Anemia

[lookame]

I didn't know where to put this but I was curious if anemia is a common problem with crohns/uc. I'm starting on my second round of iron infusions in a year because I can't keep my iron up..I also can't stomach oral iron-it causes more diarrhea and it makes me have a worse stomach ache than usual.

 

[kikig]

Yep, I have anemia. I have protein losing enteropathy, which is the same wonderful family of Crohns/UC.
I think I am due for more infusions shortly, which I am dreading as it seems I am the 1% of the population who is intolerant to normal IV iron dosages.
If I need more iron, we have to quarter the dosage - like 100mg every week for 5 weeks instead of the normal 500mg in one go.
Oral iron doses don't work for me for the reasons you listed as well as the fact that I have chronic malabsorption issues.

 

[lookame]

I also have to do the weekly infusions instead of the one infusion. I don't mind going often since I was on Remicade. The iron only takes about an hr compared to the Remicade which took 4-6 hours (I had to do a slower infusion since I had issues.)

 

[brooklyn23]

Yup, anemia is a big problem. I had a problem with a few years back, though I contest that it was Crohn's related, I think I just had a hard time recovering from a blood donation. My doctor thinks otherwise.

 

[kikig]

@brooklyn23 - my GI is following a protocol (its Germany, life is full of protocols here) as regards my anemia. As it was not in his protocol to test my tolerance levels, I ended up in excruciating pain for 4 days after each infusion. Third time, I hammed up the crying and got his attention. Hopefully, it has worked (find out tomorrow!)

On the bigger picture side, it would not be a de facto course of action if it was not a common occurence. His practice specialises in Crohn's so all his patients have some flavour of Crohn's.

As per @lookame, I haven't seen too much mention of anemia on the forum, although I haven't specifically looked for any threads on it myself - keeping busy with all the other problems at the moment

 

[FrozenGirl]

Yep. I have had a total of 5 infusions in 2 sessions (once a week for 2 weeks one time and 3 weeks the other time). I suspect I am going to need another fairly soon. If you are loosing blood it is very common. I take oral iron but it isn't enough if I am flaring badly. I did go through a few brands to find an iron type that didn't make me really nauseous and increase d.

 

[HangryGinger]

I have problems with anemia as well. My GI just told me to take irons pills orally but Im terrible at remembering to take them and even when I do the iron levels barely raise at all. How low does your iron count have to be in order to have the iron transfusions?

 

[FrozenGirl]

I have problems with anemia as well. My GI just told me to take irons pills orally but Im terrible at remembering to take them and even when I do the iron levels barely raise at all. How low does your iron count have to be in order to have the iron transfusions?

Generally it needs to be below 10 (or 100 depending on what units). They also usually require that you are refractory to a trial of oral iron for at least 3 months. Unfortunately this means your GI may insist you find a way to remember to take them and see what happens before you get an infusion.

 

[lookame]

I have problems with anemia as well. My GI just told me to take irons pills orally but Im terrible at remembering to take them and even when I do the iron levels barely raise at all. How low does your iron count have to be in order to have the iron transfusions?

My iron dropped severely low to 6.9 after I delivered my daughter. I was referred to a hemetologist during pregnancy since my iron kept dropping as well. I was given my first round of infusions when my iron was around 8 and it was raised to 12 and I had a follow up with the intent to no longer need to see the hemetologist. At the follow up my iron was around 9.7 and it's been determined that I'll be seeing a hemetologist indefinitely unless the stomach issues even out. He basically said anytime my color drops I'll start the infusions again.

 

[ryanroks1]

My iron is 9.4 and I'm on 3 pills a day.

 

[HangryGinger]

That's really interesting. I know mine was 6.0 when I first started going to my current GI. I believe it's in the mid teens now. I'll have to ask next time I see her.

 

[kikig]

My GI confirmed my iron levels are holding their own right now, which is great news. Eventhough I am still feeling tired.
I must be going something correctly if I am now managing to hold iron in :dusty:
Next review is the end of April

 

[DEmberton]

I assume from the numbers people are talking about haemaglobin levels for measuring anaemia rather than iron. You can be iron deficient without being anaemic and that can cause tiredness and other problems like restless leg syndrome.

My Hg was down to 8.5 before surgery, and that's when they gave me two units of blood ( I felt so much better after that ). 3 or 4 months later I had to see the doctor again as I'd become unbelievably tired; I think it was down to B12 but he said my iron (ferritin) was low even though I wasn't anaemic - a healthy Hg of 15, and had me take tablets for another month. Unfortunately for the follow up they didn't bother checking iron or B12, just the normal full blood count, which seems to be the default test doctors reach for.

So really it's just like B12: they shouldn't be letting it get low enough to start causing problems like anaemia, but they do.

 

[Crohns08]

When I refer to iron I am usually talking Hg numbers. I have had a chronic problem with anemia while flaring. It's really awful how low they will let you go before they say something. They let me get down to 7.2 in the hospital while pregnant for a couple of days before even telling me. I was PISSED.

 

[JenS]

Yup I'm iron deficient too

 

[Fernando1]

Was diagnosed with Anemia, here is what the doctor said:

Start on b12 shots, once a week x 4 times. Then go with a once a month shot. Also take sublingual B12 every morning.

Take Ferritin (you can order through Amazon) along with Iron supplements. Ferritin enhances the absorption of iron. If you are going to have a colonoscopy you need to stop Iron a week before: it turns the colon walls black.

Take Folic acid pills, two a day.

Drink 2 Ensure bottles a day, this will round off the rest of your nutritional needs.

 

[Ann Morgan]

Yup, anemia is a big problem. I had a problem with a few years back, though I contest that it was Crohn's related, I think I just had a hard time recovering from a blood donation. My doctor thinks otherwise.

In the early 1990's I donated blood on a regular basis. I was also a vegetarian ( I did not take any vitamins or supplements ). Later on in life I had Iron Deficient Anemia. I took over the counter iron pills every day for quite a while. In May of 2009 my iron was so low that my doctor sent me to the hospital for a blood transfusion, as my hemoglobin was something like 5.6. I was admitted to the hospital overnight and given two units of blood. On a visit last year to my new Primary Care Physician he said that I no longer had to take the iron pills. So, I don't take them anymore. I see a lot of doctors and they do a lot of blood draws and so I know by all of those blood tests that my hemoglobin right now is in the acceptable level. What is an iron infusion ? I have never heard of that. When I took iron pills they made my stool real dark but I don't recall having diarrhea.

Thanks for listening. Have a good week.:hang: