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Posted 5/25/2008 4:48 PM (GMT 0)
I'm utterly confused and not doing well the last few days. I am anemic. I used to take OTC slow-release iron supplements about once every three-four days. I have not taken a pill in nearly three weeks, since before I began the colonoscopy prep.

I was really out of it when I spoke to the doctor after my colonoscopy. My mom was there and she thinks the doctor told me not to take iron with my Sulfasalazine. The doctor definitely said treating my UC will help prevent future anemia.

I have an appt with my doctor on June 2. I was trying to eat lots of iron-enriched foods and take a multi-V that had some iron in it (but definitely not as much as I took in the past.)

But I am just feeling so horrible. I've been blacking out when I stand up, almost passing out. My vision goes away for about 10 seconds. I have a massive headache, which I'm positive is related to iron because that's how I feel when I start to need iron. I have all the other symptoms too: lack of concentration, shortness of breath, etc etc.

In short, I really need to take an iron pill. But I'm not sure if I can. This is what the Sulfasalazine drug interactions facts state:

Iron and sulfasalazine have a tendency to bind to each other in the digestive tract. As a result, the simultaneous ingestion of both substances can lead to decreased sulfasalazine absorption, decreased iron absorption, or both.) Since sulfasalazine may reduce the absorption of iron from dietary sources supplementation may be appropriate. However, individuals taking sulfasalazine should not begin supplementation with iron before consulting with their prescribing physician, pharmacist, and/or nutritionally trained healthcare professional. In any event, if iron supplementation is undertaken, no iron-containing products should be taken two hours before or after sulfasalazine. so as to minimize the potential interaction

It's a holiday weekend so I can't speak to my doctor until at least Wednesday (because he does surgeries on Tues.) I really can't wait that long.

I can definitely space the iron pill out so I take it three hours before and after the Sulfa. So my question is...can I take the iron pill today at 3:30pm if I took my last Sulfa pill at 12:30pm and my next will be taken at 6:30pm?
Posted 5/25/2008 5:53 PM (GMT 0)

I wish I knew the answer for you, but I dont.  I just think that your symptoms sound like you need something right away.  Is there an emergency on call Dr for weekends?  Is your Dr part of a group where you could call and speak to another Dr?  Severe anemia is nothing to take lightly.  If your hemoglobin levels get to low it can be very serious.  I recommend calling your Drs office and see if it has an answering service that can advise if a Dr is on call.  If not then call first thing Tues morning and ask to speak with a nurse or someone other than front desk staff.  Even if your Dr is in surgery all day someone may be able to answer your question.

Posted 5/25/2008 8:11 PM (GMT 0)
I just went to the pharmacist, and though I'd stumped him and he skirted around all the options, he basically told me to take the iron and the worst case scenario is that it will make both drugs inactive. If that happens, and I don't feel better, I should call my doctor, which obviously I can't do until after the holiday anyway (I think I can call the surgical center on Tuesday at the very least.)

I have plans tonight, and I'm afraid to make the Sulfa inactive and then be stuck in the bathroom all night, especially since there's a long subway trip without hope of a bathroom.

So I am going to try to stick it out tonight, maybe eat a steak even though it probably won't help, and then take the pill tomorrow where I can stay in the apt all day if the Sulfa pills stop working. I think I can also space it out so I have four hours between the Sulfa pills and the iron, which might be better since the iron is slow release.
Posted 5/26/2008 6:30 AM (GMT 0)
I don't have the answer for you, either.  I do know that you should take Vitamin C along with your iron to help its absorption.  I was slightly anemic when I was diagnosed with UC and have been taking iron twice a day since then.  But due to other issues since then, I now have to take Aranesp (once a week injection) to help keep my hemoglobin level up and make new red cells.  When I was in the hospital last fall, my hemoglobin had dropped to 6.9!  It's now in the normal range most times I have it checked.

Posted 5/26/2008 2:23 PM (GMT 0)
Kasey,
Sore_guts asked some good questions about reaching your doctor. If you call your doctor's office, won't you get an answering service that can reach him/her in case of an emergency? Blacking out and losing your vision would seem to count as good reasons to contact the doctor on a holiday weekend.
Posted 5/26/2008 4:11 PM (GMT 0)
I agree with sore_guts and julee. Try calling your doctor and if you can't reach him/her, go to the emergency room. Blacking out and losing your vision are not good! I needed two blood transfusions last summer and I wasn't even having as bad as symptoms as you are!
Posted 5/26/2008 5:23 PM (GMT 0)
Just another quick thought -- I have a feeling that many of us (me included) assume that all of our symptoms are related to UC. Vision problems and black-outs could be checked out by a neurologist at the hospital to verify that the symptoms really are UC-related.
Posted 5/27/2008 2:06 AM (GMT 0)
I actually get this blacking out thing a lot. It happens when I go from laying down/sitting to standing. My vision goes away for about 10 seconds and everything turns black and then it slowly starts to come back.

I wasn't taking iron everyday, so I would wait until I started getting the blackouts as an alarm for when I should take the next supplement.

Last night was just awful. I had a horrible time standing on the subway, and then when I got home around 8pm, I couldn't keep my eyes open, so I just kept going through cycles of sleeping and waking until it was time to take my last Sulfa pill, and then I couldn't fall asleep for hours.

But weirdly...as far as colitis goes...yesterday was major progress. I had fully formed BMs all three times I went. That hasn't happened in months. Today they were back to loose though.

And then I felt slightly better today. I haven't had the black out all day. My head was clear. I tried to be more active and maybe that helped, maybe laying around all weekend was bad.

I didn't think it might not be UC/iron related. Thanks for pointing that out. Another fun thing to look into!

I did try to call the doctor today. I got the emergency service, and like the mature person I am, immediately burst into tears and hung up. I couldn't bring myself to call back, I convinced myself this was all in my head. I felt awful about potentially ruin his long weekend.

So I'm going to call tomorrow morning and try to get an appt for tomorrow afternoon and see what he says. Or at the very least, actual doctor permission to take the iron supplement with the Sulfa.

I'm still trying to get used to all these pills and how they affect me and having to rely on doctor's for everything. I ahve so many questions! Like what happens next week when I get my period and have cramps? Normally I take prescription naproxen for my cramps. And I take it first thing in the am. Can I take that with the Sulfa? Just so many questions like this, so I think it will be good to have the appt a week early anyway. I feel like I was thrown into this without much guidance, groggy from anesthesia and sent on my way with only a photo of my colon and a prescription for the Sulfasalazine. I wish I had a consult planned for the next day or a fact sheet or even a pamphlet. I'm a lost sheep.

Thanks for all the help.
Posted 5/27/2008 11:15 AM (GMT 0)
I'm pretty anemic also, even when I am in remission, my levels drop into the 12's. I cannot imagine how terrible you must feel. I hope you feel better soon.
Posted 5/27/2008 11:15 AM (GMT 0)
I'm pretty anemic also, even when I am in remission my levels drop into the 12's. I cannot imagine how terrible you must feel. I hope you feel better soon.
Posted 5/27/2008 2:53 PM (GMT 0)

I know how you feel about calling the Dr.  I have actually cried on the phone too.  Especailly when not feeling well.  It is just so overwhelming to be sick then have to call and go thru several people before you get someone who understands and can offer help or advice.  Is there someone close to you who can call for you?  It may be really helpful to get someone else to do it for you so they can be persistent for you.  Actually, now the holiday weekend is over so maybe you've already gotten through?

Blacking out is very serious and really please do not feel it is all in your head or not worth a call to the Dr - they are in this profession and expect situations to arise.  If its due to anemia that is very serious.  You could black out and fall and hit your head causing more injury.  Or if your hemoglobin levels get to low you could have a heart attack.  Also it could be due to something else - maybe your meds?  Are they new?  Or due to something else entirely.  I'm not trying to scare you I just hope you get help and start feeling better soon - you deserve it - we all do.

Posted 5/27/2008 4:53 PM (GMT 0)
Yeah the meds are new. I've only been on them two weeks. I didn't seem to have any other side effects until very recently.

I was really lightheaded and dizzy on my commute today, the escalator was scary as I was really shaky and feared I might fall, so I held on tight to the rail and took frequent breaks while I walked. The thought did occur to me that I could pass out and really hurt myself, which wasn't comforting, so I'm glad you confirmed my fears since again, i thought I was overreacting. I'm having trouble focusing at work today. Feels like I'm looking at the world through a foggy lense. Almost like I'm a bit drunk, but not totally intoxicated (and no, I haven't had any alcohol.) No black outs so far though.

I'm also having weird cravings today, not like pica, but almost iike nothing I eat is satisfying the craving, like I want something but I can't figure out what it is or even if it's salty or sweet, sour or bitter. But the craving is still intense.

I called the doctor this morning, but like I already knew, he's in surgeries. The nurse took down my symptoms and my phone number and told me he'd call back later this afternoon. So now I wait.
Posted 5/28/2008 1:09 AM (GMT 0)
Update: well, I'm stuck in the same spot. Dr told me not to take iron until he can see me. Unfortunately, that's not until Friday. (I don't have a car, so I can't get to the secondary offices.)

I'm still feeling the same, nothing has changed. I have leg cramps, the kind that feels like restless leg syndrome.

I now have a RX for a multi-v called Strovite which has 1MG folic acid. Has anyone used these? They don't have iron though and my other multi-v had iron in it but much less folic acid. I'm not sure if these will make me feel better or worse, but I'll try it and see how it goes.
Posted 5/28/2008 1:14 PM (GMT 0)
KaseyF: After i was first diagnosed i became very anemic. I tried to take Iron Pills and it made me really crampy. They suggested i take Iron Infusions. I went 1-2 times a week for 10 weeks. It restored my iron levels to normal. I was pretty anemic when they suggested this. i had the same symptoms you seem to have too. Ask your doctor about doing iron infusions.
Posted 5/28/2008 6:55 PM (GMT 0)
I was told to have a multivitamin with iron.

Anemia isn't always from an iron deficiency. Are you taking folic acid? Sulfasalazine prevents folic acid from being absorbed by the colon. So, if you are taking sulfasalazine you should be taking folic acid. I was told to take one milligram for every gram of sulfasalazine.

Hope this helps. You shouldn't let this go. You should not feel like blacking out. Call your doctor ASAP.

M
Posted 5/28/2008 8:31 PM (GMT 0)
Thanks everyone. My doctor didn't prescribe folic acid which really upset me after coming here. This is something I'm definitely going to talk about at my appt. My dad (a doctor, but not a GI) was worried so he prescribed me the Strovite vitamins that have 1 MG of Folic Acid, but I figure I might as well just wait to get my doctor's approval before I take them. Or else, maybe I need a second doctor's opinion.

I will also ask about the iron infusions, that sounds like an itneresting solution.

I feel like every day I rack up a new symptom on my check-list. Last night I was awoken in the middle of the night with a horrible calf cramp, the kind that makes you scream in pain, and now my calf is very sore. I used to get these when I was dehydrated in college (from drinking too much) but I am definitely not dehydrated right now, I am monitoring my water in take with a water bottle that marks ounces, and I've been drinking more than 80oz a day.
Posted 5/28/2008 9:46 PM (GMT 0)
You can buy folic acid over the counter. It is usually pretty inexpensive. Just go to any drugstore.

M
Posted 5/28/2008 10:04 PM (GMT 0)
Out of curiosity, I googled anemia and leg cramps. Apparently, anemia can cause leg cramps.

Kasey, I hate to sound like a broken record, but I don't think you should wait until your appointment next week. Call your doctor now. You are experiencing symptoms of severe anemia and should not wait. There are things that can be done for right away. Why wait a week?

M
Posted 5/28/2008 10:46 PM (GMT 0)
I'm going to the doctor Friday! It's the first time I could get to him since he has multiple offices and I don't have a car. But Friday is better than Monday.

I had blood in my stools again today, so I'm thinking there's still some bleeding in there I haven't been noticing.

I know I need to see the doctor asap. Esp because my menstrual cycle will begin as early as tomorrow, and I'm afraid what all that blood loss will do to me. Usually I am a mess the first two days of my period.

Hmmm....I went to the drug store and couldn't find over the counter Folic Acid that wasn't in a multi-v. Maybe if I go to a place like GNC?

(And yeah, I know that the anemia can cause leg cramps. I've been researching a lot so I am hyper-aware of all the symptoms. And pretty much, I have them all. But then again, what if I'm diagnosing myself wrong?)
Posted 5/29/2008 12:36 AM (GMT 0)
I've gotten folic acid at CVS and at Duane Reade in New York. Sometimes it is under the B vitamins (when they have the vitamins alphabetically). You should ask the pharmacist, but in any event I'm sure you can get in at GNC.

M
Posted 5/29/2008 2:15 AM (GMT 0)
Folic Acid is B-9. It is available at GNC 100 1000mcg tablets is less then 5 dollars-cheaper than the perscription ones I got at CVS. It is also sold in most grocery stores in 400mcg size but that is probably not enough for you.
Your body needs folic acid in order to produce red blood cells so your iron won't help you much if you are not getting enough folic acid and as others have pointed out with the meds you are taking you need more than most people. You also will probably need to take iron that is not slow release to keep it from interfering with your other meds. Ask your doctor for a recomendation as to formula but I like vitronC. It isn't ferrous sulfate which upsets my stomach. It does contain vitamin C which your body needs to absorb iron.
Sj
Posted 5/29/2008 2:53 PM (GMT 0)
Aha! That's why I couldn't find Folic Acid. I didn't think to check for B-9 (and I am very shy so it's hard for me to ask a pharmacist's help, just like it waas hard to call the dr.)

I prefer ferrous sulfate iron to other kinds. I find this works better for me. It never hurts my stomach, but I do take it in slow release for (or I used to anyway.)

I will venture to the pharmacy again today and see if I can locate Folic acid. I'm going to hold off on the iron until I take to my doctor. Kind of hoping for hte injections instead because they sound like they may help me more.
Posted 5/29/2008 9:32 PM (GMT 0)
I found Folic acid 400mcg and 800mcg. I bought both.

Together with my multi-v (which has 400mcg), I can have 800mcg or 1200mcg. Which do you think is better? 1200 too much, or okay?

I think the cvs I went to last time was seriously lacking in these pills! This new one I went to had 10 times the selection. I didn't see any B-9, but I did see plain old Folic Acid.

ETA: also, should I take the folic acid WITH the Sulfa or at a different time?
Posted 5/29/2008 11:55 PM (GMT 0)
I take prescription folic acid, 1 mg per day, per Doc's orders. I asked the pharmacist about getting it over the counter instead of prescription. He said I would have to take 2 1/2 of the 400 mcg to equal the 1 mg (prescrip). He ended up telling me it's cheaper to get the Prescrip folic acid and pay for it without going through my insurance. My co pay was $10.00 for a month supply (30) and he was able to give me 65 for $10.99. Worth checking out if you are going to get a prescription for Folic Acid filled. I'm curious to see how much folic acid your Doc prescribes, if he does, which if he knows his stuff, he will give you a scrip for it.

I take my folic acid in the morning with my Sulfasalazine and supplements, wasn't told not to. Kasey, are you feeling better from the meds? Hope so.
Posted 5/30/2008 12:57 AM (GMT 0)
Thanks for thinking of me! I just took the 400mcg of Folic Acid, so I've had a total of 800mcg today. I'll see how that goes. And I'm going to my doctor tomorrow morning. I will definitely ask about the prescription for folic acid at my pharmacist (and my doctor.) I still have those Strovite rx vitamins, but I haven't taken them yet because every single vitamin is multiplied exponentially in them.

Kasey, are you feeling better from the meds? Hope so.
In terms of UC, I am mostly feeling better. I'm still losing weight, which is okay except I really need all new pants. But I'm having only 3 (never less, sometimes more) BMs a day and lately they have been solid about 20% of the time, which is better than nothing. I have had bleeding though the last two days. Also, while the pills are still a bit difficult to swallow and get stuck for a brief moment in my throat everytime, I'm much less afraid of them now which does make swallowing them easier.
So in that sense, things are really improving. All my current issues are because of anemia (I think, diagnosing myself.)

I'm actually hoping taking this folic acid pill will make me feel a bit better. I wonder if I've been feeling so bad lately because of lack of iron or because I'm not taking folic acid with the Sulfa.

I'll update tomorrow after the dr.
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