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Nolan11 said:
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 ?
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I had pancreatitis years ago , it almost killed me really did a number on my kidneys and liver . I had no idea what had caused it until just last year when I was diagnosed with crohns . It’s scary but also showed me how to go on my liquid diets to calm my gut and get me back on track. The good thing is she is young , I do hope all goes well
 
This is great news! Something to watch for. My son was doing well on Remicade at the initial stages, but he soon was metabolising it too quickly and had to get the dose increased. So once you get to the every 8 weeks and if you notice your child is getting symptoms before the next infusion app't, make sure to let your GI know. I didn't find this forum until after I experienced a lot of grief about this. My son right off the top needed his dosage adjusted. Everyone is different so this may not happen, but it is common enough, so don't worry if it happens - it's just a matter of adjusting dosages or frequency or both. Glad that things are looking better. :)
 
Jo-mom said:
This is great news! Something to watch for. My son was doing well on Remicade at the initial stages, but he soon was metabolising it too quickly and had to get the dose increased. So once you get to the every 8 weeks and if you notice your child is getting symptoms before the next infusion app't, make sure to let your GI know. I didn't find this forum until after I experienced a lot of grief about this. My son right off the top needed his dosage adjusted. Everyone is different so this may not happen, but it is common enough, so don't worry if it happens - it's just a matter of adjusting dosages or frequency or both. Glad that things are looking better. :)
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Great, thanks for the info, how long has your son been on Remicade?
 
Sorry I am very late to this. Haven’t been on the forum for yonks. 😬

So fab to hear things are going well. 😊

Re the pancreatitis. Not sure if you ever received a definitive answer from the docs on that but it can be an EIM (Extra Intestinal Manifestation) of IBD, more often with Crohn’s. All that means is that it is an area where inflammation can pop up outside of the bowel. If it does occur it often precedes a diagnosis. In our experience it led to some pretty wild and fluctuating Amylase & Lipase readings, through the roof one day, normal the next.
 
OK, so A had her 3rd remicade infusion yesterday, it was the 4 week mark. She also saw her GI Dr. before the remicade and all has been going good. We got home that evening and A had blood in her stool. She ending up going again about 2 hours later and there was no blood. We contacted her GI Dr. and she wants to see what the remicade levels are from her blood work which takes about 1 week to get back.

My question is, has anyone had this happen? Could it be a sign of the remicade levels being low? Could it also be a sign that the remicade is no longer working? While were were at her appointment, they scheduled us for 8 weeks from now to get her next infusion. At this point this is looking unlikely if the blood is going to come back after just 4 weeks. So another question is, could she still go 6 or 8 weeks in-between if the remicade levels are raised?
 
She just finished her loading dose .
Sometimes kids get a one of with blood
They would have done regular bloodwork
As well as levels so wait for those
They may decrease Time between infusions
Or just add a boost (een ,steriods etc...) until remicade has more time to kick in fully

given it’s one of ....
Doc will advise by numbers

Ds who is not a bleeder
Occasionally has a blip
One to two days of blood on a bm or two
Nothing after or before
Happens once every few years
 
So you are saying that the day of the infusion can sometimes cause blood in stool? If so doesn't that show possible inflammation and not in remission ?
 
No I am saying Crohn’s /UC kids sometimes have a “blip “ of blood every once and a great while and it disappears as quickly as you call the Gi never to be seen again for months or years
Sometimes blood has nothing to do with the infusion
Sometimes it does
This disease is very long
So in the beginning it’s hard
Until her pattern becomes more apparent
It may be her remicade levels dropped
It may be she needs help reducing the inflammation until remicade fully kicks in
Or sometimes it’s because “it’s Tuesday “ no real reason why

the Gi is testing and looking for the answer
The Gi will observe as will you
To determine her particular pattern
1 bm with blood we no longer worry for ds
Even a spot or two on two days in a row
Because that’s his pattern that happens because it’s Tuesday once every other year for no reason and goes away
His scopes are clean and bloodwork /fecal cal is always good

it’s all about patterns
So for now the doc will gather info
To learn hers
 
She is only on her third infusion so really not in remission yet. She is healing. Healing takes time. If the amount of bleeding is decreasing this is a good sign.

My daughter is a bleeder. When her therapy was switched once her bleeding actually increased and our GI explained that sometimes with healing it might look like an increase in bleeding but it is really just the old sores sloughing off.

If it was a smaller amount and it was just that once, I would sit tight and watch and wait and see.

The day of infusion does not cause blood.

In order to consider the Remicade is "no longer working" or intervals need to be shortened you have to look at all symptoms and la values. Did all her symptoms kick up or was it just that bit of blood, cal pro, blood labs etc. I think once it has been a few days and you see what is happening with symptoms and start getting cal pro and blood labs back you will have a much better idea of what is going on.

If Remicade levels are good they will likely keep her at 8 weeks but honestly very few kids are able to go to 8 weeks. Especially at the beginning. Active inflammation sops up the drug a lot more than when they are in remission. It is pretty typical to need higher doses, more frequently while they are healing and as they heal you can start to decrease dose or increase frequency. So my guess is you will probably not move to 8 weeks right away but it is possible.
 
crohnsinct said:
She is only on her third infusion so really not in remission yet. She is healing. Healing takes time. If the amount of bleeding is decreasing this is a good sign.

My daughter is a bleeder. When her therapy was switched once her bleeding actually increased and our GI explained that sometimes with healing it might look like an increase in bleeding but it is really just the old sores sloughing off.

If it was a smaller amount and it was just that once, I would sit tight and watch and wait and see.

The day of infusion does not cause blood.

In order to consider the Remicade is "no longer working" or intervals need to be shortened you have to look at all symptoms and la values. Did all her symptoms kick up or was it just that bit of blood, cal pro, blood labs etc. I think once it has been a few days and you see what is happening with symptoms and start getting cal pro and blood labs back you will have a much better idea of what is going on.

If Remicade levels are good they will likely keep her at 8 weeks but honestly very few kids are able to go to 8 weeks. Especially at the beginning. Active inflammation sops up the drug a lot more than when they are in remission. It is pretty typical to need higher doses, more frequently while they are healing and as they heal you can start to decrease dose or increase frequency. So my guess is you will probably not move to 8 weeks right away but it is possible.
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She had not had any symptoms other than blood in stool since she's had UC diagnosed 18 months ago. When she started Remicade 6 weeks ago, the blood she was having in her stool went away right away. Thats why I was concerned seeing there was blood in her stool last night. But weird is she pooped again about 2 hours later and no blood. She did say there wasn't much blood in her stool though.
 
Oh. I thought I read she had diarrhea which with UC is a hallmark symptom. If the blood she saw was just a little it could be a fissure. Also not sure how old she is and if she started menstruating yet but sometimes little bits of blood could be a sign that you are about to start. So basically, it could be a few things.

Incidentally, my daughter who has been in a 5 year flare was doing really well for three weeks and just last week saw some blood once on two separate days. With it came some increased frequency and looser stools. It went away. In time you learn to wait and watch.
 
crohnsinct said:
Oh. I thought I read she had diarrhea which with UC is a hallmark symptom. If the blood she saw was just a little it could be a fissure. Also not sure how old she is and if she started menstruating yet but sometimes little bits of blood could be a sign that you are about to start. So basically, it could be a few things.

Incidentally, my daughter who has been in a 5 year flare was doing really well for three weeks and just last week saw some blood once on two separate days. With it came some increased frequency and looser stools. It went away. In time you learn to wait and watch.
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Sorry yes she did have diarrhea in the beginning, she is 14 years old and has started menstruating about a year ago, but its not her time of the month so we can rule that out.
 
I didn't even think about this until my wife brought it to my attention. "A" had two vaccine shots on the same day as her Remicade, influenza virus vaccine and the pneumococcal 13-valent vaccine. Could these vaccines cause her to go into a flare which would explain the blood in her stool that same day?
 
No
Vaccines would not cause a flare
Ds has had many vaccines over the years
No issues
It isn’t a flare of it only happened once
Flare is multiple days
Remission takes time -months to achieve
Please wait for the results from the Gi office
Especially if it hasn’t happened again
 
my little penguin said:
No
Vaccines would not cause a flare
Ds has had many vaccines over the years
No issues
It isn’t a flare of it only happened once
Flare is multiple days
Remission takes time -months to achieve
Please wait for the results from the Gi office
Especially if it hasn’t happened again
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She did have blood in stool last night too. :-(
 
Second thing to note
Please talk to your Gi
Ours has advise we try to give immunizations as far away from the infusions or injection of biologics
So if Ds gets his Stelara on oct 1st abd due oct 29th
We aim for the immunization (flu or otherwise) half way in between oct 14th so
Otherwise the biolgics crushes down the Immune system and the vaccines are not as effective .
 
Let the Gi know the blood is continuing
She may need a bridge therapy (steriods ) until remicade has had a chance to catch up with the inflammation
 
my little penguin said:
Let the Gi know the blood is continuing
She may need a bridge therapy (steriods ) until remicade has had a chance to catch up with the inflammation
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Thank you, yes her GI is aware of the issue and just awaiting the remicade levels to come back which should be early next week.
 
Vaccines wouldn't necessarily cause a flare.

How much blood?

It still doesn't sound like an all out flare but good the GI knows and you are keeping an eye on things. Unless she is bleeding a lot and consistently. It could be just a bit of breakthrough bleeding or like was said earlier, hemorrhoids, fissures, just too early in treatment etc.

Did they take a fecal calprotectin sample at infusion. That test is usually pretty reliable for distal disease.

I think at the beginning she was using a rectal therapy. It might be time for that again just until the Remicade gets to a point where it can take over fully. My daughter who is a bleeder uses rectal therapy every night.
 
crohnsinct said:
Vaccines wouldn't necessarily cause a flare.

How much blood?

It still doesn't sound like an all out flare but good the GI knows and you are keeping an eye on things. Unless she is bleeding a lot and consistently. It could be just a bit of breakthrough bleeding or like was said earlier, hemorrhoids, fissures, just too early in treatment etc.

Did they take a fecal calprotectin sample at infusion. That test is usually pretty reliable for distal disease.

I think at the beginning she was using a rectal therapy. It might be time for that again just until the Remicade gets to a point where it can take over fully. My daughter who is a bleeder uses rectal therapy every night.
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She is not bleeding a bunch, not like its just uncontrollably coming out, just shows up in stool a little. She was on a rectal therapy before remicade, but was taken off it when remicade started. Does your daughter take a biologic as well ? Fro what I remember she does right ?
 
Yes. My daughter is on two biologics, budesonide, a cocktail of three antibiotics and proctofoam to keep her bleeding in check.

Over the past week my daughter has seen blood twice.

Has she also seen mucus?
 
crohnsinct said:
Yes. My daughter is on two biologics, budesonide, a cocktail of three antibiotics and proctofoam to keep her bleeding in check.

Over the past week my daughter has seen blood twice.

Has she also seen mucus?
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Does bleeding indicate a flare or inflammation? Sorry still learning what these symptoms all mean. I think I read somewhere that their child will have blood every once in awhile but scopes show normal and no inflammation.

She has not seen any mucus, at least she didn't mention it.
 
Bleeding is generally a sign of inflammation. It could mean you are heading into a flare but only if it gets worse and only if you were already in remission. Your daughter is still at the beginning of her Remicade treatment so it will take a little while for things to be totally normal. Likely this little bit of blood is because she came off her old treatment and is starting a new one and the new one hasn't built to its maximum effectiveness.So not really a flare as much as the Remicade isn't quite ready to hold things yet.

Don't forget it could also be the old sores sloughing off.

I have to say if she has UC, I would think if she was really flaring you would see a lot of mucus, an increase in frequency and more liquid stooling.

If she is just dealing with the bits of blood, I personally would just add. back in the rectal therapy for a while and see if that helps. It seems like she may not even need it every night as the bleeding is only happening about once a week or so. Of course you would have to ask your doctor about this as I am just a mom sharing our experience.

If she is feeling good and doesn't start sliding too much I think your are in a good place to wait for the lab results. Did they take a cal pro test?

Do you still see Dr. Kim at Pitt? She is very knowledgeable and I think you can take your cues from her.
 
crohnsinct said:
Bleeding is generally a sign of inflammation. It could mean you are heading into a flare but only if it gets worse and only if you were already in remission. Your daughter is still at the beginning of her Remicade treatment so it will take a little while for things to be totally normal. Likely this little bit of blood is because she came off her old treatment and is starting a new one and the new one hasn't built to its maximum effectiveness.So not really a flare as much as the Remicade isn't quite ready to hold things yet.

Don't forget it could also be the old sores sloughing off.

I have to say if she has UC, I would think if she was really flaring you would see a lot of mucus, an increase in frequency and more liquid stooling.

If she is just dealing with the bits of blood, I personally would just add. back in the rectal therapy for a while and see if that helps. It seems like she may not even need it every night as the bleeding is only happening about once a week or so. Of course you would have to ask your doctor about this as I am just a mom sharing our experience.

If she is feeling good and doesn't start sliding too much I think your are in a good place to wait for the lab results. Did they take a cal pro test?

Do you still see Dr. Kim at Pitt? She is very knowledgeable and I think you can take your cues from her.
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Thanks again for the info. Yes we see Dr Kim at Pitt. She is great and is scheduling a cal pro and maybe test for C-Diff just in case.
 
Hello, its been a little while since I last posted, we do ask our 14 yrd daughter every once in awhile if there is blood in her stool. As she seems to not tell us when she should. Its been about 7 weeks since her last Remicade infusion. She had the first one week 0, 2nd one at week 2, 3rd one at week 4 and now scheduled for the 8 week one in about a week. I asked her how her poop was and if there was any blood, she said the poop looks normal formed but there is blood sometimes. Her remicade levels were excellent back on Oct 17th which is when we got the results back from her 3rd remicade infusion. Is this something we should be concerned about with the blood? I know blood is not good but not sure if its just taking awhile for the remicade to work? Or maybe she needs infusions closer together then 8 weeks? I asked her when she started noticing the blood again and she things maybe 3 weeks ago. So that would have been at about 4 weeks after her last infusion. As I said her remicade levels are great. Also if remicade levels are where they are supposed to be, does that guarantee it to work? Meaning remission? Can remicade levels be great but still not work?
 
There are absolutely no guarantees for any medicine in Crohn’s disease
You can have perfect levels of remicade and still flare
You can have lower levels and it can still work .
You need to let the Gi know she has been having blood. They need to know how often , how much (toilet paper only , coating the stool or bloody water in the toilet ) , they need to know how many days a week , Bristol number (Bristol stool chart )
Toronto sick kids has a very simple ibd app for kids to put on their phone
Or you can use a color coding system
Blue line for ... yellow line for ....
Etc so only you abd your dd know what the secret code means ...

remicade may need more time
May need higher frequency (every x weeks or higher dose or both )
Ds had perfect levels but needed higher frequency/dose (7.5 mg/kg every 6 weeks )

talk to your child’s Gi
 
Hello, its been awhile since I posted. A has been on Remicade for about 5 months now. She has had no side effects. Her Stool Calprotectin was 1870 before remicade, she has had occasional blood in her stool since remicade. Her Stool Calprotectin test that was just done last week shows a score of 203. Her GI said its slightly above normal but a huge improvement from the 1870. We are still unsure of what the blood is from, inflammation or fissure. The blood is not there all the time. I was looking to see if any of you have any advise or opinions on this? He Dr said for us to continue to monitor her of course. I just hope the remicade is working which seems to be since the Stool Calprotectin is way down from below. Thoughts ?
 
That's great! Neither of my girls have ever been able to get below 200 and stay there for very long, even when they feel great and are clinically in remission. While 200 is slightly above normal I would still celebrate that. She might get down further yet!

The blood: is it bright red or more of a maroon color? Is it just on toilet paper or does it also drip into the toilet? Is it mixed in with he stool or just on top? Is she having solid stools or still mush/liquid? How much blood? a drop? Teaspoon? Tablespoon? All blood? Is there also mucus?

Answers to the above questions will usually let you know if there is cause for worry.

Our GI has told us that sometimes there will be continued appearances of blood because it is the old layers sloughing off and they had erosions and ulcers so you will see some of that blood. The important thing is that it is slowing and getting less.

Did she have rectal disease? Sorry I can't remember. The rectum is a bear to try to get to heal. It takes a long time and is very finicky. Sometimes you need a boost of steroid suppositories or a rectal foam to completely stop the bleeding.
 
crohnsinct said:
That's great! Neither of my girls have ever been able to get below 200 and stay there for very long, even when they feel great and are clinically in remission. While 200 is slightly above normal I would still celebrate that. She might get down further yet!

The blood: is it bright red or more of a maroon color? Is it just on toilet paper or does it also drip into the toilet? Is it mixed in with he stool or just on top? Is she having solid stools or still mush/liquid? How much blood? a drop? Teaspoon? Tablespoon? All blood? Is there also mucus?

Answers to the above questions will usually let you know if there is cause for worry.

Our GI has told us that sometimes there will be continued appearances of blood because it is the old layers sloughing off and they had erosions and ulcers so you will see some of that blood. The important thing is that it is slowing and getting less.

Did she have rectal disease? Sorry I can't remember. The rectum is a bear to try to get to heal. It takes a long time and is very finicky. Sometimes you need a boost of steroid suppositories or a rectal foam to completely stop the bleeding.
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Thank you as always. From what we have gathered...

bright red or more of a maroon color? - Bright Red
Is it just on toilet paper or does it also drip into the toilet? - Just on paper
Is it mixed in with he stool or just on top? - Just on top we think
Is she having solid stools or still mush/liquid? - Solid/Normal
How much blood? a drop? Teaspoon? Tablespoon? All blood? - Not really sure, she says just a little
Is there also mucus? - None that we can see.
 
Those are all very encouraging answers! They are more indicative of fissures. I think you can relax for now and just ask her to let you know if there is an uptick.

But just a mom of a bleeder and not a doc so take my opinion for what it is worth;)
 
Wanted to add that sometimes if my daughter is having trouble deciphering what consistency is or how much blood there is (when it hits the water it looks much worse then it really is) or whether or not mucus is present, she will use a hat and then look and access the situation. It really helps determine how much blood there is. I know it sounds less than fun but if you are every really concerned and feel the need to quantify things it helps. We order hats by the dozens around here. We also try to save the planet and clean them to;)
 
crohnsinct said:
Wanted to add that sometimes if my daughter is having trouble deciphering what consistency is or how much blood there is (when it hits the water it looks much worse then it really is) or whether or not mucus is present, she will use a hat and then look and access the situation. It really helps determine how much blood there is. I know it sounds less than fun but if you are every really concerned and feel the need to quantify things it helps. We order hats by the dozens around here. We also try to save the planet and clean them to;)
Click to expand...

Thank you again for the info. :)
 
Hello, just a few questions to see if anyone has had this happen? A, had her 6th infusion yesterday and they do routine bloodwork every time. He C-Reactive Protein came back high at 1.93 mg/dL (High) - Reference Range:0.06 mg/dL - 0.81 mg/dL.

Her stool calprotectin she had done about a month ago was just above normal at 202 and Dr was happy with that since the last one was 1830 back in Aug 2020. Obviously we are concerned about the C-Reactive Protein being elevated. Dr Kim wants to repeat Bloodwork next week and do scopes this spring to see how the Remicade has been responding.

Has anyone else dealt with high C-Reactive Protein and was it a concern? Is this a good sign of inflammation? Dr. Kim says it does not necessarily mean there is inflammation. She also asked if she has been sick with any Virus that could cause this to go up and she has not been sick at all, at least not that we are aware of.
 
Crp is quick to go up (think 24-48 hours ) not necessarily for crohns
Sed rate is response on longer (1-2 weeks )
Was Sed rate ok ?
Any other numbers off ?
Ds Sed rate /crp went up high (68 Sed rate -normal 0-20 ) once - turns out it was an ear infection turning into mastoiditis.
Abx fixed it and all numbers were normal afterwards
Other time was inflammation of his arthritis (Stelara hadn’t kicked in all the way yet ..) once it did numbers were normal
But he had obvious signs that his arthritis was flaring

one bloodwork is just one data point
Two of the same issue is just a line between two points
If it’s repeated a third time then and only then is it a trend

as a parent hard not to wonder what is what
But the body has lots of things working at the same time
Wait to see what the second values are
Then go from there
 
my little penguin said:
Crp is quick to go up (think 24-48 hours ) not necessarily for crohns
Sed rate is response on longer (1-2 weeks )
Was Sed rate ok ?
Any other numbers off ?
Ds Sed rate /crp went up high (68 Sed rate -normal 0-20 ) once - turns out it was an ear infection turning into mastoiditis.
Abx fixed it and all numbers were normal afterwards
Other time was inflammation of his arthritis (Stelara hadn’t kicked in all the way yet ..) once it did numbers were normal
But he had obvious signs that his arthritis was flaring

one bloodwork is just one data point
Two of the same issue is just a line between two points
If it’s repeated a third time then and only then is it a trend

as a parent hard not to wonder what is what
But the body has lots of things working at the same time
Wait to see what the second values are
Then go from there
Click to expand...

I wanted to add she has had no symptoms, stool is normal, no pain, occasional blood in stool but not much, no mucus.

Sed-Rate was normal at 17mm/h, the only other number which Dr. didn't seem concerned about was Neutrophils was just above normal at 62% - Reference Range: 31 % - 61 %. However this is the first time this was ever above normal.
 
CRP can raise for many reasons independent of the bowel. Yes. Both of my girls have had blips as high a 4.0 in one month only to find them go back down to normal the next month. Anything could raise CRP, a cold, a virus, one day of an upset stomach and diarrhea, even an injury like a twisted ankle. It is just measuring inflammation in the body but is not specific to the GI tract. Fecal calprotecin is a much better indicator as to what is going ronin the bowel. It does sound like 202 is encouraging given where you started and her symptoms do sound like things are going pretty well. I would keep one eye on that blood and one eye on the cal pro though. I am glad your doc is running another lab. You are in good hands. I think you can relax for now.
 
Hello everyone, an update on A, she has been on Remicade for awhile now with no issues. However she had a MRCP done on her pancreas since she has EPI and a recent MRCP showed her pancreas smaller than usual. He recent scan shows Atrophy of the pancreas, it has gotten worse and Dr diagnosed her with Silent Chronic Pancreatitis. She has had no symptoms or pain so thats why its called "Silent" Dr does not know the cause of this other then it could be because she has UC and studies show that this can happen with crohns and UC patients. He A1C and glucose levels and all bloodwork is normal. I have read that if the pancreas get real bad it will stop producing insulin and type 1 diabetes will develop. My question is, has anyone here experienced this condition with their IBD and/or have diabetes with IBD? Not saying she will get diabetes, but its very possible in the future if her pancreas does not stop shrinking. Any info or help is greatly appreciated.
 
If inflammation is under control the the pancreas is no longer inflamed in IBD
Pancreatitis is an extra intestinal manifestation
Control ibd and pancreas inflammation goes with it
 
Ive read the Remicade can cause pancreatitis and ive also read that remicade can be used to prevent it or stop it. Confused!!
 
Get a second opinion at another hospital
Cincinnati children’s
Children’s of Philadelphia
Or Boston childrens
They can do it online as a records review
Your child is a complex case
Getting more than one set of eyes on her is important especially if they are waiting for diabetes to develop

paradoxically reactions can happen
Remicade can treat psoriasis
But can also “Make it come to the surface” it in some patients

same with arthritis/pancreatitis/ms etc for all biologics
It’s a chicken and egg thing
Which came first
And did the drug cause it to come to the surface or was it there all the time
 

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