Normal blood is flare still possible

[Leed2713]

My son in the past few weeks has had two black bm's and these were his only bm's. Then he did have a bm on Tuesday night that was normal just with bright red this time. He was then complaining of ffeling very warm and had a temperature on and off for a few days. Nausea and cramps continuing as well. The GI nurse rang back to say the black could be from him not going in over a week and the red could be from straining then when he did have a movement. she said the bloods for his crohns makes them feel this is not crohns. She told me to continue with 10ml per day of sodium pico and the should take him to GP about the temperature. Last night he was up most of the night with pain at a level 8. He described it as starting at a 4 and building to the 8 and took quite some time to go away. He then described pain this morning as quick sharp pains. I had to go to work so he has slept most of the morning at my mums and now says he just feels nauseous and his stomach hurts when he moves but no pains at the moment. I really don't know what to think. I rang nurse again and left message and mentioned about the meckels diverticulum that they noticed during his surgery but did not remove. He has also scar tissue at the resection site although gi was happy with mri. I fell like I am torturing the GI Nurse but this is not normal and has to be crohns related. I don't believe his blood work truly reflects what's going on if that is possible. also I wonder is it possible that azathioprine and infliximab can mask things ?? probably a really stupid question I know but just thought I would ask.

 

[Maya142]

It is absolutely possible to be flaring and have normal blood work. Many kids do. Can you ask them to do a Fecal Calprotectin test? That's more specific and will tell you if there is inflammation in the bowel.

 

[Leed2713]

It is absolutely possible to be flaring and have normal blood work. Many kids do. Can you ask them to do a Fecal Calprotectin test? That's more specific and will tell you if there is inflammation in the bowel.

Yeah I think I may have to do that. I do genuinely believe his his things a lot before he ended up with surgery.

 

[Maya142]

I can't believe they are ignoring black BMs. I know he hasn't had any for a few days, but that is really worrisome. The red BM suggests fresh blood - was it very little blood or a lot? If it was a lot, I would guess it's not from straining or a fissure.

The temperature also suggests a flare.

I really hope you are able to get this straightened out soon.

 

[pdx]

I'm sorry you're having so much trouble getting your GI to take this more seriously. For the last year, my daughter's blood markers haven't been good markers for her Crohn's inflammation. Her doctor remarked to us just yesterday that she finds that once kids are in treatment, blood markers often aren't good indicators. I agree about asking for a fecal calprotectin.

Good luck, and please don't worry that you're bothering the GI nurse--your concerns are real!

 

[Jmrogers4]

I have a kid who is always in normal range despite massive inflammation happening inside. Normal range is 0-15 for us he is 4-5 when in remission and a 9-10 when flaring badly (as seen on MRE) so still within normal ranges. Even when he had a MRSA infection he was a 15 (highest he has ever been).
Fecal was a good indicator for us which prompted the MRE even the inflammation was only a 9. Fecal was anything under 50 was good and I think he was 80 or something like that (I would have to go back and look because I can't remember exactly) I know many kids are in the 1000's but my kid just doesn't seem to register inflammation very well.
I've kept an excel chart with all of his tests and made notes when he was having symptoms I've gone over it with his GI so that he could see the pattern and now he gets worried and calls me if he sees labs come back in the 7-8 range to see how Jack is feeling. It's difficult as my son is fairly asymptomatic his biggest indicator in the past has been lack of growth but now that he is 17 and 183cm he is not likely to grow too much more anyway so we watch his numbers pretty closely and go off what is normal for him and not so much what they consider normal for the population.

 

[Faithsg]

My son had normal blood tons of pain and other symptoms. He was scoped and they found inflammation. It wasn't a lot but the place is known to cause lots of pain. He was also diagnosed with EOE. So normal blood but things were wrong.

 

[my little penguin]

So few things
Is he having regular (daily soft formed -Bristol 4-5 ) bm ?
Or is he still only going once a week or every few days ?
In three weeks he has only had 3 bm even with osmotics(movicol)?

The reason I ask Ds had a GI issue last year of pure d could tolerate any solid food at all .
Did a ton of tests -Crohns was fine
They put him on all formula which constipated him to the point of only going once a week
This created a lot of abdominal pain and nausea etc...
Lots of hospital admissions trying to figure out the problem

Finally they let him have food /formula mix and switched laxatives/stool softeners from colace to miralax(movicol )
After a week of going every day with a normal bm - all of his other symptoms got better

He still has issues with certain foods and abdominal pain but it wasn't Crohns

The year prior to that lots of abdominal pain nausea didn't want to eat
Thought -Crohns
Lots of tests -not Crohns
Found out it was gastroparesis

Ds bloods always look normal so the GI looks at them and just runs other tests to try to figure things out


I am not saying it isn't Crohns
But if he isn't going daily changing laxatives/stool softeners can answer that easy question of constipation

For ds milk wheat chicken beans and beef cause a lot of stomach discomfort (think doubled over ) but everyone is different


Just try not to get stuck
This caused it vs what are the symptoms and the likely cause
What can we rule out if we fix (in this case daily soft bm ) to go back to the doc and say we did xyz .....

Always hard when they are in pain

 

[Leed2713]

I can't believe they are ignoring black BMs. I know he hasn't had any for a few days, but that is really worrisome. The red BM suggests fresh blood - was it very little blood or a lot? If it was a lot, I would guess it's not from straining or a fissure.

The temperature also suggests a flare.

I really hope you are able to get this straightened out soon.

There wasn't a lot of red on the normal bm but there was definite fresh blood. He has continued to feel sore when he moves and said that he has had extreme nausea at points during the day. Still no movement of the toilet front today. He has had a few of the sharp pains he described but not constant. Hoping to get to the bottom of this soon and going to request a faecal calprotectin.

 

[Leed2713]

I'm sorry you're having so much trouble getting your GI to take this more seriously. For the last year, my daughter's blood markers haven't been good markers for her Crohn's inflammation. Her doctor remarked to us just yesterday that she finds that once kids are in treatment, blood markers often aren't good indicators. I agree about asking for a fecal calprotectin.

Good luck, and please don't worry that you're bothering the GI nurse--your concerns are real!

Yeah I thought there might be a possibility that medication could affect it. I know I shouldn't worry as he is my son and I just want what's best for him. Need to stop beating myself up over ringing as I know they are there to help.

 

[Leed2713]

I have a kid who is always in normal range despite massive inflammation happening inside. Normal range is 0-15 for us he is 4-5 when in remission and a 9-10 when flaring badly (as seen on MRE) so still within normal ranges. Even when he had a MRSA infection he was a 15 (highest he has ever been).
Fecal was a good indicator for us which prompted the MRE even the inflammation was only a 9. Fecal was anything under 50 was good and I think he was 80 or something like that (I would have to go back and look because I can't remember exactly) I know many kids are in the 1000's but my kid just doesn't seem to register inflammation very well.
I've kept an excel chart with all of his tests and made notes when he was having symptoms I've gone over it with his GI so that he could see the pattern and now he gets worried and calls me if he sees labs come back in the 7-8 range to see how Jack is feeling. It's difficult as my son is fairly asymptomatic his biggest indicator in the past has been lack of growth but now that he is 17 and 183cm he is not likely to grow too much more anyway so we watch his numbers pretty closely and go off what is normal for him and not so much what they consider normal for the population.

That is a great idea about keepin a chart I must start to do that as well. I think my son is the same as your and doesn't register the inflammation well. Faecal calprotectin will definitely be what I ask for now. When he had his surgery it was exploratory and ended up pretty major and they says it was definitely going on for a long time as they were shocked at how bad things were inside. He has a seriously high pain threshold too and they commented on that. I think that was why they delayed taking him to theatre. His marker didn't increase but not off the scale. He had a black appendix that had perforated an abscess and stricture. So ended up with right hemicolectomy, appendectomy and part of the terminal ileum removed. On this occasion I had been saying from the March that something was going on the surgery was on the 7th June. I believe it was going on from the March and bloods didn't reflect it but he did have symptoms.

 

[Leed2713]

My son had normal blood tons of pain and other symptoms. He was scoped and they found inflammation. It wasn't a lot but the place is known to cause lots of pain. He was also diagnosed with EOE. So normal blood but things were wrong.

I think my son may be the same but I don't want to seem like a hypochondriac. He is my priority though and if I have a hunch that things aren't right I will continue to call. His last scopes showed a narrowing at the resection site but the GI was happy with the MRI that followed and said he felt it wasn't a stricture. I think it's scar tissue abs think the infliximab has made him heal quicker making the narrowing a problem. I hope to God I am wrong though after all I'm not a GI

 

[Leed2713]

So few things
Is he having regular (daily soft formed -Bristol 4-5 ) bm ?
Or is he still only going once a week or every few days ?
In three weeks he has only had 3 bm even with osmotics(movicol)?

The reason I ask Ds had a GI issue last year of pure d could tolerate any solid food at all .
Did a ton of tests -Crohns was fine
They put him on all formula which constipated him to the point of only going once a week
This created a lot of abdominal pain and nausea etc...
Lots of hospital admissions trying to figure out the problem

Finally they let him have food /formula mix and switched laxatives/stool softeners from colace to miralax(movicol )
After a week of going every day with a normal bm - all of his other symptoms got better

He still has issues with certain foods and abdominal pain but it wasn't Crohns

The year prior to that lots of abdominal pain nausea didn't want to eat
Thought -Crohns
Lots of tests -not Crohns
Found out it was gastroparesis

Ds bloods always look normal so the GI looks at them and just runs other tests to try to figure things out


I am not saying it isn't Crohns
But if he isn't going daily changing laxatives/stool softeners can answer that easy question of constipation

For ds milk wheat chicken beans and beef cause a lot of stomach discomfort (think doubled over ) but everyone is different


Just try not to get stuck
This caused it vs what are the symptoms and the likely cause
What can we rule out if we fix (in this case daily soft bm ) to go back to the doc and say we did xyz .....

Always hard when they are in pain

I hope so much that it is constipation but I really don't think in my heart it is. He has had constipation since surgery and I had stated this. On the last GI appointment which actually was the day prior to his first black motion I asked if it would be ok to give him the sodium picosulphate as I knew I had some in house from his last scopes prep. I told the GI about the constipation and he was just adamant that his Crohns is under control and bloods are good. He didn't seem overly concerned about the constipation. At that point fatigue was a big issue which he also said was not Crohns or infliximab and to go to my GP for further tests. Then after I rang about the black motion the GI nurse rang me to say to take the sodium pico every day as he needs to be going to toilet having a bm everyday or every other day at least. But said from a Crohns perspective all is well. He now hasn't went since Tuesday so that's 3 days and counting. This is with the help of a laxative. I really don't understand it all. I just want him to be well. It's so awful what our kids go through. It really is a rollercoaster. As far as bloods are concerned his Crohns is under control but all these symptoms are affecting his life greatly. He has missed so much school this year abdcwhen he does go 9 times out if 10 I get a call that he has went a bad colour has been sleeping in class or is in pain. I know the treatment he is on has great results for everyone but I don't really know if it is the drug for him when he feels like this all the time.

 

[Leed2713]

Sorry for sounding like such s complainer butvwith all the reading and research I am doing he should not be feeling like he is xo. Thanks everyone for replying and fur all your great advice xo

 

[my little penguin]

If your giving sodium picosulfate and he isn't going for at least three days they need to give you something else to give him so he can go
Some kids need lots of meds to have a bm
Ds Crohns is severe constipation .
Not going for even a day puts him in a lot of pain
Three days and there would be tears

 

[Faithsg]

I'm in the same boat as you not all the same symptoms but blood good most of scope good but 10% not being helped by double remicade and methotrexate. My son has been so tired and in pain has not been in school in 6 weeks. Today saw doc he said son looks sick but blood awesome he believes my sons pain I told him this kid is not feeling right. He took more blood and is testing for bar Epstein and we are going to do an x ray with some kind of contrast 3 hours and its of small intestine parts they can't see on scope. My son is getting depressed he likes to be active play sports be with friends. I will be praying that you get answers and your son is pain free and full of energy soon

 

[my little penguin]

Faithsg
Your GI is talking about an upper GI series with a smal bowel follow through
The kiddo drinks barium and then gets a series of up to 15 X-rays (lots of radiation)
To watch the barium Go through the intestine.
Most do not use that test very much
Since they have an MRI machine
They get an MRE (MRI with entography) - drink a barium
Like liquid and the MRI takes pictures of the small intestine (low radiation and better resolution

Fwiw Ds has an upper GI series with a small bowel follow through prior to dx of Crohns
He had 15 X-rays -maximum allowed - since the barium didn't move well they never saw the terminal ileum
The radiologist was even brought in to try to get a better look than the tech
The radiologist told us - we should be glad he didn't know what was wrong but he could say for certain my kiddo at least didn't have Crohns

- well two months later they scopes and found Crohns
Plus CT scan (CT with entropgraphy ) found thickening in the terminal ileum-that the small bowel follow through did not find

Not a fan of those


Good luck with the tests

 

[Faithsg]

My son has had two MRE's they are very hard on him and painful. He just got scoped so they are focusing on pain from small intestine. This X-ray is not ideal but we are praying for answers to his pain. He started Uceris yesterday.

 

[Maya142]

My daughter has had both - MRE's and SBFT's. She actually thought the SBFT was harder - they made her drink more barium and the barium they used was thicker. She actually threw up the barium and then had to drink more.

The actual test wasn't so bad - after she was done drinking. It is long and boring, but he can walk around between pictures.

What about a pillcam? Has that been discussed?

 

[Leed2713]

If your giving sodium picosulfate and he isn't going for at least three days they need to give you something else to give him so he can go
Some kids need lots of meds to have a bm
Ds Crohns is severe constipation .
Not going for even a day puts him in a lot of pain
Three days and there would be tears

I really can't understand why it's not working for him. I thought it was quiet strong. My opinion is slowly changing. Last night he said to me he felt extremely weak. That was the word he used. I think it is possible constipation is the problem it's now been 5 days since last movement.

 

[Leed2713]

I'm in the same boat as you not all the same symptoms but blood good most of scope good but 10% not being helped by double remicade and methotrexate. My son has been so tired and in pain has not been in school in 6 weeks. Today saw doc he said son looks sick but blood awesome he believes my sons pain I told him this kid is not feeling right. He took more blood and is testing for bar Epstein and we are going to do an x ray with some kind of contrast 3 hours and its of small intestine parts they can't see on scope. My son is getting depressed he likes to be active play sports be with friends. I will be praying that you get answers and your son is pain free and full of energy soon

My sons GI is saying that this is not Crohns but what else is it Crohns is always causing something. He was happy with the MRI even though the scopes did show narrowing at the resection site

 

[my little penguin]

Have you told the doctor it's not causing bm ?
Five days is a long time and needs fixed regardless of any other things going on
Sometimes different agents help better
We found this with Ds

Please let your child's doc know and ask if there is anything else you can try

 

[Faithsg]

The narrowing may cause pain I think. I asked the doctor if it's not his crohns colitis then what at one point they said he may have ibs too but now they don't. They have talked about anxiety meds. Every time they run that stuff by us then do a test they find something. They put my son on uceris I'm hoping that does the trick but he's feeling bad and had remicade Friday. I am at a loss.

 

[Maya142]

I asked the doctor if it's not his crohns colitis then what at one point they said he may have ibs too but now they don't. They have talked about anxiety meds. Every time they run that stuff by us then do a test they find something. They put my son on uceris I'm hoping that does the trick but he's feeling bad and had remicade Friday. I am at a loss.

First - is your son seeing a psychologist? Being in chronic pain can certainly cause anxiety and that can make pain worse. We found seeing a psychologist very helpful, though my daughter was VERY against it at first. Our GI (thankfully) insisted and so my daughter very reluctantly agreed. It made all the difference in the world. The key is to find a therapist who is used to working with kids who have chronic illnesses. Your GI can probably refer you to one.

Second - Uceris works in the colon. If they think his pain is coming from his small bowel, why didn't they put him on Entocort? Or prednisone? Uceris won't help pain from the small bowel at all. He's due for a small bowel follow through, right?

 

[Faithsg]

He also has an area of the colon that's a problem but 90 percent of his colon is good from remicade and methotrexate. They just don't think this small area 10 inches I think should have him in such bad pain he can't go to school due to having pain walking and just being uncomfortable so they are looking at small intestine. He also just got diagnosed with EOE. He is seeing a child psychologist started last week she specializes in children with chronic health issues.my sons crohns has been hard to treat he is just not dealing well after feeling bad for son long again. My son is sad he is in too much pain to play sports and run around. I'm stressed he's missed so much school but he's keeping up

 

[Faithsg]

His birthday is Friday he's turning 12. I decided to do the test next week but may move it up. I'm struggling with time off work I may need to start family leave if he's not better soon.

 

[Leed2713]

His birthday is Friday he's turning 12. I decided to do the test next week but may move it up. I'm struggling with time off work I may need to start family leave if he's not better soon.

Oh faithsg I hope so much u son gets help for the pain soon. It is so horrible seeing them missing so much school and childhood. I struggle too with having to take time off work but I have to say they are very good about it. Just got a letter today from our last appointment with the GI and it is all about how things are great Crohns under control and blood perfect. I am annoyed there is no mention of the fatigue or constipation that I mentioned that day. Still no movement so I left another message with GI nurse to say that sodium picosulphate not helping. Thank u everyone again for you help and advice so grateful for this forum

 

[Leed2713]

Have you told the doctor it's not causing bm ?
Five days is a long time and needs fixed regardless of any other things going on
Sometimes different agents help better
We found this with Ds

Please let your child's doc know and ask if there is anything else you can try

I have left message with the GI nurse so I'm hoping to get call back soon. I know it's now been 6 days. Hopefully it will happen today

 

[my little penguin]

Fingers crossed the GI gets back to you soon
6 days would cause anyone a lot of pain even without Crohns
Wow