Iron injections vs. Iron infusions?

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Cat-a-Tonic

Cat-a-Tonic

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I've been dealing with iron deficiency anemia since March of this year due to on-again off-again rectal bleeding (the bleeding has been due to recurrent internal hemorrhoids). Just got my most recent bloodwork results back today and I'm still anemic. (Results are below.)

My GI had said that if I'm still anemic, he'd have me do something like iron injections or infusions. I'm just wondering what the difference is, if any, between injections and infusions. Is one preferable to the other? Any pros or cons to either method? I googled but couldn't find a lot of info comparing or contrasting injections vs infusions. My main symptom from the anemia seems to be fatigue/exhaustion, so I'm looking for the best way to get rid of that. Any input would be greatly appreciated. Thanks guys!

My bloodwork results:
Ferritin (standard range 5 - 204 ng/mL) - my result 4 ng/mL
Iron (standard range 50 - 175 ug/dL) - my result 30 ug/dL
Total Iron binding capacity (standard range 250 - 450 mcg/dL) - my result 584 mcg/dL
% Saturation (standard range 16 - 50 %) - my result 5%
Transferrin (standard range 180 - 382 mg/dL) - my result 467 mg/dL
 
My daughter has had infusions but not injections. In her case, her pediatrician said they didn't use iron injections anymore because they were painful. I guess that must just be for peds patients?

Anyway, her infusions worked great. They was very easy and took about an hour. She had four or five infusions and felt better immediately after them - less fatigue and not as pale. She hasn't had any issues with her iron levels since then, and it's been a couple years.

Good luck!
 
Thanks, Maya, that's very helpful! I left a message for my GI this morning and haven't heard back from him yet, but when he does call me I will definitely ask about the injections potentially being painful and see if the infusions would be the better option for me. I'm an adult but I'd still like to avoid a painful experience if I can! And I'm glad to hear they helped your daughter so much, I'm hoping for a similar result for myself as the fatigue has been pretty bad lately.
 
They really worked like magic - she went from being exhausted all the time to being a normal teenager. She had one every week for four or five weeks. Her Ferritin was even lower than yours but the rest of her iron studies were very similar to yours. I bet you'll feel so much better!

Our pediatrician said when his wife had cancer, she had iron injections. He said they were quite painful and that he was very glad that infusions were now an option. So definitely ask your GI.
 
I definitely will ask my GI about infusions - hopefully he calls me back soon. I talked to my boss today and mentioned the possibility of me having to miss a bit of work to have infusions, and my boss was totally fine with it (she just wants me to feel better too) so that's at least one hurdle I'm over. Thanks again for your help! I really appreciate it. :) I'm really looking forward to feeling better and having more energy.
 
I have always had infusions however at my last one my nurse said to maybe ask my doc about the injection form. It is actually an infusion in that the start an IV then do a "push" over I think 5 minutes. Then you wait half an hour I believe and you're done. I don't think it would be any more painful but it is way faster. The downside she told me is that is has a higher rate of allergic reaction so if you are very prob to reactions maybe not for you.
 
Huh interesting. He told us about intramuscular iron injections, given into the thigh. Perhaps things have changed?
 
Yeah it wasn't an injection really but an IV then you use a syringe to push it into the IV. It was about 6 months ago they told me and said it was fairly recent. I do imagine an IM injection would be painful and they said they like to use large veins since the iron can be irritating. Thus I imagine directly would hurt.
 
Intramuscular iron — Mobilization of iron from intramuscular (IM) sites is slow. As a result, the rise in the hemoglobin concentration following IM administration is only slightly faster than that which occurs following the use of oral iron preparations.

●Parenteral iron, when given by IM injection, is painful, stains the buttocks, has been associated with the development of gluteal sarcomas, and may be poorly absorbed [70,71].
●Patients who have very brisk continuing bleeding (as with gastrointestinal angiodysplasia) are difficult to treat with an IM regimen because repeated courses of IM iron are painful, and the utilization of iron given via this route is variable.
●Patients with severe malabsorption and/or malnutrition may not be candidates for IM treatment if they have a markedly reduced muscle mass into which the iron preparation can be injected.
For all of the above reasons, including the fact that IM administration of iron dextran has not been shown to be safer or less toxic than the intravenous (IV) route, the most appropriate parenteral route is the IV one [72].
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I'd definitely check to see what they mean by "injection."
 
Injection with iron are rarely given use to the risk of adverse reaction. Iron infusion are used instead.
 
Thanks guys! FrozenGirl, I tend to do better with slower IVs - I had a bad reaction to the IV contrast for MRI when they pushed it in too quickly, but at my 2nd MRI they pushed in the contrast much slower and then I was fine. So based on that experience, I'll go for the slower infusion as I don't want to risk having a reaction.

I heard back from my GI early this morning (why he's working at 7 AM on a Sunday I have no idea), and he said I definitely do need iron therapy but he can't order it for some reason. So he's sending the info over to my GP (and I also left a message for my GP) so I'm now just waiting for my GP to respond and order the infusions. Hopefully I can start them soon.
 
Cat-a-Tonic said:
Thanks guys! FrozenGirl, I tend to do better with slower IVs - I had a bad reaction to the IV contrast for MRI when they pushed it in too quickly, but at my 2nd MRI they pushed in the contrast much slower and then I was fine. So based on that experience, I'll go for the slower infusion as I don't want to risk having a reaction.

I heard back from my GI early this morning (why he's working at 7 AM on a Sunday I have no idea), and he said I definitely do need iron therapy but he can't order it for some reason. So he's sending the info over to my GP (and I also left a message for my GP) so I'm now just waiting for my GP to respond and order the infusions. Hopefully I can start them soon.
Click to expand...

That's weird but hopefully whoever orders it can order it asap. Being anemic is sucky. So tired and lethargic.
 
The weirdness continues, unfortunately. I heard back from my GP just now and he said he's not sure if I need to see a hematologist first (???) so he's looking into that. I didn't realize there were going to be all these hoops to jump through just to get some iron infusions! I'm getting frustrated. Did anybody else have to go through all this just to get some infusions? Are my doctors just clueless?
 
A haematologist? Okay that's ridiculous. My GI saw my hemoglobin was low, got some iron studies done (ferreting, serum iron, etc) plus B12. When he confirmed it was indeed low iron he ordered the infusions.

If you know your anemia is from rectal bleeding I don't see how any more investigation is warranted especially by a haematologist.
 
My daughter was sent to a hematologist too. In her case, it was because we didn't know the cause of the anemia (she hadn't been diagnosed with Crohn's yet) and she's generally a pretty complicated patient.
We were able to get in pretty quickly, she tried oral iron for a week and her ferritin fell even further so we went to infusions.

I hope they can get your infusions set up quickly!
 
Thanks guys. Yeah, my anemia is definitely from rectal bleeding due to hemorrhoids, there's no doubt about it. When I have active hemorrhoids then I tend to pass a large amount of bright red blood into the toilet, and every time it happens they check the source (either via anuscope, sigmoidoscopy or colonoscopy) and it's always been hemorrhoids every single time. So there's no question at all as to the cause of the bleeding.

So yeah, I'm getting really frustrated. The only thing I can think is, as Maya said, maybe they want to be extra safe and sure since my IBD isn't fully diagnosed yet (I have some form of IBD but they aren't sure which one specifically). My GI says I'm a "tricky case" as well so maybe that's also part of it. I don't know. I asked my GP to please hurry with his inquiry to hematology because I'd like to start the infusions as soon as possible so that I can get some energy back. I haven't heard anything further yet from him nor have I heard from hematology. There's so much "hurry up and wait" when it comes to being chronically ill, it gets ridiculous sometimes!
 
I can imagine how frustrated you must be. I don't understand why he wouldn't just prescribe the iron infusions if there is a clear cause of the bleeding (hemorrhoids) and they also know you have some sort of IBD, even if they don't if it's Crohn's or UC yet. It's not like the hematologist is going to tell you which kind of IBD you have!

Sending hugs!
 
I don't understand why they don't do one infusions. Then check for a response 6 weeks later.
 
I personally had a bad experience. Luckily with iron infusions though, (at least at the hospital I was at) the nurse is not allowed to leave for the first 15 minutes. The dropped my blood pressure so low that I started to black out. I just remember the nurse shaking me over and over again telling me not to fall asleep and I had to stay awake and I think they might have called a code but I don't remember that. They stopped the infusion and I went back to normal shortly after. When my iron gets low I just get blood transfusions instead of iron infusions
 
Afidz, that sounds scary! I tend to have low-ish BP all the time anyway (my normal these days is like 100/60) so hopefully I won't experience anything like that. My aunt who has Crohn's, she has had multiple blood transfusions and she made it sound like those are not a big deal, so I guess that might be the next step for me if I have an issue with my BP with the iron infusions. Hopefully I'll be fine though.

So I pestered my GP all last week and heard nothing, was getting really frustrated and impatient. I called his office first thing this morning and got to speak with the nurse - she said that my GP contacted the infusion center on Friday so they should be calling me today to schedule my first iron infusion. Finally! So now I'm just waiting on that call. The nurse said they'd be calling me this morning but I'm skeptical of that because things always seem to take longer than they should. At any rate, we'll see - hopefully I'll hear from them soon and can get an appointment reasonably soon.

Edit: That was fast! My GP's nurse just called me back, she got me 3 appointments scheduled. Their recommendation was to do 3 infusions, each one a week apart. So the following 3 Mondays (Nov 2, 9, and 16) I'll be having my infusions. :D Wish me luck!
 
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Glad they finally set them up! Good luck!

Funnily enough, my daughter's hemoglobin and Ferritin have been dropping in the last few months and her GI thinks she may need iron infusions. So if her bloodwork confirms that, looks like we may be joining you soon!
 
Good luck to your daughter, Maya! If she does need infusions, I hope they help her a lot - you said her previous round of infusions helped quite a bit, so hopefully this time is similar. Keep me posted, I'll keep you and her in my thoughts!

Okay, another question for everyone - how long do iron infusions typically take? I was told today by the nurse who scheduled me that each one of my infusions is going to take about 3.5 hours. That sounds like quite a long time for each infusion! I had been thinking it'd be an hour or maybe two, but 3.5 seems longer than necessary. Does this just mean that they're going to do the infusions extra slow, to ensure that I don't have a reaction or a drop in blood pressure? I do have low BP normally anyway, so that's all I can think, is that they've seen in my records that my BP is typically lower than average and they want to play it really safe. I'm honestly not really sure though why it's 3.5 hours! At this rate I'm planning on bringing a book, my Kindle, my Nintendo DS, and maybe even bringing some yarn and my crochet hook. :p I could crochet myself a couple scarves or a shawl or a good chunk of a blanket if it's going to be 3.5 hours of sitting in the infusion center for 3 Mondays in a row!
 
Wow, that is long! M's infusions only took an hour. Even the first one, which was run a bit slower, was only about an hour and fifteen minutes. She had no reactions at all and read the whole time on her kindle. Her BP is always low too (today it was 96/65) but they didn't do anything special.

Perhaps every hospital has a different protocol?
Good luck! Hope they make a big difference!
 
Maybe that's it, just my hospital's protocol. I'm really not sure! It just seems like such a long time. At least I don't have to miss much work. 2 of the appointments I was able to get for late afternoon/early evening, so I won't have to miss much work, but for one of the infusions I will have to take a half day off of work as I could only get a 1 PM appointment for that day, so that's basically going to take up the entire afternoon (I'll have to leave work at like 12:30 at the latest because it takes awhile to get to the hospital and find a parking spot, and if it does indeed take 3.5 hours then I won't be done with the infusion until 4:30 that day). Slightly frustrating but oh well. If it helps then that's the important thing, missing work and being inconvenienced are minor annoyances. Feeling better and having more energy are the important things so I'll do what it takes to get there! :)
 
Timing really depends on the type of iron they use. When I got mine with what the nurses told me was an "old" type it was a 5.5 hour infusion plus an hour wait after. Regardless I would bring lots of things to occupy you. You have to stay in the room in case of reaction so maybe bring snacks too.
 
5.5 hours!! Plus an extra hour!? Holy cow, well then, I'm glad I didn't get put down for that version of the infusions! I wasn't sure about bringing snacks, am not sure that they're even allowed in the infusion center? But I definitely will bring snacks with me just to be safe - I know there are vending machines and a really good cafeteria in the hospital as well so with snacks and vending machines around I should be okay. Thanks for the info, FrozenGirl!
 
Yeah. It's a little extreme. I asked about food and they said it was fine in mine. I would avoid common allergens though like peanuts. Or anything too messy. Otherwise I get hungry. And like I said while some patients (on IVIG) were allowed to go down to the cafeteria they said iron patients couldn't leave.
 
Were the iron patients at least allowed to use the bathroom? Because even if my guts are calm, I usually have to urinate about once per hour, I won't be able to sit there for 3.5 hours without at least having to pee! I understand not being able to go to the cafeteria, though. I definitely will bring some snacks, I'm thinking some rice cakes and maybe a fruit cup or pudding. Those should hopefully be okay. Thanks again for the info!
 
Oh yeah. I wound not have been able to go 6+ hours without using the washroom. They did unfortunately only have one Washroom but it was doable. Those sound like good snacks, not messy or really scented. I would also recommend headphone. One time I got stuck sitting beside a lady who just wanted to keep talking and talking and talking and I just wasn't up for it at the time.
 
Thanks, I will bring my noise-canceling headphones and I'm going to make sure my ipod is charged up. I don't think there's much opportunity for carrying on a conversation in the infusion center at my hospital though. I was there once before a few years ago for a blood test (to check for Addison's disease - it's a longer test as they draw your blood once per hour for a few hours, so had to be done in the infusion center). I'm trying to remember for sure, but I seem to recall that there are partitions between each chair so that each person has a bit of privacy. I definitely don't remember anybody trying to have a conversation with me back then (I'm a massive introvert and don't really like conversations with strangers, so I would likely remember it if somebody did try to chat with me in the infusion center).

That's very good to hear about being able to use the restroom! I figured they wouldn't/couldn't deny me bathroom access but it's good to know for sure. I am guessing that there's just one bathroom in the infusion center as well (I know there's just one bathroom in the area where they used to do colonoscopies - eek!). The infusion center isn't very big though so just one bathroom shouldn't be too much of an issue.
 
Lucky you with a bit of privacy. I too am an introvert.

Whoever designed the colonoscopy area with one bathroom clearly has never had a colon colonoscopy. What a terrible design. My hospital is the same way, you have to go to a different area to get to another washroom.
 
You have to go to a whole different area to get to the bathroom? Oh ick, that's horrible!

Fortunately it's not like that anymore for me. They used to do colonoscopies at the hospital, but then they built a brand new GI clinic and all colonoscopies are done there now instead. So for my first scope, it was done in the hospital with the "one shared bathroom for everybody" situation. My last 2 scopes were done at the new GI clinic - both times they gave me my own private room with its own private bathroom! That was much better having my own bathroom, especially for the scope in which the prep decided it wasn't done yet and I had to run to the bathroom numerous times after I had gotten to the clinic the morning of my scope. There's no way I would have made it half the time if I was still in the shared bathroom situation, but having a private bathroom 5 feet from my bed meant I (narrowly) avoided soiling myself. Thank goodness!
 
Wow. that sounds awesome. There is one washroom in the entire colonoscopy area, both pre scope and the recovery area. Not a good situation. If that one is occupied...not good.

I would kill for a room with a private washroom. Alas one of the downsides of universal healthcare, care for everyone luxury for no one.
 
Don't get me wrong, I'd much rather have universal healthcare and forgo any luxury! I currently have about $1200 in medical debt that I'm slowly trying to pay off - but every time I get a chunk of it paid off, I seem to incur some new medical debt. I'm never going to get it all paid off and keep it that way. Surely these infusions will just add to that debt as well, I honestly have no idea how much they're going to cost. (And yes, I do have insurance, but there's deductibles and co-pays and anything that my insurance randomly decides not to cover, and it all adds up quickly.) I'd trade in every luxury and then some to have the peace of mind to know that I would never go broke from medical bills - sadly there's no guarantee of that in this country. So yeah, we sometimes get private bathrooms here, but also nobody can really afford to be sick. Not exactly the best trade-off ever.

Sorry for that little vent. I was just looking at my medical bill today which is why it's on my mind! And now I think I'm off to research how much iron infusions cost...

Edited: Iron infusions seem to cost about $600 each from what I can tell by googling. Or at least that's what they'll likely bill my insurance, so it should cost me less than that out of pocket. Although there were some horror stories online of iron infusions costing many thousands of dollars, it sounds like that's not the norm. Okay, good. I can handle that.

Edit again: Just to calm my fears more thoroughly, anybody else in the US know offhand about how much their infusions cost? Maya, are you in the US?
 
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Yes, we're in the US. Insurance paid for everything for M as far as I can remember. Sorry, I don't know any more than that. We (very luckily) have good insurance and once we've fulfilled our deductible (takes just one Remicade infusion for M ;) ), our insurance pays for everything.

Good luck! Hope it goes well on Monday.
 
Thanks Maya, it's good to hear that your insurance covered everything. I've got my deductible fulfilled this year as well but I have to pay 20% out of pocket after that up to a certain point, although at times it seems to be more or less than 20% (like when my hubby racked up a $10,000 ER bill a few years ago, we only had to pay about $1000 out of pocket when 20% would have been $2000). I have Blue Cross Blue Shield insurance and they're sometimes flighty about what they will and won't cover so I guess it's anybody's guess. Although some things they do cover in full, like I believe I didn't have to pay anything for either of my colonoscopies, they were fully covered by insurance. At any rate, I'm definitely having the infusions because I just want to feel better already - if it ends up costing me a lot out of pocket, I'll just set up another payment plan like I always do. :)
 
Yep. No luxury here but I have no fear of medical debt. I pay for prescriptions if you don't have insurance that's it. And if you can't get insurance through your work ( which usually your employer contributes x percent of the premiums) you can get a provincial plan that costs 70 dollars a month and covers 70% of prescriptions with no max. We also only pay premiums ( flat fee per year or month) then a percent, ranging from 50-10 percent of the drug depending on your plan.

I feel so bad for you guys without universal health care, I don't know how you do it. I go crazy dealing with just prescription coverage and I never have to worry about fees for seeing my doc, scopes, MRIs or iron infusions. Healthcare should be a right, not a privilege if you can pay.
 
FrozenGirl, yeah, there's unfortunately not much choice - if you're sick in this country, you just have to pay. It's a terrible system and essentially punishes those of us with chronic illnesses. There are certain ways to save some money - I have a savings card for my Lialda so I pay $10 per month for it rather than the $75 it'd cost me with insurance but without the savings card (without insurance, it'd be something like $500 per month). I also got financial aid from my hospital the first year I was sick - I had racked up about $6,000 in medical debt that year but I somehow qualified for financial aid (I didn't actually meet their criteria so I'm not sure how that happened) so they wiped out that debt, that was nice. And payment plans are my best friend, I am currently paying $50 per month (more if I can afford it) on my current $1200 of medical debt, and there's no interest or anything like that.

So yeah, it's not great by any means but it's do-able if you use things like coupons and financial aid and payment plans. I keep telling myself, we have about 7 years left to pay on my hubby's student loan and 10 years left on the mortgage - after those are paid off, we'll have more money and can pay off our other debts like credit card and medical debt. So, someday, years from now, I may actually finally be debt free. I guess that's the new American dream - that's mine anyway! I'll be turning 36 next week, so if I can get these debts all paid off before I hit 50, then maybe I could save money like crazy from 50 onwards and actually be able to retire someday before I die. Now that's a dream!
 
Wow. That is just crazy to me. I mean it's nice that they have interest free payment plans but still. I am going to need to start getting student loans soon and it freaks me out and they have interest but not much. And once I pay it off it's done. No recurrenting payment that health care is for you guys. It's mind boggling to me honestly. I'm impressed you manage all the financial stuff between coupons payment plans etc.
 
I had my first infusion yesterday. All went well, no drop in BP and no allergic reaction. It did make my stomach feel pretty unsettled, though (the nurse warned me that might happen, she said the infusion sometimes has a similar effect on the stomach that the tablets have) so I have had the gurgles and some d. Not too bad though, that's certainly something I can deal with. I haven't noticed any uptick in my energy level just yet, but I didn't sleep very well last night so I think I'm just tired today because of that. All in all it went fine, and took less time than they had initially told me. I had been quoted 3.5 hours but it took exactly 2 hours - I got there at 3 PM and was done at 5 PM.
 
I'll have 3 infusions total, so one yesterday, one this coming Monday (the 9th), and one the Monday after that (the 16th). And more good news - as the day has gone on, I have noticed an uptick in my energy levels! :D I even went to the gym this afternoon, which was probably stupid because my stomach is still fairly unhappy. I made it through my workout although it was pretty tough. I had enough energy, I just had to be careful of my stomach (didn't do any ab exercises obviously). So this is quite encouraging, working out is my favorite thing and it's been a little while since I've been able to have a good workout due to my low energy. Having enough energy to make it through a workout is huge, even though my workout was difficult with my stomach being upset, this uptick in energy is wonderful. And I know that my stomach should calm down soon, that's just a temporary reaction but the added energy should be more permanent. I think once my infusions are all over with and my stomach properly calms down, then I should be able to actually have a good workout and push myself in the gym - I'm really looking forward to that! :)
 
Ah, same number and timing as my last set of infusions . I felt pretty crappy after my first one but the side effects weren't half as bad on the 2/3/4/5th ones. My doc said it can take up to a month to feel the full effects so it is a good sign you have a bit more energy now, it should only improve.
 
Thanks FrozenGirl, that's very good to know that the crappy feeling hopefully won't recur as strongly on my 2nd and 3rd infusions! I have been somewhat dreading my upcoming infusions because of how icky I felt after the first one (I seem to be fairly recovered now - today I was able to eat without any stomach symptoms, am no longer nauseous, the gurgles seem to have stopped, etc). It's really good to hear that I might not feel so awful after these next couple infusions.

That's also good to know about it taking up to a month to feel the full effects - hopefully things will just get better from here! :) For the longest time I've felt exhaustion behind my eyes, you know? Like I could just nap forever, there was no such thing as getting enough sleep, I was sleeping for 10-12 hours a night on the weekends and still woke up exhausted and was having a really hard time finding the energy to make it through a work week. The day after my first infusion, I didn't feel that exhaustion behind my eyes anymore. It just went away and I felt much more human. If I feel even better from here on out, bonus! I'm just happy that the underlying exhaustion is gone! :D
 
Yeah honestly I felt so crappy after my first one I didn't even want to go back for my next one. My GI convinced me and it was wayyy better. Only mild nausea and slightly increased D after the next couple. And yeah my GI said about a month for full effect but I did feel better after the first 2.
 
So your GI told you that, therefore he seems to have some experience with these infusions? Mine doesn't, which seems odd to me. He was the one who had tested my iron in June (it was at 43) and in October (it dropped down to 30) and he said I needed some sort of infusions or injections but he couldn't order them. That seemed strange, surely he's got other IBD patients who deal with blood loss? And then my GP seemed to not know much about iron infusions either, as I stated earlier in this thread he had to talk to hematology for some reason before he could order the infusions. So yeah, my doctors have been basically useless all throughout this process! Which seems really strange to me. It's not like they're newbie doctors either, they're both middle age and I've been seeing my GP for about 12 years now and seeing my GI for 6 years, so they've been practicing medicine for at least that long and it seems odd that neither seems to know quite what to do with an iron deficient, rectally bleeding patient. The nurse at the infusion center assured me that she administers iron infusions "all the time, every day" so she certainly had experience with it! My doctors are just odd in this regard I guess.

At any rate, that's really encouraging, it sounds like you were in the same boat as me, with feeling awful after the first infusion and just dreading the 2nd one. I'm still not particularly enthused about the 2nd infusion, but you've given me hope that I won't come out of that one feeling horrible. I know I need to have all the infusions that I've been scheduled for so I wouldn't cancel the upcoming infusions, but I'm glad to have some hope of feeling okay afterwards, rather than just grinning my teeth and bearing it and anticipating feeling awful again.

And, I'm going to enjoy feeling relatively well for a few days before my next infusion. :) My birthday is tomorrow so I'm going shopping and I'm also going out for sushi, yum! And my parents are taking me out to lunch on Sunday, so basically I'm just going to stuff myself with food for a few days until my infusion on Monday. :p So that way, no matter how that infusion goes, at least I'll have a few fun days in the meantime.
 
Yep. I have actually had 2 separate "sessions" of iron infusions. First was 2 doses second was about 7 months later and 3 infusions. Prior I had been on oral iron since diagnosis. I actually switched brands as my GI recommended. He seemed very familiar with the stepwise approach and the second time didn't hesitate to order more infusions as soon as I hit a hemoglobin of 99 or 9.9 depending on your units.

I did find it really weird for you to be referred to hemotology for what seems to me like an uncomplicated, non life threatening bleeding with known cause. Even on the referral form it specifies reason for bleeding with a check box for IBD so it is obviously very common.

Like I said, the first one was terrible. I had bad D afterward for days and nausea and strange leg swelling. The next 2 (and later 3) were so much better just some mild nausea and maybe slightly increased D but given timing in relation to Remicade it might just have been pre infusion symptoms.
( My poor Remicade nurse, the iron nurses used up all my good veins in those 3 weeks and Remicade was right after my third. I have bad veins to begin with so that part wasn't too fun. I wish they could have just left the IV in for the 3 weeks.)

Yay! Happy early birthday. Hopefully you will be able to have a great day and enjoy all the foods you want 😊
 
FrozenGirl, that's interesting that you mention leg swelling! I think I might have had something similar happen, with both my infusions. At the first infusion, I was wearing leggings (I had come straight from work to the hospital - I have to wear business attire at work, and I didn't think that wearing trousers to my infusion would be comfortable, so I wore leggings and a sweater dress to work that day). When I got home after the infusion and changed into my pajamas, as I took off the leggings, my lower legs were quite painful! It only lasted for a few minutes, and it was just my lower legs, like below the knee. It was a prickly pain, it felt like my leggings had been way too tight - you know when you wear tight socks and they sort of cut into your skin? It was like that. The sensation lasted maybe 2 or 3 minutes and then was gone, so I thought nothing more of it. The leggings were new so I figured maybe they were just slightly too small or something.

But then, after my infusion yesterday, I went home again and changed clothes. This time, I was wearing tights and a skirt. I've worn these tights before, they're not new, so I know they're not too tight. But once again, when I took them off, I had the same prickly painful sensation like they were way too tight. And once again, it just lasted a few minutes and then was gone. Super odd! So I guess I've learned my lesson and will wear loose pants, rather than tights or leggings, to my 3rd infusion next week. Or maybe I should wear leggings again? Maybe the leggings/tights prevented my legs from swelling out too much? The prickly pain isn't too bad, it's just annoying for a couple minutes so I can totally deal with it. Hmm, now I'm not sure what to wear to my final infusion next week.

I did have a little bit of stomach upset after my infusion yesterday, but as you said, it wasn't too bad and seems to be mostly gone now. Mainly I had a bit of diarrhea (only like 2 bathroom trips though) and my GERD acted up a bit so I took some extra nexium. No massive nausea or anything like that, though. I slept well and feel fairly good today. Still feeling slightly "off" in my stomach so taking things a bit easy food-wise today just to be safe, but other than that I'm doing okay. After my first infusion, I needed to take like 6 Zofran just to be functional at work the following day. This time, I haven't had to take any Zofran and I'm functional, so that's a definite improvement.

Oh, and I did have a good birthday. :) Was able to eat some sushi and my guts behaved themselves very nicely (my guts love sushi, which is fortunate because I'm going to Japan in the spring). My parents and brother gave me a chromebook for my birthday, so I had that to watch movies on at my infusion yesterday which was really nice (it's just a lightweight small laptop that basically only does internet).
 
I'm really not sure what the leg swelling was. May a small reaction I guess. I wore loose yoga pants and it still happened. It did get better though. My second infusion I had some swelling but the next set of infusions I had almost none. If I hadn't been watching for it from the first time I'm not sure I would have noticed. I did try standing and walking more frequently but that didn't seem to help ( and my legs hurt from the swelling) very odd.

I'm glad you second infusion wasn't as bad. My second was the same way. Some minor increased D and a bit of nausea. That kept happening though all my infusions but it wasn't too bad so I'm okay with that being the price I had to pay. It's only 3 weeks vs the months of overwhelming fatigue.

Yay for birthdays!! And yay for digestive systems that occasionally behave. It's such a treat when it happens. Oh a Chromebook will be super handy at infusions. I love my tablet that I can just throw in my bag an not worry it's going to cause my bag to be ridiculously heavy. I brought my tablet to iron infusions and Remicade. Very handy and fun.
 
Yeah, things like tablets and chromebooks are wonderful for a lot of things IBD-related! I have an older tablet (kindle fire 1st generation) which I honestly usually just keep in my bathroom at all times! :p I hate being stuck in the bathroom for awhile without entertainment, so yeah, my kindle basically just stays in the bathroom now. The chromebook, I wanted a small lightweight computer with a keyboard as I hate typing on my kindle or phone, and I also wanted a little computer to bring with me on my trip to Japan (I'm slightly paranoid as my camera has randomly deleted photos from itself before, so I am going to back up all my Japan photos to the chromebook during my trip). It was really nice having the chromebook at my infusion, the hospital has free wifi so I was able to watch netflix and youtube the whole time.

I definitely agree with you that the 3 weeks of going through infusions is completely worth it to get rid of the crushing fatigue. The mild d and nausea are worth the benefits of having enough iron and enough energy. Aside from the d and other temporary symptoms, I've just felt better and better as this process has gone on. I knew that I was exhausted all the time before having the infusions, but in a way it's like you don't fully realize how bad you were feeling until you start to feel better, you know? I definitely feel tons better now, I'm able to exercise again and I'm able to get through a work week without needing to just rest all weekend. That's huge! :)
 
I totally agree. You forget how it feels to have energy until you actually have it again the. You are like wow, this is a what normal people feel like all the time.

I am super jealous of your hospitals free wifi though. My hospital is super old and has no free wifi :(
 
Very interesting - my daughter had no side effects at all! Honestly, the worst part was being bored during the infusion :lol: and hers was only an hour long!

I hope you feel better soon Cat!
 
Well, my energy levels have taken a noticeable dip today, but fortunately there's a good explanation for it. I seem to have caught a cold and that's making me feel run-down. I can still have my infusion on Monday even if I still have a bit of a cold then, right? Hopefully I'll be mostly over this cold by Monday at any rate. This is the 3rd cold that I've had this autumn, not fun. Clearly my immune system is not quite right even though I'm not on immunosuppressants. Anyway, it'll be a cozy weekend for me of resting and netflix and tea and soup, and then my final infusion on Monday.

FrozenGirl, yes, free WiFi fortunately seems to be pretty standard here. There's free WiFi in every medical building I've been in - the hospital, the GI clinic, my GP's clinic, etc. It comes in very handy! Especially when waiting for my GI - he's a good doctor but he's also notoriously frequently late to appointments, once I had to wait just over 2 hours for him to show up to perform my upper endoscopy. So free WiFi is definitely great as I can at least entertain myself while waiting for him to show up! :p
 
I asked my hematologist about iron injections but was told they pretty much only have infusions. I'd much prefer an injection but for now I get iv iron.
 
I had 14 around if iron infusions done from may to september. Every other week I would go to the hospital for an hour or so. It wasn't too bad. I just dislike needles. I had to see a blood doctor. I was also put on folic acid.
 
Cat:

Ugh I feel for you being sick. I had a cold about a month ago and it lasted a little over 2 weeks. Longest cold I have ever had! I think you should be fine for infusion even if you are still sick. As long as there is no fever you should be good. Their checklist was similar to the Remicade one where they asked about fever or flu like symptoms but cold was okay ( as per my Remicade but I'm sure iron is the same, maybe less stringent since iron doesn't suppress your immune system). Hope it clears up quick.

Ah I am rather jealous of the wifi. Luckily my Remicade clinic has free wifi but not my GI. Who like yours is an awesome doc but frequently late. I attribute it to him taking time to listen rather than rushing people out so I'm okay with it. I mean on time would be great but you take what you can get right?
 
FrozenGirl, yeah, I had a cold last month as well and I think mine lasted 2 or 3 weeks too, I was coughing a lot that whole time. Fortunately I seem to be mostly over this latest cold. I rested all weekend and that seemed to help.

Yeah, I'm sure that's why my GI is always late - certainly I always keep him past my allotted time limit because I'm asking a zillion questions at every appointment and he very thoroughly answers them all. I feel bad for whoever has their appointment scheduled right after mine! :p And that's great that you have free WiFi for your Remicade infusions at least. It would be miserable to sit there for however long that takes (several hours?) with no WiFi.

My final iron infusion is this afternoon! I'm so excited to be done with this process (or at least done for the time being) after today. And really looking forward to the future with more energy. Just think, I'll actually have enough energy to make it through the holidays! :)
 
Ugh. Colds suck of top of ibd.

Haha I am guilty of doing the same. It's hard because I always want to try and get all my concerns answered but I know that's not always feasible. And yes thank gosh for free wifi at Remicade. When they switched building they didn't have the wifi or TV or anything set up. Rather boring.

Yay! I hope it gives you awesome energy. It should all be up from here on out.
 
No TV and no WiFi!? That's awful! At my infusion center, they have little individual TVs for every chair. They don't seem to get a lot of channels but at least it's something.

Hah, this reminds me of when my grandpa was in the same hospital to have heart surgery. He loves watching sports on TV. When he had his surgery and was waking up in the recovery area, there was a TV but it just had some fish show on it (I think it was like a fish screensaver, or maybe there's an aquarium channel or something?). My grandpa was still intubated and couldn't speak, but he motioned that he wanted a pen. As soon as he was handed a pen and paper, he wrote down, "NO fish. SPORTS." And he underlined and circled the word "sports". That's how we knew he was okay after his surgery, he wanted to watch sports! :p

So I know the hospital gets sports channels, and for some reason a fish channel, but I don't think they have much besides that and I haven't watched much TV when I'm at the hospital. Just Netflix or Hulu on my chromebook.

And yes, I'm officially done (for now at least) with the infusions! I'm pretty happy about that. Guts are slightly unsettled today, but not bad at all (I can still eat normally and I haven't had to take any Zofran). I'm still slightly sniffly but I think it's allergies today, I think the cold is over with, fortunately. So, hopefully like you said, it's just onwards and upwards from here! :D
 
Haha. Yep. Luckily they have wifi and one TV now. Though apparently there is talk of renovations involving making the separate rooms (each with 2-3 chairs ) into one big room at my Remicade center. I'm not happy about this.

Glad to hear the guts are being at least somewhat chill. I am hoping the energy will be coming to you soon.
 
I'm doing a lot better today - guts are quiet, I have good energy and was able to exercise this afternoon, and I'm not feeling like I need a nap, and I think the cold is fully gone. All good things! :)

I agree that the "one big room" design isn't great. My infusion center is basically one big room - each chair has its own sort of little cubby space with walls on 3 sides, and the open side faces a big central area where the nurses have their computers and workspace. It's not great, it's pretty noisy since you can hear everything that's going on in the infusion center. There's a curtain by each chair that you can shut if you want privacy, and each little chair area has its own light switch so you can turn off the lights, so it can be somewhat private but it's still noisy. If your Remicade infusion center changes to be one big room, I highly recommend that you bring along some noise-reducing headphones. I brought mine to my iron infusions and they worked well. They muffled a lot of the sounds that were going on around me, of machines beeping and nurses talking and so on.
 
Yay. Glad to hear the guys are having a good day. I do find the iron is tough on them but it's worth it in the long run.

Yeah I'm not exactly sure how it will work other than it will be on big room with a TV on each side then One private room which I assume they will reserve for people on their first infusion for privacy doing paperwork and such. Not sure about curtains. I really like the suggestion of noise reducing headphones. Smart idea. And might help distract me from my social anxiety about sitting in a big room with lots of people. Are your ones that are buds and go in the ear or are they over the ear? And approximately how much were they if you don't mind me asking.
 
I have over the ear headphones. I had bought them on Amazon last year for about $20. I just looked on amazon but I can't seem to find the same headphones I have. But if you read some reviews, I'm sure you can find a pair of headphones that will work for you. That's what I did - I knew what my budget was (I definitely wasn't in the market to buy expensive headphones) and I knew what style I liked (I wanted over the ear, not earbuds, and I wanted ones that fold up to be a bit smaller for travelling), so once I pulled that up in the search then I read some reviews until I found a pair that seemed good and was in my budget. :) I have some social anxiety as well and don't like being around a lot of strangers particularly when I'm already stressed out, so being able to immerse myself in watching a movie and largely eliminate the background noise, that was really nice.
 
Thanks. I am going to maybe start looking around.

Yeah I am pretty unhappy and slightly panicked about the changes. I have done even appointment at 9 am basically since I started Remicade and my one in January has to be at 1030am and even that is freaking me out because then there will be more people there and what of someone takes my chair and I can't sit in my usually room etc etc. Plus I feel really uncomfortable doing anything in front of people like sitting comfortably (which for me if often cross legged or fetal like position) in front of other people. I can only hope maybe they will have curtains or something.
 
I would hope that there would at least be curtains! And hopefully your 10:30 appointment won't be too much different than what you're used to. I like to sit in weird positions too, if I sit too long in one position then my hips start to ache so I generally shift around and fidget a lot. I also have my preferred chair at the infusion center - there's one chair that's in the corner and it's not as open as the other chairs are, it still opens up to the main central space but the opening isn't as large and it feels more secluded and private in there. They don't reserve specific chairs though, it's just, whatever chair is open is the chair you're stuck with for the next 2 hours. Fortunately for 2 of my 3 infusions, I got to have that corner chair that I like. For one of my infusions, though, I had to have an end spot which was very open and people were walking past because I was right next to the hallway where the bathroom is, so a lot of people going by and not very private at all, I didn't like it. So yeah, I can definitely relate to wanting to have your same chair that you always sit in!

Hah, at my last infusion, there were 2 chairs open when I showed up, so the nurse was like, you can have this middle chair, or you can have the corner. I was like, CORNER! No question! I was so glad to have my favorite spot for my last infusion.
 

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