Hello - Malnourished and Eating Like a Horse

[DSRIGGS]

Hello - I am a DS'r who is roughly 14 months out from surgery and I have gone from 361 pounds pre-op to 173--177 now. The weight flew off in the beginning and for the first 3 months I ate very little, but at about 6 months I really began to eat a great deal of food....more than most DS'rs from what I am told. In fact I eat at least 250 grams of protein daily, as well as probably 175-200 carbs a day (try to do a lot of veggies, some whole grains and try to stay away from simple carbs too much, but I won't lie I do have some).

Yes I am Scott IlliniDS from the other board and was outspoken, in fact didn't like the way the break off of this board happened. Now that we have that out of the way, I am here looking for support socially/personally and from a medical/living with DS perspective.

Okay, so to my current issues. I have felt very weak and fatigued since day 1 of this journey and it has gotten significantly worse. I supplement strongly and have had labs at least every 3 months and started noticing the beginning of a downward trend with Albumin, Total Protein, Hemoglobin, Hematocrit (Yes I am anemic, but not iron deficient and I am seeing a hematologist) and after an emergency hernia repair the end of September (Peteresen Defect) I found out my Zinc was low (it was not in previous draws). As I mentioned above I eat a ton of protein daily and yet my Total Protein and Albumin continued to drop. My surgeon's office did not even think me low protein and Albumin was an issue (4.8 and 2.5 respectively) so I had to push it with my GI who ran a fecal fat test which came back incredibly high showing extreme malnutrition which my lab values obviously backed up. Additionally I was told by surgeon's office to go on Iron for anemia even though my ferritin was fine (nearly 300) and they didn't even test any other iron components (I had them tested and they were fine)...so I found out on my own that I was not iron deficient anemic.

In any case I was in the hospital 7 of the last 15 days as I was very dizzy, weak, fatigued, lower legs increasingly ache, unbalanced, nauseous, and my heart rate was dipping into the 30's and my BP was also very low at around 80/40. The hospitalist did a cardio work up including an echo and the ticker is fine, so he finally agreed that I needed to go on CREON to address the spiraling downward trend for Tot Protein and Albumin. He put me on one 6,000 unit pill of the Pancreatic Enzyme with meals, and then his replacement a couple days later took that up to 18,000 units with meals and 6,000 with snacks. A few days later when I got out of the hospital my GI's office called me saying the results of the fecal fat sample were back and I needed to go on 72,000 units with larger meals (max dose) and 36,000 units with smaller meals. This was roughly a week ago and although I haven't gained any weight (and I wasn't losing significantly for the 2 months before..just weak and fatigued with protein numbers dropping) I am pretty confident the CREON is doing what it is supposed to because I am not having oil slicks and my poop is more solid/less oily.

My hematologist whom I saw today to review labs she drew last Friday to investigate my anemia, told me that the issues I am having are due to the malnturition and that until I can get caught up that I will probably continue to be anemic and struggle to get my Zinc (0.47 on 0.66 - 1.1 range) and Copper (Copper just slightly out of range ...0.72 with ref range of 0.75 -1.45) up. That being said I double my zinc tonight so I will be taking 200mg per day and am starting with 2mg of copper a day. If my RBC's (3.5) don't come up in month the Doc is going to do a bone marrow aspirate/biopsy to check production and possible issues/causes.

A question I have for any of you with any history of malnutrition. With such low Total Protein and Albumin numbers I am told it is a slow go to get back in range. I am getting ready to call my GI (not scheduled back until December, 11) to see if TPN is an option to boost me back to a normal range and then use the creon for maintenance. Thoughts on if that is possible? When I spoke to the hospitalist about TPN she was fearful of complications and didn't think it was a good idea, or what it would do for me. Any ideas/history in this regard?

I really feel like hell right now and am having difficulty driving and working so I need to get well quickly. The malnutrition is creating a host of issues and I believe is the root cause for almost all of my medical issues right now, so I want to address this as quickly as possible and am hoping I don't have to wait for the total protein to come up by better absorption from the CREON enzyme (hoping some infusion based therapy can get me up to range quickly).

Thanks for the input and sorry for the book.

and hello to many of you that I know from the past...good to see many of you are here.

 

[brooklyngirl]

Hey Scott, obviously there was drama and shit talking here and there, but I'm sorry you're going through this. Medically speaking, I have zero to offer (I don't know much about the finer details of nutrition, except what I've learned since surgery) but I hope you find the answers you're looking for and can get past this.

 

[Barb1]

Hello - I am a DS'r who is roughly 14 months out from surgery and I have gone from 361 pounds pre-op to 173--177 now. The weight flew off in the beginning and for the first 3 months I ate very little, but at about 6 months I really began to eat a great deal of food....more than most DS'rs from what I am told. In fact I eat at least 250 grams of protein daily, as well as probably 175-200 carbs a day (try to do a lot of veggies, some whole grains and try to stay away from simple carbs too much, but I won't lie I do have some).

Yes I am Scott IlliniDS from the other board and was outspoken, in fact didn't like the way the break off of this board happened. Now that we have that out of the way, I am here looking for support socially/personally and from a medical/living with DS perspective.

Okay, so to my current issues. I have felt very weak and fatigued since day 1 of this journey and it has gotten significantly worse. I supplement strongly and have had labs at least every 3 months and started noticing the beginning of a downward trend with Albumin, Total Protein, Hemoglobin, Hematocrit (Yes I am anemic, but not iron deficient and I am seeing a hematologist) and after an emergency hernia repair the end of September (Peteresen Defect) I found out my Zinc was low (it was not in previous draws). As I mentioned above I eat a ton of protein daily and yet my Total Protein and Albumin continued to drop. My surgeon's office did not even think me low protein and Albumin was an issue (4.8 and 2.5 respectively) so I had to push it with my GI who ran a fecal fat test which came back incredibly high showing extreme malnutrition which my lab values obviously backed up. Additionally I was told by surgeon's office to go on Iron for anemia even though my ferritin was fine (nearly 300) and they didn't even test any other iron components (I had them tested and they were fine)...so I found out on my own that I was not iron deficient anemic.

In any case I was in the hospital 7 of the last 15 days as I was very dizzy, weak, fatigued, lower legs increasingly ache, unbalanced, nauseous, and my heart rate was dipping into the 30's and my BP was also very low at around 80/40. The hospitalist did a cardio work up including an echo and the ticker is fine, so he finally agreed that I needed to go on CREON to address the spiraling downward trend for Tot Protein and Albumin. He put me on one 6,000 unit pill of the Pancreatic Enzyme with meals, and then his replacement a couple days later took that up to 18,000 units with meals and 6,000 with snacks. A few days later when I got out of the hospital my GI's office called me saying the results of the fecal fat sample were back and I needed to go on 72,000 units with larger meals (max dose) and 36,000 units with smaller meals. This was roughly a week ago and although I haven't gained any weight (and I wasn't losing significantly for the 2 months before..just weak and fatigued with protein numbers dropping) I am pretty confident the CREON is doing what it is supposed to because I am not having oil slicks and my poop is more solid/less oily.

My hematologist whom I saw today to review labs she drew last Friday to investigate my anemia, told me that the issues I am having are due to the malnturition and that until I can get caught up that I will probably continue to be anemic and struggle to get my Zinc (0.47 on 0.66 - 1.1 range) and Copper (Copper just slightly out of range ...0.72 with ref range of 0.75 -1.45) up. That being said I double my zinc tonight so I will be taking 200mg per day and am starting with 2mg of copper a day. If my RBC's (3.5) don't come up in month the Doc is going to do a bone marrow aspirate/biopsy to check production and possible issues/causes.

A question I have for any of you with any history of malnutrition. With such low Total Protein and Albumin numbers I am told it is a slow go to get back in range. I am getting ready to call my GI (not scheduled back until December, 11) to see if TPN is an option to boost me back to a normal range and then use the creon for maintenance. Thoughts on if that is possible? When I spoke to the hospitalist about TPN she was fearful of complications and didn't think it was a good idea, or what it would do for me. Any ideas/history in this regard?

I really feel like hell right now and am having difficulty driving and working so I need to get well quickly. The malnutrition is creating a host of issues and I believe is the root cause for almost all of my medical issues right now, so I want to address this as quickly as possible and am hoping I don't have to wait for the total protein to come up by better absorption from the CREON enzyme (hoping some infusion based therapy can get me up to range quickly).

Thanks for the input and sorry for the book.

and hello to many of you that I know from the past...good to see many of you are here.

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?

 

[brooklyngirl]

Ya know, on second thought, it sounds to me that there might be something going on more than, or in addition to, the lack of adsorption from your switched intestines. I haven't been around as long as the vets, but the stories of malnutrition that I've read on various sites, groups and boards, seem to happen because people were given terrible nutritional advice and didn't know to eat enough protein and take enough supplements, or people that were so ill that they couldn't eat enough to keep up. Has anyone seen examples of people able to eat 250+ grams of protein per day and still be dropping?

 

[star0210]

Hi Scott...I'm sorry you're having so many issues. It's got to be really frustrating! I've got nothing to offer...I haven't been switched yet.

I'm new here and im also a new member on the other boards. I know nothing about the history except that apparently there is one but I wanted to say I read your post and all the comments over there and I think you definitely got the short end of the stick. I don't think they treated you fairly at all and I thought you handled it well without getting nasty or ugly. I just wanted to let you know that.

I hope you get to the bottom of your medical issues and get healthy!

 

[Whit]

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

 

[DianaCox]

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

My surgeon's office did not even think me low protein and Albumin was an issue (4.8 and 2.5 respectively) so I had to push it with my GI who ran a fecal fat test which came back incredibly high showing extreme malnutrition which my lab values obviously backed up. Additionally I was told by surgeon's office to go on Iron for anemia even though my ferritin was fine (nearly 300) and they didn't even test any other iron components (I had them tested and they were fine)...so I found out on my own that I was not iron deficient anemic.

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.

 

[bearmom]

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.

 

[Munchkin]

I second Diana on the TPN and the Creon. It's very much worth trying even if you only bag it 12 or so hours a day. Your TPN should be mixed for you so it would be easy to add extra zinc, salts, etc. They should be able to mix up exactly what you need.

Welcome to the board.

 

[SHales]

I third what Diana said. I would want the TPN. While there is some risk to having a port for the TPN, it is quite small compared to what else is happening with you protein-wise. Hopefully the hema doc can figure out the anemia. You may have a small internal bleed somewhere if your iron #'s are good.

 

[Charris]

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

 

[robs477]

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

 

[hilary1617]

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.

 

[southernlady]

@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.

 

[DSRIGGS]

Hey Scott, obviously there was drama and shit talking here and there, but I'm sorry you're going through this. Medically speaking, I have zero to offer (I don't know much about the finer details of nutrition, except what I've learned since surgery) but I hope you find the answers you're looking for and can get past this.

HI Lauren..good to hear from you. Hope all is well....It is good to see so many familiar faces over here so I am going to enjoy catching up and look forward to the dialogue.