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Not Sure

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 ?
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. :)
 
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. :)
Great, thanks for the info, how long has your son been on Remicade?
 

DustyKat

Super Moderator
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?
 

my little penguin

Moderator
Staff member
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 ?
 

my little penguin

Moderator
Staff member
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
 

crohnsinct

Well-known member
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.
 
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.
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.
 

crohnsinct

Well-known member
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.
 
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.
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?
 

my little penguin

Moderator
Staff member
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
 
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
She did have blood in stool last night too. :-(
 

my little penguin

Moderator
Staff member
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 .
 

my little penguin

Moderator
Staff member
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
 

crohnsinct

Well-known member
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.
 
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.
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 ?
 

crohnsinct

Well-known member
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?
 
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?
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.
 

crohnsinct

Well-known member
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.
 
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.
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.
 
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