Iron Infusion #3 – Allergic Reaction

Fall 2007 was when I had my first iron infusion due to my dangerously low ferritin levels that triggered a mild heart attack. The first infusion was with Infed and while the infusion itself went fine, afterward I developed an itchy rash over my whole body and was slightly feverish. So we knew I could not use that particular iron again.

So a few months later, my levels were low again and this time we use Venofer, which is given once per week over 5 weeks, instead of in one 5 hour dose like Infed. I did not notice any side effects during my first round of infusions with Venofer, which ended in June 2008.

Now here it is January 2009 and I’m needing an infusion once again. Go in last week and get my first of five Venofer and for three days felt ‘blah': tired, ran a slight fever and generally felt unwell. I did not actually connect it to the infusion at all – because so much flu is going around, thought I was getting sick with a virus.

Fast forward to yesterday. I go in for my second round of Venofer and about halfway through the dose, started feeling ‘blah’ again: as in tired, weak, then started getting a headache, dizzy and really feeling bad. My arm was hurting where the infusion was going in. I mentioned that I didn’t feel well and what had happened last week – more as a side comment; but when she double-checked possible side-effects for Venofer initially – malaise was one. Mmmm? So she checks my blood pressure and it was way up 142/115. It was only 115/80 when I got there. She checked further into allergic reactions and I had nearly every one, except anaphalactic shock!

By the time we put all this together, my infusion was done (they only take 30 minutes). She got the IV out right away, called my doctor and he ordered steroids and tons of bloodwork. They kept me for a bit and I then went home.

We will wait on the bloodwork and I will converse with my doctor before I have any more infusions. I believe there is only Ferrilicit left to use – that’s pretty much it, as I believe most others are generics of the name brands.

I’ve read that many continue with the iron infusions, with side effects, and just take the steroids and Benedryl IV to counteract those. Not sure I’m comfortable doing that, as my symptoms seem to get progressively worse each time.

Unfortunately as a gastric bypass post-op, we especially have a nearly impossible time absorbing iron. The upper part of the small intestine is where the majority of iron is absborbed by the body – we no longer have that. So it’s difficult for us to absorb what we need with the short length of small intestine we have left. I’m 4.5 years post-op and have been battling this for about 1.5 years; even though I took iron supplements from day one after my surgery. It just isn’t enough.

If you are a gastric bypass post-op that had a malabsorptive procedure, I’d be very intersted to hear how your bloodwork is coming out and in particular what your iron and ferritin levels are and what supplements you’re taking. Getting the right form and amount of nutritional supplements is truly an art form!

Please post your comments or your experiences below.

Iron Infusion #1

Yesterday I finally had my first iron infusion.  I must say, “pumping iron” all day sure is tiring.  :P  It was an all day affair, I arrived at the hospital to check-in at 7:45 am and was back in the outpatient department by 8:00 am.  They had to start me with a test dose, to ensure that I wouldn’t have any reactions, and by the time they get the IV in, give me Benedryl, some steriods, Tylenol and get all that setup and the dose in, it was about 8:30 and then we waited until about 9:30.   So it was shortly after 9:30 am when they started my regular 4 hour long dose of Dextran (which is the same an InFed).  It was a 20ml bag, but it was diluted, so I’m not sure how much my actual dose of Dextran was – I’ll have to call my doctor and find out the exact dose on that, just because I want to know.  ;)

I dozed for a short time, because of the Benedryl, but then a nice lady came in for her infusion, so I visited with her a bit and talked with the nurse some tending to me and watched some TV.  The time went by faster than you would think.   I left the hospital around 2:40 pm.

The nurse said it could take a day or two before I would notice any difference in how I felt.  Considering that I did not sleep well last night, I’m not feeling a huge surge of energy this morning, but I think I’m feeling better than I otherwise would have.  So I guess that’s something.  I’m hoping tomorrow morning to wake up feeling much more energized.  :)

Monday morning I’ll be calling my doctor to find out what we do next:  I’m assuming we will need to do some blood work this week (?) to check to see if this one infusion brought my blood levels up to normal.   I’ve heard that many hematologists tell WLS post-ops not to take iron supplements after an infusion, but if I do not, then how can I hope to maintain my iron levels, without needing to do another infusion, if I don’t take supplements?!  So I need to do some research on that and talk to others a little more knowledgeable about that than I am.    While the infusion experience was not a bad one, I would prefer not to have to do this on a regular basis if I can avoid it.  ;)

Would I do it again?

A Dose of Reality Dished Out in Tough Love

With my recent health issues stemming from nutrient deficiencies (calcium, vitamin D and iron) ,  I’ve had several people ask me if I regret having had the weight loss surgery. My answer is a resounding: NO!  I do not regret having had weight loss surgery!!

First, I think we need to put into perspective that while I have had some health issues, and while they have had some  debilitating side effects for me, frustrating because it’s taken a while to discover that they were in fact related to nutrient deficiencies and not something else; there are people who have had much more severe complications from not only weight loss surgery but from living with obesity.  I do not regret having had this surgery.  All I need to do is to adjust my supplements – tweak the amounts I’m taking, and perhaps continue with iron infusions periodically, if I can’t maintain with supplements.  But honestly, that’s a very small price to pay to maintain my health.  YES, it’s worth it – it’s just vitamins and nutrients people:  very important yes, but not a deal breaker for me.

Note to the Pre-Op folks:  If there is one key thing I want to stress to any pre-op folks who may be reading this blog entry:  is that you need to know you will have to take vitamins and nutritional supplements for the rest of your life after you have weight loss surgery.   If you don’t – you can die. Yes, that’s a very serious statement to make; but it’s true.  If you can not afford to buy vitamins and protein powders after your surgery, then you need to seriously re-think whether or not you can afford to have this surgery; because without vitamins and protein supplements after – you will not be healthy and you can do very serious damage to yourself that could be life-threatening.   The total cost each month varies, depending on where you buy your supplements and exactly what all you take, based on the core minimum that all post-ops really should be taking and your specific lab results.    I personally spend about $200 per month on supplements, including protein powders, prescriptions and everything I need to keep me healthy (not including food).

Which vitamins and how many of each you need to take will depend on your lab work; and of course, that means you’ll need to have your labs drawn regularly.  Every 6 months is ideal for labs, then you can catch something if your levels start to drop, before they get too far down.  Once a year just isn’t often enough and some recommend every 3 months.   So maintaining your health as a WLS post-op is work; but it’s worth it to stay healthy.   If you’re taking your supplements, then it really isn’t that big of a deal if you keep it up.  It’s just part of what you do.  If you stop doing it – then believe me, it will become a huge deal very quickly.

I am normally very much an encourager,  but I believe the in telling the honest truth too.  I believe this surgery works;  but I hear of a lot of post-ops gaining and struggling years down the road with this surgery.   In almost* every instance, it was a preventable problem.   I want everyone to go into this surgery eyes wide open.  It’s a great thing – it will work, but you will have to work too.  You will have to know why you became obese.  You will have to overcome your food addictions.  You will have to exercise.  You will have to take your supplements.  If you can’t do that: then don’t have this surgery.  Otherwise, you may find yourself, a few years down the road,  obese once again, and suffering from nutrient deficiencies to boot,  and it will not be the fault of the WLS, it will be your fault for not being compliant with the guidelines of the surgery.

Your tool didn’t fail you – you failed the tool.   Only you know your own true circumstances and if you are making excuses for your situation.   Let’s get real here.  We didn’t rearrange our guts to continue to lie about what we’re eating and make excuses as to why we’ve failed at this.  Be honest with yourself.  Deal with it and work at making it right.

[*There are some cases of known surgery failures.  Where the stoma is larger than it should be, or the food is going down and the intestine is actually enlarged and creating a pseudo stomach and holding food, and all sorts of things like this.  If you believe you are truly able to eat more than you believe you should be, then make an appointment with your bariatric surgeon for a endoscope to make sure your pouch and everything else is working and intact as it should be.   ]

Supplement Central

Okay, this morning I re-organized my supplements as there’s so many they were getting a little out of control and I needed to move them elsewhere in my kitchen.  Here’s my new “Supplement Central”.

Supplement Central

How do you organize your supplements?  Do you keep them in the kitchen?  Living room?  Bedroom?   Maybe you don’t take as many as I do and it’s not an issue for you!  LOL   But with those huge jugs of protein powder, they all have to go somewhere and how convenient that the red and black on the Whey Stack containers blends in nicely with my kitchen decor.  :P

The Fine Art of Post-Op Supplements

I have come to the conclusion that finding the right balance of all the appropriate supplements for a WLS post-op is a true art form and could quite possibly be near a full-time job, with needing to take supplements about every hour or two throughout the day – it certainly requires as much time as a full-time job!! Finding the “sweet spot” of just the right supplemental balance takes work and diligence and I’m very concerned that many post-ops are falling down in this very critical area.

I’m just over 3 years post-op, and it’s my finding that I’m right at the time when many post-ops begin to notice some problems with their labs, if they haven’t already. Yet, I wonder how many post-ops are still going for their labs and taking their supplements. I frequent quite a few online message forums, where I mostly read and “lurk”, and I’m shocked to see how many are taking very little in the way of supplements and quite a few are still taking are children’s chewables and that’s pretty much it! :O

If you are a WLS post-op and had a surgery type where you malabsorb nutrients, then you need to supplement daily and more than just a couple multi-vitamins. You also need to get your labs checked every 6 months to make sure everything is staying on track and you need to do this for the rest of your life to stay healthy.

I found a sample supplement schedule on a couple WLS email groups that I’m on. It was a good place to start. I discussed it with my physician, did some research on the recommendation and we (my physician and I) both agreed in the logic found in this schedule, and need for these nutrients for me, based on the malabsorption of my surgery and my labs. So I’ve kept the core supplements, adding my own, as needed, and adjusting the dosage amounts for my needs. The end result is my own customized supplement schedule, including times and everything based on my daily life (and yes, I really do get up at 4:30 am!! LOL)

So, if you’re interested in what I’m taking, and care to use it as a starting point for yourself – here it is. This is the supplementing schedule of what I am currently taking. I just ordered the Coromega and will start taking that when it arrives, so that’s a brand new addition to the schedule for me. I will adjust what I take, based on my own personal lab results. So use this as a guide to know what a post-op should consider taking, not as medical advice. Consult with your physician, referencing your own lab work, to know what you need to be taking.

Time

What to Take

What to Eat or Drink

4:30 am

prescription Prilosec

coffee

6:00 am

calcium citrate

Vitamin D

Magnesium citrate

whey protein shake (breakfast)

8:00 am

Iron supplement(s)

Vitamin C

Coromega

Glass of water

10:00 am

Calcium citrate

Vitamin D

Magnesium citrate

Glass of water

11:00 am

n/a

Lunch

12:00 pm

Multi-vitamin

B-100 tablet

Coromega

Glass of water

2:00 pm

Calcium citrate

Vitamin D

Magnesium citrate

Whey protein shake

3:00 pm

Multi-vitamin

B-100 tablet

Glass of water

4:00 pm

Iron supplement(s)

Vitamin C

Coromega

Glass of water

5:00 pm

n/a

Supper

6:00 pm

Vitamins A&D capsule

Vitamin E capsule

zinc tablet

Glass of water

8:00 pm

Calcium citrate

Vitamin D

Magnesium citrate

whey protein shake

**Note: The quantity of each of the above may vary for you, based on your labs, so I have not listed the quantities I take.

  • I give myself B12 injections monthly, thus are not noted in the above schedule.
  • I have my labs checked every 6 months to ensure levels remain in safe and normal range.

So, as you can see, post-op supplementing a lot more involved than knocking back a couple children’s chewable vitamins a day! And by the way, you should not be taking children’s chewables, or any multi-vitamin that contains calcium and iron all in the same pill, as calcium and iron do not work well together, as far as absorption goes. And usually, the calcium found in children’s vitamins, and often in cheaper adult multi-vitamins, is the poorer quality calcium carbonate, and we need calcium citrate.

Whey protein shakes should be considered a nutritional supplement, not just something to drink with your supplements!! We don’t break down and digest protein from food the same as before our surgery; just the same as we malabsorb other nutrients – and we need to supplement vitamins, this is why we must also supplement with whey protein shakes. Read my article on this very important topic.

You can be healthy and maintain your weight loss as a post-op, but it requires diligence on your part, not just in your good eating habits and exercise, but in staying on track with the right supplements. Keep yourself educated – and stay healthy!