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yourmajesty
Regular Member


Date Joined Mar 2007
Total Posts : 75
   Posted 1/9/2008 11:33 AM (GMT -7)   
Hello all! Well, what a way to start the new year...and I even tried to convince myself that it was going to be better than the last two! Well, I am having some iron through IV again! Which I really hope helps me out. I've had it before and it did then, so I thinking it will.  I got a flare in Oct/Nov.  tried to deal with it, until I couldn't take it anymore.  Went to the dr. and am back on the entocort.  Well, then i started to feel horribly tired and headaches....etc.  Finally had the iron/ferritin levels checked....very low! So, hence the iron IV...can't handle it digestively, have tried them all.  Well, anyways, just curious if anyone has gone through this ordeal, and if willing to share, what there levels were at, cause mine were really low!
It sucks to have the disease, which can ware you down itself, but to have the low iron/hemo sucks even more!  Well, I am staying positive over here, cause I am determined to make this year better!  Second treatment on Friday...yippie!
Tara
30 yr female
1995-Crohns disease (removal of the terminal illeum and Cecum-followed by resection)
on and off flare ups/inflammation
1998-Duodenal ulcers(bleed out 1998/2005-blood transfusion)
2006-Anemia ( 2 Iron IV treatments) 
meds-30mg prevacid, taking entocort briefly to satisfy my dr because he doesn't want to see me in the operating room! Other than that....It's day to day for me!!


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 1/9/2008 11:49 AM (GMT -7)   
Well I have splits on the sides of my mouth where my lips meet and my GI said it was from low iron. But my labs (over 6 months old) said my iron was fine. He said Im not low enough for IV but to up it in my diet. He also warned me not to try straight iron pills b/c they are bad on the gut. So I am taking my multi-vitamen more religously (which has 100% DV of iron) and they are healing much faster. Sorry I dont have hard numbers to give you.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


yourmajesty
Regular Member


Date Joined Mar 2007
Total Posts : 75
   Posted 1/9/2008 11:57 AM (GMT -7)   
What sucks for me, is that I have a hard time digesting any kind of vitamin! I am glad I can take my meds, but other wise...that's about it.  My Iron % Saturation was a 3 and it should be in the range of 25-55.  And my actual iron was 13 which should be in a range of 55-80.  So, I was feeling pretty dumpy! But, I see blue skies! My last Iv treatment was in july of 06, I think I am going to ask my dr to monitor my iron levels a little better.  It can be hard to tell whether I am low on iron, or just plain tired from the disease itself! 
31yr old female
1995-Crohns disease (removal of the terminal illeum and Cecum-followed by resection)
on and off flare ups/inflammation
1998-Duodenal ulcers(bleed out 1998/2005-blood transfusion)
2006-Anemia ( 2 Iron IV treatments)
2008-More Iron IV treatments 
meds-30mg prevacid, taking entocort briefly to satisfy my dr because he doesn't want to see me in the operating room! Other than that....It's day to day for me!!


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 1/9/2008 12:50 PM (GMT -7)   
Yeah. I have issues w/ vitamens you swallow too. The only one I have tolerated well so far is the Centrum chewable. Even then I have to take it with my dinner or else it makes me sick. I can't handle them in the morning or on an empty stomach. Occasionally I will still get very mild naseau from them but I know my body needs it so I will put up with it for now.
26 Year old married female.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  Currently on Pentasa 4 pills/4x day, hysociamine prn, nexium, and ortho evra.  Good times!!!
 
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 1/9/2008 10:28 PM (GMT -7)   
Tara,
 
Those are really low scores. Glad you are getting the IV. In a case like yours, it is needed. On an onging basis, you are probably going to have to figure out how much iron you need to supplement a day. The only way to do so is by trial and error, with lab tests to corroborate how you are doing.
 
Do not take the iron in a multivitamin. This does not help it be absorbed better. In fact, the opposite is true. Things like calcium in your multi will interfere with iron absorption. GIs are worried about iron supplements irritating the gut, but whether iron will irritate the gut or not has nothing to do with whether it is or isn't in a multivitamin.
 
I'd be happy to email you an article from a medical journal that discusses how Crohn's patients should receive iron supplementation.
 
The best way to take iron is straight. My daughter takes 25 mg of iron a day with orange juice...the vitamin C helps the iron be absorbed. She does not eat food when she takes the iron, because food interferes with absorption of iron. She also does not take iron any sooner than two hours after taking another med, vitamin or food, or one hour before eating. Because even food, meds, or vitamins (like calcium) taken less two hours earlier could interfere with iron absorption.
 
My daughter has done systematic trial and error of lab tests to figure out how much iron she needs on a daily basis. She tried taking the 25 mg 5 out of 7 days, or every other day, etc. The only thing that works to keep her iron up is taking it every day. 25 mg is a low dose, but it does build up.
 
The duodenum is where iron is absorbed by the body, so if you had problems in that area, then you might have more trouble absorbing iron.   
Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivit, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. Off SCD diet but wheat was iffy so back on SCD modified to include potatos and rice.   


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/10/2008 10:35 AM (GMT -7)   
My anemia was so bad a few months ago that I was getting dizzy a few times a week, my PCP put me on 325mg iron supplement 3x per day, then my GI lowered that to 2x per day. It has made a huge difference in my blood tests and I have more energy now. Luckily I don't have a problem taking or digesting vitamins or supplements, so I also take a daily multi-vitamin plus a separate calcium supplement. It has worked wonders for my appearance and stamina, I have a lot more energy now.
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)


yourmajesty
Regular Member


Date Joined Mar 2007
Total Posts : 75
   Posted 1/10/2008 1:38 PM (GMT -7)   
:-)  
Thanks njmom, for your input! Any information is good information as far as I'm concerned. 
I wish I could even take just iron(orally), but I am one of those rare birds, and just can't handle it.  I have duodenal ulcers, which is why I take prevacid every day, and even with that, I just can't stomach the dang iron pills, even the slow fe.  I don't know if it's because of my duodenal having sooo much scar tissue from the ulcers that makes it hard for me...not sure, just know that I can't do it. And I hate suffering through it...it sucks!  I take what I can, and watch everything else. 
I plan on talking with my Dr. about having my levels checked more frequently.  Before, I thought that your hemoglobin had to be low in order for the iron to be, which is not so.  Even though my hemo is never at the normal range.  But as long as it is above a 9, that's good, maintaining 11 is even better! 
Thanks again...luv the feedback!
31yr old female
1995-Crohns disease (removal of the terminal illeum and Cecum-followed by resection)
on and off flare ups/inflammation
1998-Duodenal ulcers(bleed out 1998/2005-blood transfusion)
2006-Anemia ( 2 Iron IV treatments)
2008-More Iron IV treatments 
meds-30mg prevacid, taking entocort briefly to satisfy my dr because he doesn't want to see me in the operating room! Other than that....It's day to day for me!!


way2tired
Regular Member


Date Joined Nov 2007
Total Posts : 68
   Posted 1/11/2008 12:14 PM (GMT -7)   
 hi....believe me I understand...I hate being anemic, thats how I found out I had crohns, I was getting headaches and was tired thought it was just the job and everything did my blood my hemoglobin came back 6 my boss who is a doctor looked at me like I had two heads...made me redo it. Then did the other test found out it as crohns but two years later still amenic haven't had a normal count yet last count was an 8 and ferritin level was at 2. Taking chromagen iron tablets and now am also on endocort aside from the pentasa....But I think that I have been like this so long my body has adapted to it in ways...I function just need to learn to pace myself, I think if I ever reach at least 10 I'll do cartwheels..hahaha..
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