Crohns with Anemia as only problem

[Malice67]

Just diagnosed today .. but have NO typical Crohns symptoms - no digestive problems at all ... anyone else have this happen? Did the typical symptoms occur eventually? Does it even sound reasonable to say it is Crohns if I have no symptoms other than SEVERE anemia? (background below if relevant)

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after months of exhaustion, blood tests revealed hemoglobin of 4.6 with no obvious cause (non-menstruating female age 47, no known blood loss).

three months of iron IVs, B-12 shots, folic acid / calcium . vit B supplements to treat my iron and B-12 deficient anemia, hemoglobin finally up to an 11. Diagnosed today with Crohns due to ulcerations seen near illium during upper GI and some other stuff they will explain at next appointment (flattened bowel?? erosions and inflammations) that they saw from capsule endoscopy of small intestine.

 

[theOcean]

That makes sense, yeah. There's other people on the forum here who have been diagnosed with Crohn's, or are in flare without any typical symptoms. Inflammation can occur despite that, unfortunately, which makes it a little dangerous.

You also almost gave me a heart attack with that hemoglobin number until I realized it meant 46.0. Mine got that low as well when I was sick from Crohn's, and I had to get a blood transfusion as well as multiple iron transfusions.

 

[Malice67]

You also almost gave me a heart attack with that hemoglobin number until I realized it meant 46.0. Mine got that low as well when I was sick from Crohn's, and I had to get a blood transfusion as well as multiple iron transfusions.

Yeah -- forgot we use g/dL in the states where other countries tend to use g/L. Don't think I would be alive with 4.6 g/L

At what hemoglobin level did they drop the iron IVs? I'm up to 11 g/ dL (110 g/L) but haven't tested in past three weeks to see if it STAYED up.

 

[theOcean]

Haha, yeah, at 4.6 being alive would be a bit questionable.

I think I was still in the 50s-60s range. Once I was finally in the 70s I was just taking iron supplements and my levels slowly went up from there. It was such a struggle, though. Are you on any iron supplements? Do you still feel a lot of fatigue, and are you getting any medication for the inflammation?

 

[Malice67]

Had anemia when younger and didn't tolerate oral iron -- gave me all types of digestive problems... currently waiting for hematologist and GI to send each other reports before they schedule me for more appointments.. will find out about IV versus oral iron at that point.

 

[shamrock15]

There is one form of oral iron that is a little different - it's called proferrin and is not mineral iron. It comes from oxblood, so it is easier on the bowels. I was able to tolerate it, but I was losing too much iron for it to be effective when I had my anemia. I was getting two units of blood roughly every 6 weeks for almost 3 years. When I stopped counting I was over 60 units. My lowest hemoglobin was low 50's, and even after transfusions I was normally only into the 80-90 range. Hard to shovel out a Canadian snow storm with that.

 

[theOcean]

Had anemia when younger and didn't tolerate oral iron -- gave me all types of digestive problems... currently waiting for hematologist and GI to send each other reports before they schedule me for more appointments.. will find out about IV versus oral iron at that point.

Proferrin is the only oral iron supplement I've found that doesn't cause digestive problems. You might want to try that if you do have to try supplements again.

EDIT: Oops! shamrock15 beat me to it.

 

[vonfunk]

At one point when everything was in control, there were no signs of the UC acting up except my increasing fatigue. I had such mild inflammation,normally i'm a heavy bleeder, but this was so mild I hadn't noticed. During this point I my haemoglobin had dropped to a little below 50. My GI called me the next day stating he was getting a hospital bed ready for me. He did a scope and side the inflammation was so mild it was barely visible, he likened it to a "slow leak". I then spent a couple of days getting blood &iron transfusions to bring it up.

 

[lbligh]

There's also lactoferrin which can be used instead of iron pills. And B12 is also an important one to take if you are anemic.

Here's one study about lactoferrin: http://www.ncbi.nlm.nih.gov/pubmed/20407805