Iron Defiency Anemia

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bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 4/26/2009 9:58 PM (GMT -7)   
Hey everyone.  I have a question.  I have cronic iron deficiency anemia due to bleeding internally b/c of Crohn's disease.  I see a hematologist because my hemoglobin is around 6.9.  Very, very bad.  Anyway we tried oral iron to no avail since i'm losing it faster than i'm absorbing it.  It also doesn't help that about 9 months ago I had a small bowel ressection where they took a foot of my small intestine which everyone here knows is where all nutrients are absorbed including iron.  My hemotologist told me we should start intravenous iron infustions once a week for the next eight weeks.  If in eight weeks there is no improvement I need to do it longer and also possibly receive a blood transfusion.  I've had one before due to the anemia and I had a slight reaction to the blood.  I got a rash and hives on my face.  I'm wondering what to expect from the infusion. Anybody done this.  What was your experience, side effects, ect..  Thank you .

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/27/2009 6:18 AM (GMT -7)   
Very easy procedure. You go in, they hook you up to an IV, give you a test dose to make sure there are no reactions, and if none give you the rest of the iron. Mine took about 4-5 hours to do, and within about 3 weeks I could feel the difference. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Dave D
Regular Member


Date Joined Aug 2005
Total Posts : 404
   Posted 4/27/2009 6:37 AM (GMT -7)   

I have been plagued for years with chronic anemia. I routinely get iron infusions and blood infusions. Although there is a chance of reaction with a iron infusion, the odds are slight. It will take 2-3 days before you will notice any relief, unlike a blood transfusion and be prepared to spend a good 1/2 day or longer to get it.

Several months ago I began passing a lot of blood, about 1/4 cup each time. Within 24 hours, my hgb dropped almost 2 pionts from 9 to 7. I had been down to 5.9 before but that was over a long period of time and my body had time to adjust. This time it was too much too fast. It took 2 units of blood, followed a week later with 2,000 ml of iron to get me back so in order to prevent this from happening again I have established the following plan: Stop bloody diarrhea before you lose much blood with Pepto Bismo. Take 3 dose cups then wait to see if that stops it then wait until the stools turn from black to the natural color. Don't allow yourself to get down.

Easier said than done.

Dave D 


Grandpa Dave is 70.
IBD since 1977
Perforation and resection 1993
Diagnosed as Ulcerative Colitis 1994
Received J-Pouch 1997
Diagnosed as Chron's 2004
Redo, resection, and remove camera capsule 2005
Unsucessfully tried LDN 2007
Contracted Scleritis of the Eye 2008
Four Grandkids
Older than dirt


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/27/2009 7:05 AM (GMT -7)   
Hi, I recently had a few blood transfusions due to being very aneamic i never had any side affects and felt the benefit from it with in a few days. (God what would we do without these wonderful people who donate their blood.) now on liquid iron (Sytron) which absorbes better into the body. hope all goes well for you.  Bevx

hsmom
Regular Member


Date Joined Oct 2004
Total Posts : 35
   Posted 4/27/2009 8:38 AM (GMT -7)   
I had 5 iron iv transfusions over a two week period in Jan. They used venofer(sp?) iron and it only took about an hour to do each one and only seemed to cause a few headaches at first but other than that really helped. Had 2 units of blood the week before that as my hemoglobin was 5 something. After the blood it went to 8 and after the iron it went to 11 something. Then in March had two emergency surguries and had to end up having 5 more units of blood.

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/27/2009 9:17 AM (GMT -7)   
I have been getting iron infusions now since December ever week still but i lost a great deal of bowel and get frequent blood transfusions at first the will give you a small dose to make sure you don't have a reaction to the iron and if not they will continue with the rest of your dose,you are not going to feel better right away its going to take some time was that your first bowel resection how much did you say that they took from you? I go over to medical day ever Monday at 8 and register than go up stairs for my infusion it takes till around 11am and I'm out the door for another week.Good luck with your treatment Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/27/2009 10:28 AM (GMT -7)   
It seems that most people here get small venofer infusions over a number of weeks. When I went they did like 2 or 3 hours at a time and I reacted badly. I wonder if I just need smaller infusions.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 15mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 4/27/2009 11:06 AM (GMT -7)   
thanks a lot guys for all your help. i go tomorrow for my first infusion. hopefully all goes well. again thanks a lot

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/27/2009 9:05 PM (GMT -7)   
Good luck Bella in the morning on your first infusion i'm sure it will go well for you. Best wishes Jenn smilewinkgrin
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 4/30/2009 8:27 PM (GMT -7)   
Hey onthecan (love that user name by the way) I went for my infusion on tuesday and all went extremely well. no neasea or headaches. everything went well. hopefully it will start working. my hemotologist wants my bone marrow to start working on it's own. i go for my second infusion on may 11. hopefull it will be smooth sailing. thanks everyone again for all your help and info. hope everyone feels better tomorrow than they did today.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/30/2009 8:31 PM (GMT -7)   
How many mg's of venofer did you get?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 12.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Linn
Regular Member


Date Joined Jul 2008
Total Posts : 118
   Posted 4/30/2009 8:44 PM (GMT -7)   
Before I left for medical school, my hematologist tanked me up with an InFeD infusion (iron dextran). He said he prefers these because you can use them much less frequently, and they work well to maintain iron stores over long periods. How awesome did it make me feel? It's been soooo many years since I had color in my lips because of the anemia. Now I can get flushed when I go outside, my nailbeds are pink, and I'm not constantly looking as though I'm about to faint.

I haven't had a hematocrit above 27 since I was 18 or so, and oral supplements were just not cutting it. I had so many blood transfusions in college and graduate school that I have honestly lost count--getting the problem under control with the iron dextran has been such a relief, and its so great to not have to think about taking the pills and dealing with the side effects of the oral Fe therapy. There was one instance where I wasn't even having a flare and my hematocrit dropped to 17--and I was so busy trying to do well in school that I just chalked the fatigue up to studying like crazy. My body was doing okay compensating, but when the blood test came back the resident on call FREAKED, tracked me down on campus, sent an ambulance to pick me up, and made me stay in the hospital over night. The moral to this story is that now my hematocrit is 35--its literally double what it was back then! get on the InFeD. You'll be sooo glad you did.
25-year old Crohny, dx'd at 16.
Deferred medical school till January 09 because of most recent flare

Currently take:
Tysabri
Cipro 500 mg bid
Flagyl 500 mg bid


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 5/1/2009 7:52 PM (GMT -7)   
i'm on venofer infusions instead of the infed because there is such a high rate of a really bad reaction. i was diagnosed 7 years ago when i was 21 with crohns. since then i've been on every med except methotrexate and tysabri because of the high rate of a brain infection that can cause you to die. won't even try that. none of my docs even recomment that drug. if a gastro doc tells you not take the drug i don't take it. anyway i recently had a small bowel ressection and a temp ileostomy. was doing well then 7 months after reversal we did a colonoscopy and found at the crohns was back and active at the reconnection site hence the losing of blood again. my blood count was 6.9. so we did venofer and so far so good. thank god for something good. god knows i've been through a lot. thanks everyonr. feel good.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/1/2009 8:42 PM (GMT -7)   
bella3250 said...
i'm on venofer infusions instead of the infed because there is such a high rate of a really bad reaction. i was diagnosed 7 years ago when i was 21 with crohns. since then i've been on every med except methotrexate and tysabri because of the high rate of a brain infection that can cause you to die. won't even try that. none of my docs even recomment that drug. if a gastro doc tells you not take the drug i don't take it. anyway i recently had a small bowel ressection and a temp ileostomy. was doing well then 7 months after reversal we did a colonoscopy and found at the crohns was back and active at the reconnection site hence the losing of blood again. my blood count was 6.9. so we did venofer and so far so good. thank god for something good. god knows i've been through a lot. thanks everyonr. feel good.


Hey Bella, do you know how many mg's of venofer you got? If not, how long did it take?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 12.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/1/2009 11:48 PM (GMT -7)   
bella3250 said...
Hey onthecan (love that user name by the way) I went for my infusion on tuesday and all went extremely well. no neasea or headaches. everything went well. hopefully it will start working. my hemotologist wants my bone marrow to start working on it's own. i go for my second infusion on may 11. hopefull it will be smooth sailing. thanks everyone again for all your help and info. hope everyone feels better tomorrow than they did today.
Hi Bella glad to hear that you got along great i knew you would how long did it take for your infusion 3 or 4 hours and do you have to go first thing in the morning mine are always at 7:00am and i'm not a morning person by all means. So what is going on with your bone marrow? Thanks for the compliment on my user name i thought it was appropriate for the site being that is were we spend the majority of our times. Feel better soon Bella. Your Buddy Jenn AKA onthecan smilewinkgrin

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 5/2/2009 10:14 PM (GMT -7)   
hey rider fan i'm not sure of the dosage of the venofer.  i did my first infusion last tuesday and since it was my first one it took about 4 hours but the nurses said the next dose will only be an hour to an hour and a half.
Rider Fan said...
bella3250 said...
i'm on venofer infusions instead of the infed because there is such a high rate of a really bad reaction. i was diagnosed 7 years ago when i was 21 with crohns. since then i've been on every med except methotrexate and tysabri because of the high rate of a brain infection that can cause you to die. won't even try that. none of my docs even recomment that drug. if a gastro doc tells you not take the drug i don't take it. anyway i recently had a small bowel ressection and a temp ileostomy. was doing well then 7 months after reversal we did a colonoscopy and found at the crohns was back and active at the reconnection site hence the losing of blood again. my blood count was 6.9. so we did venofer and so far so good. thank god for something good. god knows i've been through a lot. thanks everyonr. feel good.


Hey Bella, do you know how many mg's of venofer you got? If not, how long did it take?


bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 5/2/2009 10:17 PM (GMT -7)   
hi jenn the first infusion took about 4 hours but the nurses said from now on it should only be about an hour to an hour and a half.  my bone marrow basically considered dry.  it's over working to compensate for the low blood count.  the hope is the infusions will start making my body make enough blood on it's own so not to draw from the bone marrow.  feel better.
onthecan said...
bella3250 said...
Hey onthecan (love that user name by the way) I went for my infusion on tuesday and all went extremely well. no neasea or headaches. everything went well. hopefully it will start working. my hemotologist wants my bone marrow to start working on it's own. i go for my second infusion on may 11. hopefull it will be smooth sailing. thanks everyone again for all your help and info. hope everyone feels better tomorrow than they did today.
Hi Bella glad to hear that you got along great i knew you would how long did it take for your infusion 3 or 4 hours and do you have to go first thing in the morning mine are always at 7:00am and i'm not a morning person by all means. So what is going on with your bone marrow? Thanks for the compliment on my user name i thought it was appropriate for the site being that is were we spend the majority of our times. Feel better soon Bella. Your Buddy Jenn AKA onthecan smilewinkgrin


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 5/3/2009 9:37 AM (GMT -7)   
bella3250 said...
hey rider fan i'm not sure of the dosage of the venofer. i did my first infusion last tuesday and since it was my first one it took about 4 hours but the nurses said the next dose will only be an hour to an hour and a half.


Rider Fan said...



bella3250 said...

i'm on venofer infusions instead of the infed because there is such a high rate of a really bad reaction. i was diagnosed 7 years ago when i was 21 with crohns. since then i've been on every med except methotrexate and tysabri because of the high rate of a brain infection that can cause you to die. won't even try that. none of my docs even recomment that drug. if a gastro doc tells you not take the drug i don't take it. anyway i recently had a small bowel ressection and a temp ileostomy. was doing well then 7 months after reversal we did a colonoscopy and found at the crohns was back and active at the reconnection site hence the losing of blood again. my blood count was 6.9. so we did venofer and so far so good. thank god for something good. god knows i've been through a lot. thanks everyonr. feel good.



Hey Bella, do you know how many mg's of venofer you got? If not, how long did it take?



Thanks. Would you be able to find out next time and let me know? It might be useful information for me. Thanks.
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 12.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!

Post Edited (Rider Fan) : 5/3/2009 1:10:59 PM (GMT-6)


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 5/3/2009 11:48 AM (GMT -7)   
bella3250 said...
hi jenn the first infusion took about 4 hours but the nurses said from now on it should only be about an hour to an hour and a half.  my bone marrow basically considered dry.  it's over working to compensate for the low blood count.  the hope is the infusions will start making my body make enough blood on it's own so not to draw from the bone marrow.  feel better.
onthecan said...
bella3250 said...
Hey onthecan (love that user name by the way) I went for my infusion on tuesday and all went extremely well. no neasea or headaches. everything went well. hopefully it will start working. my hemotologist wants my bone marrow to start working on it's own. i go for my second infusion on may 11. hopefull it will be smooth sailing. thanks everyone again for all your help and info. hope everyone feels better tomorrow than they did today.
Hi Bella glad to hear that you got along great i knew you would how long did it take for your infusion 3 or 4 hours and do you have to go first thing in the morning mine are always at 7:00am and i'm not a morning person by all means. So what is going on with your bone marrow? Thanks for the compliment on my user name i thought it was appropriate for the site being that is were we spend the majority of our times. Feel better soon Bella. Your Buddy Jenn AKA onthecan smilewinkgrin

Hi Bella sorry to here about your bone marrow i hope this infusion works well for you and you can get your life back on track. Well Wishes Bella.  Jenn smilewinkgrin

Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.

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