protein deficiency and leg swelling

jndrake
on 11/3/17 3:07 pm - Charlottetown, Prince Edward Island, Canada
VSG on 12/10/13

Hi, I just got my first set of labs -3 month labs- done. I am good in all vitamins but low in my albumin and pre albumin. My legs, ankles, and feet are swelling pretty bad. I know I have not been keeping track of my protein so I am now going to count it and try for at least 100 grams a day. My question is has anyone else experienced this and how long did it take once you upped your protein to get the swelling to stop?

"You're off to great places today is your day your mountain is waiting so get on your way.Oh the Places you'll go" Dr.Seuss

larra
on 11/3/17 4:03 pm - bay area, CA

It's crucial not to let yourself become protein deficient, and much easier to maintain a good level than it is to catch up once you fall behind. Remember that you can use any form of protein, not just lean protein with the DS, so you do have lots of options. Use protein drinks, at least for the short term, to help you catch up. Make sure your surgeon also knows what's going on.

If you don't improve, you may need IV nutrition as a temporary measure to prevent severe complications. But if you can possibly avoid that, you'll be much healthier and happier.

Larra

Valerie G.
on 11/6/17 5:17 am - Northwest Mountains, GA

So right out of the gate, you're not paying attention to your health? You've got a long way to go, and there is no time to malnourish yourself. Like Larra said, it's easier to keep on top of your levels than to bring them back up. In my own experience with D. Low D contributes to bone strength, calcium absorption, immunity and mental well-being. My surgeon's advice was not sufficient and my labs continued declining my first year because she wasn't aggressive enough. I started paying attention to what was shared by other DSers and started taking what they did, and it took a year to get my levels from a single digit to where it needs to be.

So, let's take your protein neglect into perspective. Your legs are swelling. You may not think it's that big of a deal, but consider this: You will be experiencing telogen effluvium soon, within the next couple of months. This occurs when the hair's growth cycle reboots and new follicles push out the old. Many people experience much healthier hair when it comes in, a benefit of the extra attention to nourishment. Being protein malnourished, though, yours may be a different experience. Your hair may come in damaged, brittle and lifeless, or it may not come in at all since it's condition is dependent on protein. You may notice that you just can't seem to perk back to your old self. You may start losing teeth next, perhaps after winter. Finally, when your body isn't getting the energy it needs from protein, it starts harvesting your organs to keep you going. That's the last point.

So what's it going to take to get you thinking about your needs seriously? Will it be looking like a chemo patient? Will it take breaking your rib bones during sex for D deficiency (that's what made a friend change her ways)? Will it take numbness or phantom pains in your fingertips and other limbs as permanent damage from B malnutrition or maybe blindness? These are all real things that have happened to real DSers that didn't take this seriously.

You may think I'm being too harsh, but I am for a reason because this is serious, and I fear more problems for you down the road if you don't take matters into your own hands. You may not be finding any pleasure or satisfaction in food right now. It's not a reason to starve yourself. Instead, it's a reason to not be seeking pleasure, but to be simply feeding your body nourishment. Make it nothing more than that. For a while, I had to eat by alarm because I didn't feel like eating anything either. I hated protein drinks, too. They were like poison to me. I found something that was godawful, but I could chug it down like a shot glass, make a face and go on. I learned to eat strategically, learning the biggest protein values in food, and since I wasn't eating for pleasure, I concentrated on those. I was able to kick protein shakes and horrible protein bars to the curb in about 6 months and get 100g of protein with just food. I ate every 2 hours or so (still do), but darnit, I did it. There's no reason you can't do the same thing.

The next thing is supplementation. Most surgeons and nutritionists don't give good advice of what a DSer really needs and they try to roll us into all the other surgery types. We are very different in what we need, and only a couple of surgeons actually get that. Vitalady.com has a regiment for DSers that gets you to a great start. It's not a multi-vitamin and it's not designer bariatric either. It's a collection of everything we need and maybe even overkill for some. You start to tweak what you take based on your lab results along the way. Once you know it well, you can start ordering from anyplace you like and piecing your own regime together. I highly recommend this!

Valerie
DS 2005

There is room on this earth for all of God's creatures..
next to the mashed potatoes

jndrake
on 11/6/17 5:27 am - Charlottetown, Prince Edward Island, Canada
VSG on 12/10/13

Hi, as I mentioned in my post my labs all came back ok, actually I have gone up in D and B since pre surgery. I had asked how long anyone with low protein found it would take for the swelling to subside. I am going to the bathroom 10 times a day so that might be one of the reasons for my low protein. Happily after upping my protein for just about a week, I have found my swelling to go down and I have lost 5 lbs which was probably due to the extra fluid. I think if people are going to respond like this to a question such as mine it might make people think twice about asking a question. As an educated/professional/adult/parent I feel I deserve a bit more respect.

"You're off to great places today is your day your mountain is waiting so get on your way.Oh the Places you'll go" Dr.Seuss

larra
on 11/6/17 9:31 am - bay area, CA

I'm glad you're doing better.

While Val's response to you may seem strongly worded, I didn't see it as disrespectful at all, and I hope you won't stop asking questions. You are early out and there is so much to learn, and as she pointed out, most surgeons don't give adequate nutritional advice to their patients who have the DS. Either they lump us in with people having gastric bypass and sleeve, or just minimal advice. Either way, inadequate. I'm 11 years post-op and I still learn from other DS patients, and I am also a very well educated professional adult. There is no shame in that!

Val and I have both been around for a long time. We've seen what happens to people who don't take DS post-op nutrition seriously, or who do take it seriously but never got the right information to know there needs. It isn't pretty, and these people suffer greatly before they get things turned around. So please take the warnings you're been given in the spirit in which they were intended, i.e. that someone took a lot of time and effort to help you even though she doesn't even know you. You don't have to like what she said, but I for one am glad she said it, both for your sake and for the sake of other pre-ops and new post-ops who may read it and benefit from it.

Larra

islandgirl55
on 11/6/17 12:57 pm

Hi, I get what you are saying. I asked a question and felt like I had my head bitten off in the past.Don't shoot the messenger but I do get it. We feel vulnerable when things aren't going well. You must be vigilant about tracking your eating. I am almost 2 yrs out and having some issues but I am always monitoring what I eat so that I am not contributing to the problem. You want to set yourself up for success and not failure. Do what your supposed to do about protein and fat. Hopefully, your health will improve.

RNY revision to Lap DS  Feb, 2016, Dr. Ayoola. 

HW 235/SW 184/CW 127

jndrake
on 11/7/17 4:28 am - Charlottetown, Prince Edward Island, Canada
VSG on 12/10/13

Ok, so I've had time to really think about what you said and I do realize that you were trying to help me. I was upset and feeling pretty vulnerable with the realization that I had let my protein slip so quickly and that I was already having issues and I got defensive. I am a revision patient so I can eat a lot more than a virgin DS'r and I probably eat a lot more than most 3 month post op's but I am still having a hard time getting all this protein in. My Doctor's office did not give me any guidelines for how much protein to get in a day. They have now since my levels are down and they said my daily average should be 77 g but with my levels being low to aim for 100g. I wonder why there are such wide discrepancies between what some doctors recommend. What are you eating to get it all in without shakes/Bars? I get a squeamish stomach thinking about protein sometimes. I guess I really have to find things I like and focus on those but I get sick thinking of eggs and chicken sometimes. I have also noticed a lack of strength in my legs, I thought it was due to the swelling but now I wonder if I've lost muscle due to the protein deficiency. I know I have to take this seriously I don't want to get really sick, I have three sons who need me. Next time I ask a question and get a dose or reality back I will wait to reflect before I respond. Jillian.

"You're off to great places today is your day your mountain is waiting so get on your way.Oh the Places you'll go" Dr.Seuss

jndrake
on 11/7/17 4:31 am - Charlottetown, Prince Edward Island, Canada
VSG on 12/10/13

Ok, so I've had time to really think about what you said and I do realize that you were trying to help me. I was upset and feeling pretty vulnerable with the realization that I had let my protein slip so quickly and that I was already having issues and I got defensive. I am a revision patient so I can eat a lot more than a virgin DS'r and I probably eat a lot more than most 3 month post op's but I am still having a hard time getting all this protein in. My Doctor's office did not give me any guidelines for how much protein to get in a day. They have now since my levels are down and they said my daily average should be 77 g but with my levels being low to aim for 100g. I wonder why there are such wide discrepancies between what some doctors recommend. What are you eating to get it all in without shakes/Bars? I get a squeamish stomach thinking about protein sometimes. I guess I really have to find things I like and focus on those but I get sick thinking of eggs and chicken sometimes. I have also noticed a lack of strength in my legs, I thought it was due to the swelling but now I wonder if I've lost muscle due to the protein deficiency. I know I have to take this seriously I don?t want to get really sick, I have three sons who need me. Next time I ask a question and get a dose or reality back I will wait to reflect before I respond. Jillian.

"You're off to great places today is your day your mountain is waiting so get on your way.Oh the Places you'll go" Dr.Seuss

Valerie G.
on 11/7/17 7:22 am - Northwest Mountains, GA

I'm glad you put some thought into my response, Jillian, because what I said truly was out of concern, and so many people pat you on the head and say it's okay without giving you a real picture of what you are headed for.

100g of protein is what you should have started with, especially with your stomach capacity. You may need 150 or more to start bringing your levels up. I know some that need that much daily. You need to realize that you are only absorbing half of what you consume, so of that 77g of what your surgeon says, you're getting a whopping 36g of protein daily which isn't nearly enough of what your body needs. If he advised low fat, you're malabsorbing 80% of the fat you consume, so everything you eat is low fat. Throw that advice out the window. The way I got 100g of protein in my first year with just food was with strategic eating. My favorite go-to food was ricotta cheese. I could add tomato and mozzerella for lasagna guts, or I could add SF pudding mix and cream and beat into a delicious pudding. I could eat the hell out of that stuff and still do. Cheese is a staple in my diet today, but I also eat a lot of red meat, bacon daily, all the things we've been conditioned to avoid that are very ri*****alories and fat.

There is a group on Facebook called Duodenal Switch Patients. Their flavor is like my own, so keep a thick skin, but there are several long-time vets like me *****ally know their stuff, and they're happy to share what we collectively have learned by sharing. We even have a couple of surgeons who are watching and not participating so they can get a better idea of our real needs.

Valerie
DS 2005

There is room on this earth for all of God's creatures..
next to the mashed potatoes

Janet P.
on 11/6/17 12:46 pm

You absolutely have to get a minimum of 100 grams of protein a day (most of us aim for at least 125, I know I do). This is something that should have been explained to you on day 1 (or even before). Protein is no optional. If you can't "eat" 100+ grams of protein, then you need to find a supplement to help you along. It's an adjustment we all have faced.

I never experienced any swelling so I can't help you with that - but that may be because I've never had issues with protein (albumin).

Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175

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