Re: Iron Infusion Update

[Guest guest]

> Hey guys,

>

> We looked online to see possible side affects of the iron infusion,

> and nausea, vomiting, abdominal pain, and D (which I also just had)

> were listed, so I'm now thinking it was the iron that gave me this

> reaction.

>

> I'm wondering if any of you have had similar side effects such as these?

Poor Alyssa.

Feel better sweetie.

Mara

[Guest guest]

Since this came on so quickly after the infusion, I'm betting on the iron. The

sucrose went in to your bloodstream, not your gut, so don't worry about it

feeding any bugs there. I'm sorry this happened and hope you feel better soon.

PJ

>

> > Hey guys,

> >

> > We looked online to see possible side affects of the iron infusion,

> > and nausea, vomiting, abdominal pain, and D (which I also just had)

> > were listed, so I'm now thinking it was the iron that gave me this

> > reaction.

> >

> > I'm wondering if any of you have had similar side effects such as these?

>

> Poor Alyssa.

>

> Feel better sweetie.

>

> Mara

>

[Guest guest]

I can't help with the Iron infusion stuff because I never had one.... yet....But as far as passing out, I do that too. I was into body building in college and I would always get the weirdest reaction when I told people I pass out. I felt like Mike tyson. Big guy with a squeaky little voice. hehe.Anyway, hope you feel better and get through this! I'm sure once the meds and supplements get all sorted out and working you'll feel GREAT.Good luck!-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.To: BTVC-SCD From: luckycharms@...Date: Tue, 16 Mar 2010 17:26:41 -0400Subject: Iron Infusion Update

Hey guys,

I got home from my iron infusion about 2 hours ago. We decided to go

with the sucrose, just to be safe. When they first put in the IV, I

almost passed out, because that's just what I do, so it took much

longer to actually get me in the chair with the iron hooked up to me.

After that I was okay though, and I was able to get on my computer, do

my homework, and be pretty comfortable doing it. I was going to email

you guys during it, but I couldn't send emails from there, even though

I could receive them.

So everything went well up until about the last half hour, when I

stated getting some soreness in fort of a band around my abdomen, in

my solar plexus/stomach/bottom of rib cage area. At first I thought it

was just from sitting for so long, but it got worse, so they called my

GI doctor to come check me out. She said everything seemed fine, and

that I could take some tylenol for the pain if necessary.

On the way home, things got much worse. I could definitely tell by now

that the pain was in my stomach, and it wasn't nausea, just really bad

pain/soreness that radiated through to my back. It stayed like that

from after the iron infusion, which was about 2:15, until about half

an hour ago, at 5:45. So, pretty miserable.

At this point we were wondering if it was maybe a new food I had

introduced, since I had some raw apple for the first time yesterday,

then more today. But then at about 5:45 when the pain stopped, I got

really nauseous, and I just came back from a lovely bout of violent

vomiting. So now I'm guessing it's not the raw apples, since I

introduced four new foods in one day a couple weeks ago without this

bad of a reaction.

We looked online to see possible side affects of the iron infusion,

and nausea, vomiting, abdominal pain, and D (which I also just had)

were listed, so I'm now thinking it was the iron that gave me this

reaction.

I'm wondering if any of you have had similar side effects such as these?

Peace =)

Alyssa 16 yo

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)

Azathioprine 50 mg 1x per day

Prednisone 35 mg 1x per day

Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.

[Guest guest]

I hope you feel better.  Sounds awful for you.

 

Debbie

 

I can't help with the Iron infusion stuff because I never had one.... yet....But as far as passing out, I do that too.  I was into body building in college and I would always get the weirdest reaction when I told people I pass out. 

I felt like Mike tyson. Big guy with a squeaky little voice. hehe.Anyway, hope you feel better and get through this! I'm sure once the meds and supplements get all sorted out and working you'll feel GREAT.

Good luck!-UC - 1+ yearsSCD - 8 months 100% strict and 4 months restricted diet.Asacol - 12 pills a day Prednisone 40mg entocort With vit E mixed inBack to intro/stage 1 for now.

To: BTVC-SCD From: luckycharms@...Date: Tue, 16 Mar 2010 17:26:41 -0400

Subject: Iron Infusion Update 

Hey guys,I got home from my iron infusion about 2 hours ago. We decided to go with the sucrose, just to be safe. When they first put in the IV, I almost passed out, because that's just what I do, so it took much

longer to actually get me in the chair with the iron hooked up to me. After that I was okay though, and I was able to get on my computer, do my homework, and be pretty comfortable doing it. I was going to email

you guys during it, but I couldn't send emails from there, even though I could receive them.So everything went well up until about the last half hour, when I stated getting some soreness in fort of a band around my abdomen, in

my solar plexus/stomach/bottom of rib cage area. At first I thought it was just from sitting for so long, but it got worse, so they called my GI doctor to come check me out. She said everything seemed fine, and

that I could take some tylenol for the pain if necessary.On the way home, things got much worse. I could definitely tell by now that the pain was in my stomach, and it wasn't nausea, just really bad pain/soreness that radiated through to my back. It stayed like that

from after the iron infusion, which was about 2:15, until about half an hour ago, at 5:45. So, pretty miserable.At this point we were wondering if it was maybe a new food I had introduced, since I had some raw apple for the first time yesterday,

then more today. But then at about 5:45 when the pain stopped, I got really nauseous, and I just came back from a lovely bout of violent vomiting. So now I'm guessing it's not the raw apples, since I introduced four new foods in one day a couple weeks ago without this

bad of a reaction.We looked online to see possible side affects of the iron infusion, and nausea, vomiting, abdominal pain, and D (which I also just had) were listed, so I'm now thinking it was the iron that gave me this

reaction.I'm wondering if any of you have had similar side effects such as these?Peace =)Alyssa 16 yoUC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per day

Prednisone 35 mg 1x per day

Hotmail: Trusted email with Microsoft’s powerful SPAM protection. Sign up now.

[Guest guest]

Alyssa,

I am SO sorry. What a rotten day! I'm glad you had the sucrose, at

least, as it probably helped avoid other problems. I would vote also

that it probably was the iron, especially since you looked it up and

it listed your unpleasant symptoms as side effects. Having said

that, I will say that I have had most of this constellation of

symptoms, the back pain/stomach pain/D/nausea, as a result of food

reactions (I never go beyond nausea unless I just had surgery, it's

genuine food poisoning or I was just in Mexico). However, I still

think it almost certainly was the iron since that's what happened

most recently, your stomach started hurting before they even were

done, and you haven't reported this whole collection of things

happening with new foods.

Rest up. Feel better. One thing, sounds like tomorrow just about has

to be a better day!

[Guest guest]

Alyssa

I

can’t say for sure that what you experienced is what happens to me when

my Sphincter of Oddi goes into a spasm, but the symptoms you describe are what

happens to me after every meal (although not the severe levels or vomiting except

for a few times a year). It could very well be that the amount of iron in

the infusion triggered a reaction in your liver and common bile duct area which

triggered Sphincter of Oddi spasms which causes the nausea and in some cases

vomiting. When my Sphincter of Oddi spasms, I feel it exactly where you

describe and it often includes my back between my shoulder blades (that’s

the common referred pain location for biliary tree dysfunctions).

That

pressure/pain along the lower rib cage is rather unique. When I get that in

addition to nausea and back pain, plus overall upper right quadrant pain, then

I know my Sphincter of Oddi is acting up. I can usually feel the muscles

themselves twitching and cramping a little while after the pressure and pain

starts.

You

might ask your gastroenterologist about whether the iron is triggering

Sphincter of Oddi spasms. This is an area of the digestive tract that

most doctors know little about, so it may be likely that she will think it

unlikely. It took me several doctors before I found my current one who

diagnosed me with this dysfunction. There is a lot about the Sphincter of

Oddi (and pancreas) that isn’t understood yet.

I’m

sorry to report that I have a difficult time with many mineral supplements

(along with fats, fiber and seasonings) now that I have Sphincter of Oddi

dysfunction. I have had to work at finding supplement dosages and frequencies

and delivery systems that my upper GI will tolerate. Not just because of the

nausea but because any little thing easily triggers Sphincter of Oddi spasms,

and the pain/pressure/back pain is difficult to endure. Plus it throws

off my digestion for days.

I

don’t know whether this reaction of yours, if it is Sphincter of Oddi,

will happen again, or might over time cause permanent damage. But at least it

is a possibility. At the very least your doctor should be concerned about

your reaction to the infusion regardless of the uncertainty of the cause.

Perhaps some adjustments could be made to the strength of the iron infusion, or

the brand, when you need another dose.

Kim M.

SCD 6 years

Sphincter of Oddi dysfunction 6+ years

neurological & spinal deterioration 3+ years

[Guest guest]

Rest up. Feel better. One thing, sounds like tomorrow just about has to be a better day!Thanks for the well wishes everyone =) I do feel much better today, although still having D =( At this point we're definitely betting that it was side effects from the iron, since I threw up twice. That was sort of the deciding factor. I NEVER vomit with new foods, although I might if I ate an entire Teeter birthday cake. But that's beside the point. The doctor finally called back yesterday and said we should go to the ER so they could keep an eye on me, and possible give me another IV for dehydration. But we really didn't want to do that. Luckily one of my mom's really good friends is our GP and she happened to call just then, and she just told us to keep an eye on my pulse and BP to make sure I wasn't getting too dehydrated. We have a BP machine, which comes in handy, so we could monitor me. I made my own little electrolyte drink with diluted grape juice and a pinch of salt (not comfortable with using baking soda) and I was able to get down a banana for potassium. This morning my BP and pulse is normal, so we think I'm over the hump =) Holly, that's really odd that you only react to the first infusion. Is this iron, or something else? At this point you'd have to truss me up and drag me to the hospital to make me go through THAT again., hearing that you pass out too made me feel better =) I guess it's more common than you'd think, although it's still sooo annoying.Thanks again everyone! Peace =)Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 35 mg 1x per day

[Guest guest]

Heya Alyssa,

So sorry you went through this.

I have had a couple of different types of Iron infusions in the past (I had

anemia for years and years). I always reacted. One reaction is similar to what

you described. Happened twd the end of the drip.

I cannot handle iron pills at all either.

After learning about SCD I felt really blessed in some warped way to react to

iron in such a way because the iron itself is so detrimental to gut ecology and

healing.

Jodi

[Guest guest]

Did you only have to get the one infusion? If so, lucky you!

I have a bad feeling I may need another round in the next month or two. I though

I'd try taking an illegal " Gentle Iron " pill every couple of days to see if I

could get my ferritin levels up before then. After 4 days (and 2 pills), I

developed new intestinal issues that lasted 3 days. Coincidence? Probably not

:-(

Glad you're feeling better!

Holly

Crohn's

SCD 12/01/08

>

> Holly, that's really odd that you only react to the first infusion. Is

> this iron, or something else? At this point you'd have to truss me up

> and drag me to the hospital to make me go through THAT again.

> Peace =)

> Alyssa 16 yo

> UC April 2008, dx Sept 2008

> SCD June 2009 (restarted)

> Azathioprine 50 mg 1x per day

> Prednisone 35 mg 1x per day

>

[Guest guest]

Did you only have to get the one infusion? If so, lucky you!Well, I'm technically supposed to get a second one, but there's NO way I'm going through that again! They're gonna have to give me iron shots or something. Peace =)Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Azathioprine 50 mg 1x per dayPrednisone 35 mg 1x per day