Hello - Malnourished and Eating Like a Horse

[DSRIGGS]

Well Hello Scott and let me be the first to say Welcome!
I will be following this thread because I also have had some problems with malnutrition so I will be interested in all the answers you get. I don't though have any real help or answers to give.
That being said I know you are in the right place to get the answers you need. I will also say that no one has changed on the way they give advise so as the logo above says Buckle Up for Candor and be prepared for it. You will not find any other sight that has the vets that have the knowledge to help you.
So hopefully everyone can start over and get you the advise you so desperately need. My only question is Dr. K aware of all your problems and given any suggestions?

Hi Barb...great to see you and look forward to the advice from here..and I have no doubts there will be "strong candor" here....I expect nothing less.

 

[DSRIGGS]

I have not read your post yet but wanted to welcome you. good to see you here. Will comment late when I have a chance to read the entire post.
Best,
Whit

HI Whit...good to see you again..thanks and look forward to it.

 

[DSRIGGS]

So, what does MARSHALL say about this? Or does this mean you are no longer working with him?


If it were me, I'd be pushing for TPN to get my levels up and balanced internally ASAP, and then tweak things to figure out how to maintain them just on food and Creon supplements. You may be able to get there without TPN, eventually, but in the meantime, you probably WILL feel like shit. I'd want to get past that misery NOW. And being in protein malnutrition means you are cannibalizing your irreplaceable muscles, including those in your heart.

I'm shocked that your surgeon let things get so far out of balance without offering you appropriate help - Creon is the well-known way (well, well-known to EXPERIENCED DS surgeons anyway) to slow, stop and reverse the malabsorption while the body settles down. And almost everyone who slips in malnutrition eventually does. You may need to take Creon for months - maybe even 18 months or longer - and then can taper off.

A revision should be the very LAST thing to consider - because in 5 years, or 10 years, you're going to be glad you didn't.

At some (high) level, eating excess fat without Creon causes more problems than it fixes - literally, greasing the skids and making it more difficult for fat - and other nutrients - to be absorbed. Similarly, excess protein - to the extent it is absorbed past the point that the body can process it - results in stress on the kidney, to break down the amino acids and excrete the excess nitrogen. It would seem to me that eating AND DIGESTING more complex carbs, with the assistance of Creon (to mitigate the side effects of malabsorption and feeding the gut bacteria) would be the best to get your caloric nutrition in balance. You still will have to eat a lot, because even with Creon, you still have a short (250 cm or so) alimentary tract.

But I am not a medical doctor.

I saw what happened over on the other board. No other comment (here) is necessary.

Hey Diana...thanks...We are on the same page...revision is not even in my thoughts now, and yes I am going to push the TPN with my GI or if he won't my GP. It is confusing and frustrating seeing mulitiple specialists (surgeon and I didn't see Marshall in hospital it was his residents before and after marshall did the the hernia repair...so that is why it wasn't addressed...marshall is very sharp and I should have demanded to see him...and honestly I didn't see my labs before I left the hospital after surgery or I would have made them do something).

I am going to keep pushing on the TPN route and my Heme wants labs every 30 days and to follow with my GP. If RBC's don't reverse trend then she wants to see me again and will move to marrow analysis..but for now she believes the malnutrition is driving everything..so hitting the CREON hard, I do eat a pretty significant amount of complex carbs and am cognizant of that need, and really upping the Zinc (it was in range and then tanked) and starting on copper (same there).

and I do realize the CREON will be for a while....I am hoping though that my absorbtion naturally increases over this next 1-24 months and that I can taper.

Thanks for the welcome and advice...much appreciated (all of you if I miss anybody).

 

[DSRIGGS]

I don't have much to add and am not an expert in anything, but this sounds like your literally shitting everything out. Is there frequent diarrhea? I've had one antibiotic that threw my system into stinking, farting, pooping chaos, and then another to get me so I could get things back in balance, but you need to keep things in you for long enough to even have a chance to absorb anything at all. It looks like they are looking at just about everything, so I assume they've already considered something so obvious.

Hi Bear Mom (sorry I can't remember your name...hell to get old)

Honestly I didn't have much diarrhea. I would have some loose stools and if I ate too much fat the lovely oil slicks, but I would have maybe one time of diarrhea every 5-7 days (just go once, like a clean out and back to loosely formed to form). The other crazy part it that my weight loss really pretty much stabilized at the 173-177 range for basically the past couple months (I am a pencil necked geek at this point....my Avatar pic is from June and I was 15 pounds heavier then)..

 

[JackieOnLine]

hello, Scott!

 

[DSRIGGS]

Hey Scott. I just had a 3 month long malnutrition episode. Everything was deficient on me. My protein was at 1. I was so weak kept falling I ended up in hospital 6 weeks and rehab for 5 weeks. I couldn't walk or do anything for myself. I was put on TPN. It has really made a change for the better. I will be on TPN till January 1 to build up some reserves. Don't let it get too far out of hand boy will you be sorry. Good luck

Holy Heck Hon!

Sorry to hear you have had such a struggle but glad to hear there is light at the end of the tunnel. I am going to push hard for the TPN but I am sure I am going to get the "it isn't that bad yet" line....to which I will respond I am too dizzy to drive to work and feel like passing out all the time, what the hell would suggest to you that it "isn't that bad yet, now buck up and let's address this issue so I can move on with my life".

Quick question on TPN. Do you have a port and how long does it take? I assume one can still eat while doing TPN, right?

Thanks and my best wishes to you for a speedy recovery.

 

[DSRIGGS]

Hi Scott!! Hey bud, I was hoping you'd come over here! I cant help you any on the med stuff, SO many experts over her that can though! I just wanted to say hi and welcome and convey just a teeny tiny piece of my mind regarding the "Past". First of all, I could give a fat rats ass about any of you'lls past history when it pertains to any negative in fighting. I don't come on any of these 3 sites that I visit to fight, get in cliques as if we were still in high school and be "Bullied" by anyone...its not happening! I know how to use the Google search engine quite proficiently and do understand a LOT of the history, good and bad between a lot of these members from all 3 sites, and again....as a new person, I don't want nothing to do with any of it, I just want to absorb every bit of knowledge that I can and hopefully have a little fun and entertainment along the way and maybe even make a friend or two, three at the most...lol!

That being said.....I absolutely love this site! You can say what you want, when you want and people will come right back at you, especially that Spiky B Lady ...BUT it is NOT in a condescending, this is my site, me and my girls are in charge kind of way. A lot of the candor is laced with pragmatic realism and most importantly for me FACTS, not just opinion, I know you know what I mean! I've always said that sometimes our written words are many times not taken in the context they were meant, because it is really hard to express emotion and feeling and intent in the way we write, so I try to give everyone the benefit of the doubt. We are all different, but have one VERY important common denominator and having access to this kind of REAL medical knowledge is an absolute nessecitty, so, again, WELCOME!!!

Rob

Hey Rob good to hear from you and see you here. As we discussed on the other site there are so few males on these boards it is good to get the male perspective as our bodies are different.....obviously that doesn't discount the female perspective as it is all valuable...but it nice to have a compadre.

Regarding the past, I agree completely. I just wanted to be in full disclosure because I may have made a comment or two when the spit happened. You may have noticed I am not shy. That being said, I am done with the past and that stuff..nothing more needed to be said.

and I know a great many of these folks over here and know exactly what you are talking about from support to candor. I am good with candor and as you said, these forums are also about social network as well even if the main focus is on medical/living with DS support...so it is nice to have a strong community where we get all levels of support from emotional, to friendly chatter about non DS things (in the appropriate forum), medical advice based on history, shared learning, nutritional advice including supplementing, etc.

 

[DSRIGGS]

TPN sounds prudent.

Just to share my experience in case you find similar side effects, I was on Creon from February 2013 until a few months ago. I needed Creon because I lost half my pancreas to cancer (a year after DS). My experience was that Creon helped with protein absorption, but at a cost. It made it very, very difficult to handle certain foods, including grains of any sort. I could not tolerate any wheat, rice, quinoa, oats, etc. and many vegetables and fruits while I was on it, without horrible intestinal effects. (This was an issue because I have fainting issues and need carbs.) I was at very high dose, 72,000 units (three 24,000U pills) with every meal or snack...

I hope your nutritional status improves swiftly.

Hi Hilary,

sorry to hear about your battle but it sounds like you are doing well now. So far I have not had any issues with any foods. Since about 9 months out I have been able to eat just about anything with no intestinal distress. That being said, I will be mindful of your warning and watch for any issues with certain foods. I will say that it has definitely made pooping different so far. Things don't flow as smoothly and without all the fat coming through that makes sense, but I get some rectal irritation/discomfort and sometimes feel like things are stuck (I assume we talk poop here too so sorry if being too graphic but it is what it is). I figure that is a matter of modifying the diet and I guess if need be I can eat something really fatty with no creon or maybe start a mild laxative like a mirrilax.

and I too am on 72K at meals but 36 at snacks....just really getting dialed in so if I see I need more with snacks I will do so.

 

[DSRIGGS]

@DSRIGGS, Hi Scott...glad you came over and are posting. I agree, TPN sounds like your immediate solution. Get that sorted out.

Throwing this out here...is it possible that your system would have done this anyway and the DS just made it obvious? Can I assume you have copies of all your lab work, both pre-op and post op and are tracking it to see trends?

I realize it's "obvious" to assume that anything to happens to our gut or stomach AFTER the DS is because of the DS...but that's not always true. In other words, think outside the box. I hope you do find the solution.

Hi Liz,

I do miss our chats from the past so good to hear from you. Hopefully you recovered well from you last spine surgery and things are better.

I think it is quite possible that what you are saying could be true. Dr Prager my hematologist is checking antibodies to make sure something else isn't going on. I am not convinced the anemia isn't due to non DS, non absorption issues as the root cause (sure the malnutrition isn't helping). As you know my oldest Cameron had Lymphoma so if I have marrow issues it wouldn't be a complete shock (as a parent you always go through the, "Did I give him that disease" thought process).

and yes I track labs from pre and post.....although I don't have too much data from before. Both of the local hospitals are on EPIC an have portals that keep lab values and allow for tracking, as well as my heme's group (Illinois Cancer Care)....so this is very convenient as I can pull up a chart or data trend for whatever period I want to view.

 

[Spiky Bugger]

Hi Scott!! Hey bud, I was hoping you'd come over here! I cant help you any on the med stuff, SO many experts over her that can though! I just wanted to say hi and welcome and convey just a teeny tiny piece of my mind regarding the "Past". First of all, I could give a fat rats ass about any of you'lls past history when it pertains to any negative in fighting. I don't come on any of these 3 sites that I visit to fight, get in cliques as if we were still in high school and be "Bullied" by anyone...its not happening! I know how to use the Google search engine quite proficiently and do understand a LOT of the history, good and bad between a lot of these members from all 3 sites, and again....as a new person, I don't want nothing to do with any of it, I just want to absorb every bit of knowledge that I can and hopefully have a little fun and entertainment along the way and maybe even make a friend or two, three at the most...lol!

That being said.....I absolutely love this site! You can say what you want, when you want and people will come right back at you, especially that Spiky B Lady ...BUT it is NOT in a condescending, this is my site, me and my girls are in charge kind of way. A lot of the candor is laced with pragmatic realism and most importantly for me FACTS, not just opinion, I know you know what I mean! I've always said that sometimes our written words are many times not taken in the context they were meant, because it is really hard to express emotion and feeling and intent in the way we write, so I try to give everyone the benefit of the doubt. We are all different, but have one VERY important common denominator and having access to this kind of REAL medical knowledge is an absolute nessecitty, so, again, WELCOME!!!

Rob

I have had the pleasure of never interacting with this dude (although I have observed some previous interactions) and, since I have no insight to his medical issues, will probably just keep it that way.

 

[southernlady]

Hi Liz,

I do miss our chats from the past so good to hear from you. Hopefully you recovered well from you last spine surgery and things are better.

I think it is quite possible that what you are saying could be true. Dr Prager my hematologist is checking antibodies to make sure something else isn't going on. I am not convinced the anemia isn't due to non DS, non absorption issues as the root cause (sure the malnutrition isn't helping). As you know my oldest Cameron had Lymphoma so if I have marrow issues it wouldn't be a complete shock (as a parent you always go through the, "Did I give him that disease" thought process).

and yes I track labs from pre and post.....although I don't have too much data from before. Both of the local hospitals are on EPIC an have portals that keep lab values and allow for tracking, as well as my heme's group (Illinois Cancer Care)....so this is very convenient as I can pull up a chart or data trend for whatever period I want to view.

LOL, Spine healed nicely! BUT I have had two surgeries since unrelated to my spine. Currently recovering from surgery number 2. Threads are here, the one this spring and then the newest one.

Glad you have someone thinking outside the box. And keep an eye on trends...it's how I caught MY anemia.

Okay, quick tip...there is a feature here called multiquote. Hitting reply only quotes one BUT if you hit the word +Quote next to it (below the box on the right between the Like button and the Reply button), you can quote SEVERAL posts at the same time...they get added and then when actually ready to write, you click under the reply box on the left side that says "Insert Quotes", you will get an overlay that says, do you want to quote these, if so, click yes, and then go forth and reply!

For an example of what it looks like.

 

[Larra]

Hey, you're finally here!

I'm sorry you are having such a bad time of it. It sounds like you are finally (!) getting the help you need, at least some of it, for this serious problem. I have just a couple little suggestions:

1. If your docs absolutely refuse to try TPN, there is an alternative called PPN, where the first P stands for peripheral. The difference is that you can't give full TPN through a peripheral vein, it has to be delivered through a central vein, where as the PPN is not as concentrated and can be given peripherally. It would therefore give you less nutritional support than TPN, but still significant support, to go along with the nutrition you are getting through your intestines. It's not an alternative for, say, someone in the ICU who can't eat at all, but for you it might be another measure of support, and your docs would be less concerned about your safety. Just something to consider.

2. Copper deficiency can cause a non-iron deficiency anemia, so at least part of your anemia could be related to your low copper level. However, of course I can't say this is the case, esp since you have so much else going on, but it could be a contributing factor. Be careful with working on your zinc level, because excess zinc can cause copper deficiency. But since you are presently low on both, you will need to replace both.

I think the Creon should be very helpful. It has saved other people from having revisions. Stick with it, and stick with us. We aren't a substitute for your doctors of course, but we often have some good suggestions. And some fun, too.

Your old friend, Larra

 

[DSRIGGS]

Hi Larra...so good to hear from you!

Thanks for the information and advice. I will be honest the TPN kind of scares me a bit as I see a lot of information about infection (and 15% of those people die), but I guess the risk has to be balanced against the benefit. My assumption is that the 15% who die also have other severe complications so I can see that number being inflated.

A few quick question on TPN vs PPN.

1. Is TPN typically through a port like chemo is delivered? I would think I would prefer a port to a vein as those get pretty sore with IV stick all the time.
2. Can I be on TPN and still eat, or only eat if on PPN? I don't want to stop eating, I just want a boost to get me right so I can get back to "normal life" and not lose my job or opportunity for promotion being that medical case guy.
3. Would I pretty much hooked up to an IV bag all day and therefore stuck at home? I am not able to work right now since I get too dizzy to drive and have waves where I feel like passing out at times (comes and goes) so I am kind of home bound anyway but just wondering.

I am uploading my latest labs from the Heme(drew them last Friday). Please note that this draw was not looking for all supplements but a few specific things so it was not designed to look for A, D, etc. As you will see, quite few things are out of whack and a few I don't understand ...like IG%..that whole area confuses me, but I see I am 4 times the high limit. Also ALT is 4 times...Anion Gap is low again....

Thank you and again, glad to be back in touch

Scott

 

[Charris]

Scott I have a picc line. Yes I still eat. The Tpn is just supplementing what I can get in. Mines has 100 grams of protein. They take my blood once a week so when yhey make my bags for the next week they can add or take away what is needed according to my levels. Home Health comes once a week to do blood, change dressing, and do vitals.
Originally I was on tpn 24 hours a day. They just changed it to 16 hours on and 8 hours off. Same TPN just running it in at a faster rate. It used to be 70mg per hour now its 100 mg per hour. Me and my family do everything else ie: put vitamins in the bag, maintaining the line with Heparin, changing the bags. Its pretty easy everyone in my family learned how to use the machine and how to get me on from start to finish.
The er docs had released me to go to rehab. I was there 2 days and dr. K called and told them rehab alone wasnt going to get it send me back to Er for TPN. Is your bariatric doc saying your not bad enough yet? You shouldn't have wait and suffer till you get bad enough. I became non responsive and the drs in er told my family I was going to die. My entire body filled with blisters who wants to go through that?
I hope they help you before you end up begging them to let you die like I did...
I have a backpack for my TPN so if you need to go out.

 

[DSRIGGS]

Scott I have a picc line. Yes I still eat. The Tpn is just supplementing what I can get in. Mines has 100 grams of protein. They take my blood once a week so when yhey make my bags for the next week they can add or take away what is needed according to my levels. Home Health comes once a week to do blood, change dressing, and do vitals.
Originally I was on tpn 24 hours a day. They just changed it to 16 hours on and 8 hours off. Same TPN just running it in at a faster rate. It used to be 70mg per hour now its 100 mg per hour. Me and my family do everything else ie: put vitamins in the bag, maintaining the line with Heparin, changing the bags. Its pretty easy everyone in my family learned how to use the machine and how to get me on from start to finish.
The er docs had released me to go to rehab. I was there 2 days and dr. K called and told them rehab alone wasnt going to get it send me back to Er for TPN. Is your bariatric doc saying your not bad enough yet? You shouldn't have wait and suffer till you get bad enough. I became non responsive and the drs in er told my family I was going to die. My entire body filled with blisters who wants to go through that?
I hope they help you before you end up begging them to let you die like I did...
I have a backpack for my TPN so if you need to go out.

Thanks CV an so sorry to hear of your struggles...that stinks

Couple questions:

• Can you shower with a PICC line? I guess I am wondering why they didn't implant a port?
• You mention the backpack, that is cool. I am wondering if I could go to work with that or if would be too cumbersome for that time period (assuming I was feeling well enough to go to work)?

I have not broached TPN with my Surgeon's office because it is my GI who is prescribing the Creon and who I will go to with my TPN questions. Frankly I am not going to be using my surgeon's office for anymore lab follow up. Great cutter but I am not happy with their reaction to my hospital stay and not doing anything about my protein counts earlier.

I am getting ready to call my GI and ask about TPN.

Thanks and heal quickly dear!