Severe Anemia with Crohn's

[amw2003]

Daughter diagnosed with Crohns 1.5 years ago in upper and lower intestine plus a list of other things. She is now getting Remicade every 6 weeks. She has been having a problem with severe anemia and has had 3 iron transfusions with it only getting worse. Iron saturation is 2, ferritin is 3, TIBC very high,platelets high, co2 level low. 14 year old, anyone else have this going on?

 

[Farmwife]

What testing have they done lately of the bowels?
What has the docs said?

 

[Farmwife]

Also, what meds is she on?

 

[Guerrero]

Hi amw, sorry to hear this.
Anemia is common with crohns due to lower absorption or blood loss.
Which medications is she taking?

 

[amw2003]

She is on 300 Remicade every 6 weeks.

 

[amw2003]

Had endoscope, colonoscopy, biopsy when first diagnosed 1.5 years ago and a couple calprotectin tests in the past but mostly only blood tests.

 

[Guerrero]

She is on 300 Remicade every 6 weeks.

For how long has she been on remicade?

 

[amw2003]

On Remicade for 1.5 years

 

[Maya142]

My kiddo was iron deficient and needed iron infusions too. She needed 4-5 before her Ferritin started going up. This was before she was diagnosed with Crohn's - we couldn't figure out how she had become so iron deficient. Her hemoglobin was low, but not terrible - it was 9. It did go up after the iron infusions.

It sounds like your daughter's Crohn's is not controlled if she is becoming so anemic. I would push for testing - usually they do a fecal calprotectin first and if that's high then scopes. It may be that Remicade is not working for her. She may need a higher dose and more frequent infusions. Or she may need a different biologic.

I would first figure out if her disease is under control - it really sounds like it isn't. High platelets can be due to inflammation. Have they checked ESR and CRP recently?

 

[Farmwife]

Has the GI talked about scoping again or using an mri to find the cause?
In Grace's GI clinic is common to get scoped after a year.
That way they can see how the treatment plan is working.
Grace had remicade every 4 weeks.

 

[Guerrero]

My kiddo was iron deficient and needed iron infusions too. She needed 4-5 before her Ferritin started going up. This was before she was diagnosed with Crohn's - we couldn't figure out how she had become so iron deficient. Her hemoglobin was low, but not terrible - it was 9. It did go up after the iron infusions.

It sounds like your daughter's Crohn's is not controlled if she is becoming so anemic. I would push for testing - usually they do a fecal calprotectin first and if that's high then scopes. It may be that Remicade is not working for her. She may need a higher dose and more frequent infusions. Or she may need a different biologic.

I would first figure out if her disease is under control - it really sounds like it isn't. High platelets can be due to inflammation. Have they checked ESR and CRP recently?

I completely agree

 

[amw2003]

No recent esr or crp. She just went from every 8 weeks Remicade to every 6 weeks but I have been told she never went into remission.

 

[Guerrero]

Do they think the increase of remicade alone may bring remission even if there was no response (at all?) during 1.5 years?
EEN as an exclusive nutrition may be very effective for kids. Could worth a try, maybe with a second opinion of another ibd team.

 

[amw2003]

There are only 4 Doctors in our area whom accept the insurance and have been to all. She does not have symptoms (pain, diarrhea) but obviously inflammation still there and anemia has been getting worse.

 

[my little penguin]

You may have to drive to one of the big places
A lot of food kid drive hours to see good ped GI
Nemours is supposed to be good
Tagging Dancemom

 

[crohnsinct]

Sounds like she hasn't reached remission to me. 300mg every 8 weeks is at the low end for most average weight teens. How much does she weigh?

I think the move to 6 weeks is good.

When you say obvious inflammation, what makes it obvious? Her labs? Symptoms? The anemia?

Anemia is a beast. There are soooo many causes for it. I posted a good paper on it here a long time ago. I will look for it. True for IBD kids the suspect is usually disease activity but there are so many other causes.

Has she started menstrual cycles? How are those?

I would be asking for a fecal calprotectin test to see what those numbers show and on the heels of that upper and lower endoscopy. Throw in small bowel imaging for good measure!

 

[amw2003]

Just spoke with doctor and she is going in for an extra Iron infusion next week, he also said she could just have an iron injection, not sure which is better. he is running a new calprotectin test and will go from there. He said her sed rate was good though. She will not tolerate another MRI.

 

[amw2003]

I go to best in area, Florida hospital for Children in Orlando

 

[Maya142]

If she won't do an MRE, what about scopes?

With the MRE, is drinking the contrast the hard part for her? They can place an NG tube and pump it in to her stomach. My daughter did this last time (she has a G tube, so we used that) and it was MUCH easier than her trying to drink the barium/breeza or whatever they use.

A fecal calprotectin is a good first step though. If that is high, then I would DEFINITELY push for more imaging.

Another thought - you might want to see a hematologist - they may be able to tell what kind of iron is best for her - infusions vs. injections. There are also different kinds of infusions with varying amounts of iron. We saw a hematologist when my daughter needed iron infusions and it was a big help.

 

[amw2003]

She tried an MRI once but she will not do again, could not drink the liquid and the G tube would hurt plus I read that what they inject with has been discovered to be dangerous. I do not see how a hematologist can help if she is bleeding somewhere inside. The ESR (sed rate) was good but calprotectin monitors something else?

 

[crohnsinct]

If she won't do an MRE/MRI and fecal cal is raised and you find yourself facing scopes, may I suggest that you discuss a pill cam with the GI for small bowel imaging. It sounds like maybe she wouldn't swallow it but the GI can place it during scopes. The caveat would be that if there is extensive small bowel inflammation you run the risk of the pillcam getting stuck so a dummy is usually done first to see if it makes it out. Maybe she could at least just swallow the dummy and then have the real one placed during scopes?

How are her symptoms?

 

[crohnsinct]

Yes, calprotectin monitors neutrophils she by the intestinal lining. ESR is just a marker of inflammation. That inflammation can be anywhere in the body and for numerous reasons. Calprotectin is very specific to the GI tract. It doesn't always mean IBD. There are other reasons that the tract might shed neutrophils but since she already has a dx a raised fcp would indicate IBD inflammation. Often with kids who have normal blood markers their inflammation will only show in the FCP. We love that test. OUr GI does it at every infusion.

 

[Maya142]

A hematologist will just help with deciding what kind of iron is best for her - but obviously her GI has to tweak her treatment plan to stop the bleeding.

A NG tube does not hurt when it is placed - it is uncomfortable, but not terribly so. They use a very thin tube that is like a strand of spaghetti. My daughter inserted her own NG tube for months for overnight tube feeds. Plenty of kids do it every night - once will not be so bad.

I think the jury is still out on Gadolinium - every test comes with risks. With the Small Bowel Follow Through, there is a lot of radiation. With an MRE, you eliminate the radiation. With a pillcam, there is always the risk of the pillcam getting stuck - they generally will use a dummy cam first to make sure there are no strictures.

What I'm trying to say is that every test has risks and benefits. Your doctor needs to decide which is right for your daughter. Considering she is bleeding and anemic, I would say figuring out what is going on with her Crohn's is a BIG benefit and outweighs the risks. But that is something you need to discuss with your doctor.

 

[DanceMom]

I go to best in area, Florida hospital for Children in Orlando

Definitely not the best in the area. Sorry. Nemours (in Orlando) and JHACH (in St.Pete) are the best overall in Central FL. We see GI at Nemours and have since 3 months after they opened. Definitely get a second opinion.

 

[amw2003]

We saw a GI when they were trying to figure out what was wrong and this was a board certified GI from Nemours, she gave my daughter a years supply of antihistamine to help her gain weight. From all my research and talking to many health care professionals, Florida Hospital for Children is the best.

 

[Optimistic]

She tried an MRI once but she will not do again, could not drink the liquid and the G tube would hurt plus I read that what they inject with has been discovered to be dangerous. I do not see how a hematologist can help if she is bleeding somewhere inside. The ESR (sed rate) was good but calprotectin monitors something else?

I am sorry to hear about your daughter. I hope they can sort this out and point her towards remission soon!

My son has used the G tube for the MRE. Yes, it hurt, a lot he said, but that test is the gold standard for tracking his disease. Can you bribe her?

Can you tell me more about what you read about the injections being dangerous? Many or maybe all of the treatments and tests for Crohn's have drawbacks, but unchecked or not fully monitored Crohn's is much worse. I hate that, but it is the reality we face.

You mentioned seeing 4 drs in the area. Did any of these give an opinion on her anemia or suggest different tests or treatments?

Good luck.

 

[DanceMom]

We saw a GI when they were trying to figure out what was wrong and this was a board certified GI from Nemours, she gave my daughter a years supply of antihistamine to help her gain weight. From all my research and talking to many health care professionals, Florida Hospital for Children is the best.

Not sure who you saw, but I'd be happy to give you the names of several fabulous GIs at Nemours. You can't base an entire team of doctors off of one doctor you saw. If you don't feel you're getting adequate care you should seek another opinion. We've also been to CHOA in Atlanta and had good experiences there as well. As our GI says, "a good doctor will encourage you to seek multiple opinions."

 

[amw2003]

We have been with 5 different Drs. and do not agree about nemours.

 

[DanceMom]

We have been with 5 different Drs. and do not agree about nemours.

No need to agree. It's not a debate. But you've had several BTDT moms suggest you ask for more testing and/or seek another opinion. I've offered to give you names of several outstanding GIs at Nemours and CHOA. Seeking another opinion doesn't mean you have to leave your current GI if you really like him or her. But it sounds like your child is really struggling and if that were my child (and my child is often struggling because she's a pretty rare bird) I'd evaluate my options and get recommendations from multiple sources.

 

[Maya142]

I agree with DanceMom - a second set of eyes cannot hurt, especially when your child's treatment plan does not appear to be working. You don't have to switch to the second opinion doctor, or even follow their recommendations. It's just an opinion to see if there are other options.

We have done several second opinions over the years, and have even traveled to different states for them. It has been very worth it.

I would also say go with your gut. It sounds like you feel like something is not right with your girl (and given the severe anemia, I would agree).

Also, just wanted to add what we were told several years ago - iron injections are painful, that is why they use infusions more now, especially for kids. I just wanted to warn you, my daughter never had them so I can't say how painful. But our pediatrician told us they were painful and he was glad M would be having infusions.

 

[my little penguin]

Regardless of who you see
Why hasn’t she had more testing ?
Ds is required to have a scope /MRE /pill can typically once a year sometimes longer if he is doing well
If he isn’t doing well
Then testing is required quickly

How many mg/kg does she get of remicade ?
Most do 5mg/kg
Then 7.5 mg/kg
High dose would be 10 mg/kg

Ds required 7.5 mg /kg every 6 weeks when he was 8

We have been dealing with this for almost 7 years now
So please understand
And MRE is looking to see how much her intestine has thickened (scar or inflammation)
It’s also looking for strictures (narrowing ) of the intestine
The small intestine can not be seen on a scope
It’s to stop damage before you get rushed for emergency surgery
It’s not an optional thing

I understand you have a teenager
Ds is 14 as well
But things that can risk his life are not avoided
Other things he gets to say no about
He gets to chose to drink the barium or ng tube it
But not if he does it

He does get very sick with it
He has life threatening allergies to the contrast etc used
So an MRE for him means 13 hours of pre meds with iv solumedrol
As well as many nurses and doctors in the MRE room watching him
Closely

That is not tolerating an MRE
Having a hard time drinking the barium is a given

You can ask for a different brand to drink
Last one Ds had was clear like sprite and much easier to drink
Not pleasant but less chalky

Another parent I know
Avoided MRE for her kiddo
Didn’t want to stress the kid
After a few years of higher test results but not alarming
The mom agreed to an MRE
Next day kiddo was having emergency surgery
Multiple strictures were found
Two of them were ballooning and ready to burst

So kiddo lost 80 cm of small intestine
And had tpn (no food just iv nutrition for a while )
Plus lost school /work for weeks to recover

I am not trying to scare you
But trying to make you aware
There is a good reason kids /parents. Go through an MRE and drink the horrid
Liquid
Because without them
The evil disease can be deadly


Really hope the doc can get tests done scope imaging pull cam so you can get to the bottom of why she is so sick

 

[Maya142]

I want to add to that - an NG tube REALLY is not that bad. I promise it sounds a lot scarier and more intimidating than it really is. It's a thin flexible tube that is put in through the nose and threaded down into the stomach. My daughter was uncomfortable and unhappy the first time it was put in, but it wasn't excruciatingly painful or anything like that.

Within a few days, she had gotten very good at inserting the tube by herself and it didn't hurt at all. She inserted it every day for 8 months or so.

A G tube, on the other hand, is a surgically placed tube - placed in the stomach for kids who need formula long-term. That is TOTALLY DIFFERENT from an NG tube. That does hurt initially because it requires surgery to put it in!

An NG tube takes 10 seconds to insert. The kiddo drinks water while it is inserted and it slides right down. It can make the whole procedure a lot easier.

The first time my daughter had an MRE she drank the barium - hated it, but did it because she understood it was important for her GI to see the state of her small bowel. It was not optional, just like taking her medications is not optional.

She found that MUCH harder than being contrast by tube.

If it makes her nauseous, they can give her Zofran to help with that.

And of course, bribery helps!!

 

[crohnsinct]

My daughter got most of her contrast in. Not going to lie. It was a battle. She got very, very sick and threw up all over the place. Luckily she had enough in her that they were able to do the MRE. The MRE staff actually suggested that the next one she have, she should do it same day as scopes because her stomach would be empty and it might be easily to drink it. I jokingly said I thought it was cruel to have contrast be the first thing you drink and they said they could place the tube while she was under for scopes and she could even eat a little something then do MRE.

If you go to scopes I would ask about that as well as placing a pill cam during the endoscopy.

But honestly if her colon is a mess at scopes then the doc might not even want an MRE. We have had two docs say the same to us...What they saw in the colon was enough to make them change treatment and no amount of inflammation in the small bowel would change their plan so why do it.

But small bowel imaging is inevitable at some point in time. Especially if the colon is nicely healed and they don't "see" anything. They have to look further.

 

[Catherine]

Daughter diagnosed with Crohns 1.5 years ago in upper and lower intestine plus a list of other things. She is now getting Remicade every 6 weeks. She has been having a problem with severe anemia and has had 3 iron transfusions with it only getting worse. Iron saturation is 2, ferritin is 3, TIBC very high,platelets high, co2 level low. 14 year old, anyone else have this going on?

What is the hemoglobin level? Is it going up? Did increase after the transfusions?

If the anemia is Anemia is cause by low level irons it should response to iron transfusions.

If the Anemia is Anemia of Chronic Disease it is unlikely to response to iron transfusions. You need to get the underlining disease under control.

You need the opinion of a blood specialist and testing to see whether he Crohn's is under control.

My daughter had iron levels like your daughter just before dx only symptoms pain and Anemia. She lost 14 kgs in the next 2 months which led to her Crohn's dx. At dx she was 44kg and 5ft 8inch at 16. Crohn's treatments are scary but so is under treated Crohn's Diesease.