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Iron Deficiency Anemia

Switched to Stelara In Oct 2018 since Remicade was no longer working. Stelara is working as her Sed rate tests are normal but the iron deficiency anemia is still there and has to go for infusions every 4 weeks since Ferittin level drops so low. Originally the doctor said that the bleeding would stop once the inflammation was under control, well inflammation is under control per Sed rate blood test but Iron Deficient Anemia as bad as ever. Our Doctor and no answer other then that it could takes years to replenish her iron store which makes no sense to me. Where is the bledding coming from them or is this just something that happens and she will have to go for iron infusions forever. Also could this be causing any scar tissue? Thank you
I don't have any certain answers for you other than to confirm that the iron deficiency anemia can arise or hang around in spite of no visible blood or bleeding. I had severe anemia when I was first diagnosed. My hemoglobin was down around 6 and my ferritin was way low too. A lot of blood had to go away for hemoglobin to get that low, yet I never saw any bloody or black, tarry stools or any other visible signs of blood loss.

Once I got my Crohn's under control, first with budesonide and eventually with Stelara, the anemia did go away. But I took iron supplements for well over a year to achieve that. And I still don't know where all that blood disappeared to.
Iron supplements did not work, only infusions. 9 months on Stelara now and previously 2.5 years on Remicade. There is blood in the fecal occult sample.


Staff member
If she's still bleeding, then her Crohn's is not in remission. She may need a higher dose of Stelara, or more frequent injections, to fully control the inflammation. I'm going to tag my little penguin, since her child had success with a higher dose of Stelara.

my little penguin

Staff member
If she has fecal occult blood then she is still bleeding .... doesn’t matter that the sed rate reads normal .

As far as building iron stores
Think of your pantry at home
The pantry is iron stores
You grocery shop weekly to keep it full.
While making breakfast lunch and dinner daily .

While she is bleeding and or inflamed her body was consuming 2-3 times what it should for each meal and wasn’t going grocery shopping
You end up with an empty pantry
Takes time to build it back up again

Ds sed rate and crp was normal
But he still had inflammation
He was on Stelara every 8 weeks at 90 mg for 8 months -Started Aug 2017
Still inflamed .
He moved to Stelara every 4 weeks in March 2018

That has made a big difference
That said his iron numbers are still on the lower end of normal
And always have been
Not low enough for an infusion
But lower iron supplements were too hard in his body
But those can take a year or more to be effective
Would it be possible to have something bleeding like a fissure or whatever else is there, perhaps something that opened up? Has not had a Calproctin test in a year. The doctor does not run a CRP test.
Sed rate doesn't change immediately with inflammation and takes a while to go down after inflammation is gone. CRP is more immediate.

Either way, I would insist on a cal pro test. It is easy to run and a very good indicator of intestinal inflammation.

When was her last FOBT?
Anal issues will result in a positive FOBT as would her menstrual cycle and hemorrhoids. But I agree that they probably wouldn't make her need iron. But other conditions unrelated to Crohn's could make you need iron infusions. My first step would be to really put to rest any suspicion of Crohn's inflammation and then look for other causes.
I did not mean anal fissure, she had one of those a few years ago. I meant something in the intestinal system that could have opened up. She has Crohn's in both intestines. Her sed rate was very high until the last four months when it went to normal.

my little penguin

Staff member
If crohns is attacking the intestine
Then it can cause ulcerations which can bleed as well as plain intestines that can bleed .
Definitely ask for more testing
Fecal cal CRp pill cam etc....
Poor kiddo
Pill cam was inconclusive. Dr. said is Sed rate was normal then no inflammation. He never wants to deal with difficult cases.

my little penguin

Staff member
Can he explain the bleeding and need for transfusions then ??
Can you get a second opinion at another kiddie hospital ?
Some will give you a record review (meaning you don’t have to physical be there
Any big kiddie university hospitals within 4-6 hours drive ?

Definitely worth the second opinion.
Sed rate is just one number
Well that is good news that the pill cam didn't find anything but it only records what it happens to be looking at, at the moment. When was her last scope? MRE? I know you had another thread going a bit ago but can't remember, has she seen a hematologist?

I would ask for that calpro test. If inflammation shows on there he will be forced to face it.

Maybe time for a second opinion.


Staff member
It's definitely possible to have a low sed rate and have very active Crohn's. Some people have completely normal inflammatory markers while having active disease - my daughter did, when she was diagnosed. ESR was very low - like 2 or 4 or something. But scopes still showed ulcers and inflammation.

If she's still bleeding, her IBD is definitely not in remission, no matter how low her Sed rate is.

My daughter had a similar situation - her Ferritin levels were found to be very low. This was before she was diagnosed with Crohn's. We saw two hematologists and both said she must have bled at some point since her iron stores (Ferritin) were so low, though she had never seen blood in her stool - no red, nothing black or tarry.

We tried oral iron supplements but they didn't increase her iron levels, so moved on to infusions. Those helped her - got her iron levels up.

About a year after she needed iron infusions, she was diagnosed with Crohn's, so her GI thought that she must have bled at some point without knowing it/seeing it. Her GI said if we kept the Crohn's under control, then she shouldn't need any more iron infusions. She was put on Remicade and MTX and her Crohn's got better. And she hasn't needed iron supplements since then.

So I'd definitely want a second opinion with another GI to figure out whether she has active inflammation in her gut or not. You could also see a hematologist and rule out other stuff, but my guess is that if she's bleeding, it's like the Crohn's.
We had a second opinion last summer from a Doctor at CHOA (Atlanta, we sent all her records there but cannot afford to get there), he was the one that finally convinced our Doctor to put her on Stelara but he thought every 4 weeks, our doctor has her on weeks. Our doctor worries that when Stelara stops working there will be nothing else. There are no other doctors as we have been to all of them at some point. She saw a Hematologist in the past whom said it was a GI issue. her last scopes were a year ago but pictures not great and rushed. Dr. in GA wants to redo but again cannot get there. She was diagnosed with Crohn's in April 2016, both intestines.

my little penguin

Staff member
If travel expense is an issue please contact Choa
Most ask those questions
I know our kiddie hospital has asked more than once
The social workers can help you get there

Ds was on Stelara every 8 weeks
Still had inflammation on scopes after 8 months
And was switched to every 4 weeks

The problem is she is bleeding and probably still inflamed

If you saw Choa that was a year ago
You may still need another second opinion since Choa wanted another scope and Stelara every 4 weeks
And your current Gi doesn’t agree
CHOA does not pay for travel. doctor only reviewed medical records I sent them. Our doctor here said Medicade would not approve her to have Stelara more often. Do you think scar tissue is being formed which CHOA had mentioned was a concer if I remeber right. Our Doctor seems fine with regular iron infusions.

my little penguin

Staff member
Chronic inflammation can cause scar tissue if it’s left uncontrolled or under controlled
Our insurance didn’t approve Stelara more often
The doc had to do multiple appeals and peer to peer reviews
I am sorry that your child doc is ok with regular iron infusions

Can’t emphasize it enough to see another doc
There are always new docs in the area
There are always new docs in the area
THAT! I was just going to say that. The fellows are constantly graduating and joining teams. We are always getting updates about new docs coming to the practice or old docs leaving. IDK what the details are about why you left some of the oldpractjices but maybe with this new development they might have some good ideas for you.

It is not acceptable for a doc to say, "well insurance won't approve it" without even trying. But he has to have some good information for the appeal because they won't approve an escalation with a normal sed rate. I am thinking CRP, calprotectin, MRE and scopes. A dose escalation is going to be a lot cheaper than an admit down the road.

What other drugs has she tried?


Has anyone the mentioned the possibly of anemia of chronic disease with concurrent iron deficiency anemia? Do you have the iron numbers?