate) first (since you have to accept those risks and side effects anyway) and see if it works and if it does great. If not, then escalate up to the biologic. I imagine you could ask to go to a Remicade or Humira without the immunomodulator but then you are risking antibody formation and having to stop that drug because fit and you have your best shot at success with your first biologic so I would do everything in my power to make sure I gave it everything I had.

I hope this makes sense. It's early here and I haven't had my coffee. Ask away and I will clarify.
It does make sense and thank you. yes the 5ASA oral med was stopped on Sept 30th because of high Lipase levels but the rectal meds were not stopped. Her last blood work about a week ago showed the Lipase levels doubled so Dr had her stop the rectal meds as well. We just got back from her MRCP of her pancreas to make sure nothing is going on in there. Dr thinks the high Lipase levels are due to the meds but just want to make sure. The Dr. did mention the med called Sulfasalazine if the Pentasa continues to give her high Lipase levels.

The Dr. was surprised with that she has no pain even though her Lipase level is above 2000.
 
Hmmm. I don't know how much of the 5 ASA's are absorbed rectally but it seems to me that a continued increase in Lipase is not a blip and if the scan comes out clear I would be willing to assume it is the meds and not be inclined to retry. But they are the docs with the real degrees and years of experience with hundreds of patients so.......

Sulfasalazine is another 5 ASA. Not sure about it's propensity to cause pancreatitis but sounds like your GI is being ultra conservative. Could be a good thing. I just hope that these delays do not cause her IBD to get worse. When is her next fecal cal protection test scheduled? I would want to watch GI inflammation closely.
 

Maya142

Moderator
Staff member
Sulfasalazine may cause the same issues - it's in the same family as 5 ASA drugs.

All this said, I personally am more comfortable with the risk profile and side effects of biologics over immunomodulators. However, many GI's will ask you to take an immunomodulator at the same time as starting a biologic to help prevent antibodies. So, in that case, my theory would be, why not try the immunomodultor (Methotrexate) first (since you have to accept those risks and side effects anyway) and see if it works and if it does great. If not, then escalate up to the biologic. I imagine you could ask to go to a Remicade or Humira without the immunomodulator but then you are risking antibody formation and having to stop that drug because fit and you have your best shot at success with your first biologic so I would do everything in my power to make sure I gave it everything I had.
I agree with crohnsinct - personally, I am much more comfortable with biologics. Mostly due to the side effects associated with Imuran/6MP and with the cancer risk with them. However, MTX is safer (than Imuran/6MP) and a good option but both my girls had a much easier time with biologics than MTX. That said, my older daughter is on MTX and my younger one is on two immunomodulators used in arthritis but not for IBD. So it's not like we're not using those drugs - we are and often kids have NO side effects or mild side effects with MTX. There is a subset of kids who do have worse side effects, but those include severe nausea, vomiting, mouth sores - all things that stop immediately after the drug is stopped. And honestly, MTX is used as a first-line drug in the arthritis world, and I would say we know more kids on it than not on it! And most of those kids have mild side effects - like mild nausea or mild fatigue - if they have any side effects at all. There are plenty of tips and tricks to deal with side effects too - upping folic acid, Zofran for nausea.

Both my girls have been on multiple biologics with no side effects at all. But they are expensive drugs and often insurance won't cover them unless your GI can justify it - either severe disease or by failing lower level drugs. I think in a perfect world, they'd be cheaper and therefore easier to use, but so far they are costly and so insurance companies may refuse to pay for them if you haven't tried immunomodulators, especially if your daughter has mild disease.

My kiddo also had relatively mild disease - ulcers in her colon and red and friable TI (bled when biopsied) and every single biopsy showed acute and chronic inflammation and some showed granulomas. But not huge or terrible ulcers or visually severe inflammation or a lot of bleeding. Her use of biologics was really justified by severe arthritis and her GI did not want her disease to get any worse, considering she already had pretty severe arthritis.

I am surprised your GI is suggesting Sulfasalazine when her lipase is so, so high. I think honestly the best option for you right now is MTX and if that does not control disease or causes pancreatitis (though I haven't heard of it causing pancreatitis so far), then a biologic.
 
Hmmm. I don't know how much of the 5 ASA's are absorbed rectally but it seems to me that a continued increase in Lipase is not a blip and if the scan comes out clear I would be willing to assume it is the meds and not be inclined to retry. But they are the docs with the real degrees and years of experience with hundreds of patients so.......

Sulfasalazine is another 5 ASA. Not sure about it's propensity to cause pancreatitis but sounds like your GI is being ultra conservative. Could be a good thing. I just hope that these delays do not cause her IBD to get worse. When is her next fecal cal protection test scheduled? I would want to watch GI inflammation closely.
She is due for the fecal cal protection test any day now.
 
Sulfasalazine may cause the same issues - it's in the same family as 5 ASA drugs.



I agree with crohnsinct - personally, I am much more comfortable with biologics. Mostly due to the side effects associated with Imuran/6MP and with the cancer risk with them. However, MTX is safer (than Imuran/6MP) and a good option but both my girls had a much easier time with biologics than MTX. That said, my older daughter is on MTX and my younger one is on two immunomodulators used in arthritis but not for IBD. So it's not like we're not using those drugs - we are and often kids have NO side effects or mild side effects with MTX. There is a subset of kids who do have worse side effects, but those include severe nausea, vomiting, mouth sores - all things that stop immediately after the drug is stopped. And honestly, MTX is used as a first-line drug in the arthritis world, and I would say we know more kids on it than not on it! And most of those kids have mild side effects - like mild nausea or mild fatigue - if they have any side effects at all. There are plenty of tips and tricks to deal with side effects too - upping folic acid, Zofran for nausea.

Both my girls have been on multiple biologics with no side effects at all. But they are expensive drugs and often insurance won't cover them unless your GI can justify it - either severe disease or by failing lower level drugs. I think in a perfect world, they'd be cheaper and therefore easier to use, but so far they are costly and so insurance companies may refuse to pay for them if you haven't tried immunomodulators, especially if your daughter has mild disease.

My kiddo also had relatively mild disease - ulcers in her colon and red and friable TI (bled when biopsied) and every single biopsy showed acute and chronic inflammation and some showed granulomas. But not huge or terrible ulcers or visually severe inflammation or a lot of bleeding. Her use of biologics was really justified by severe arthritis and her GI did not want her disease to get any worse, considering she already had pretty severe arthritis.

I am surprised your GI is suggesting Sulfasalazine when her lipase is so, so high. I think honestly the best option for you right now is MTX and if that does not control disease or causes pancreatitis (though I haven't heard of it causing pancreatitis so far), then a biologic.
Thank you so much for the info. It means a lot
 
Update, daughter had the CT scan back in AUG which was normal. This was before her Lipase levels were elevated, the CT scan was just to make sure there wasn't any inflammation in the pancreas and surrounding areas. Since her Lipase levels have risen to over 2000. So she had a MRCP down last week. The results came back normal. So we are leaning towards the Pantasa causing the high Lipase levels. Whats odd is she has no pain at all. So with the no pain and the MRCP being normal. Its definitely nor pancreatitis. She is off all meds for now to see if her Lipase levels drop and is due for bloodwork this week.
 
Oh i forgot to mention, she has had a few minor nosebleeds in the past 3 days. Not sure if this is normal with IBD? We do live in PA so the air is getting colder and dryer this time of year so not sure if that has anything to do with it.
 
No, not really. O had an issue with nose bleeds and we ran it by the GI and he told us not related. However, she did have low WBC's and he Sid it could be due to that. We had it checked out and not related. Just run of the mill nose bleeds. Come to think of it, it was around thistle of year also.
 

my little penguin

Moderator
Staff member
Nosebleeds here
No issue per Gi either
Glad the scan was clean
Assume it was the meds so hopefully they can get a new med for her soon
That is not linked to increase pancreas numbers
 
Update: As you know her MRE and CT scan were normal. However her recent bloodwork checking her Lipase levels have shown them to go up even more to over 3000. I am lost as to what can be causing this. She has been off the oral Pantasa for over 2 weeks and the rectal for 12 days. Does anyone have any info or knowledge what can cause high Lipase levels where she is in no pain, no symptoms and pancreas and all surrounding organs are normal.?
 
We talked to Dr. Kim at Childrens Hospital of Pittsburgh today because of the high Lipase levels. Celiac was filled out as she was tested for that when they did the scopes back in July. Dr. also said...

“I spoke to my colleague, who is the expert and director of our Pancreas Center. We wonder given the lack of symptoms, complete normal imaging, whether she actually has macrolipasemia (rather than acute pancreatitis). If this is the case, I would be comfortable with restarting the mesalamine but continuing close monitoring (rechecking the lipase in a few weeks).”

Those of you wondering, macrolipasemia is basically from what the Dr says, where lipase levels can rise for no reason. Daughter could have had this going on way before she was even diagnosed with IBD, but just never knew it since she never had blood work done testing for lipase until the IBD diagnoses.
 
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my little penguin

Moderator
Staff member
Can you call cchmc chop or bch for a second opinion ?
given they high levels and they don’t know why
I would want a fresh set of eyes outside of your current place agreeing before putting back on meds known to raise levels
 

Maya142

Moderator
Staff member
I would see a GI at a different hospital if you can. I know CHOP is quite a drive, but they're great. Cincinnati Children's is also a great option. With something so rare, you want to be sure that's truly what she has.
 
Thanks again for all the support. We are going to talk to the GI/Pancreas specialist in about 4 weeks and go from there. We will see what other tests we can do to try and find out whats causing the levels to jump. We are also starting her on a gluten free diet as it doesn't hurt to try that and see if that helps.
 
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