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04-24-2012, 03:08 PM   #1
Jenn
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Low protein

Hi,

Alex did bloodwork yesterday so my heart skipped a beat when I picked up the phone to hear his GI already looking at the results this morning, it can't be good for a personal call and so fast?!? Well, SED is lowest ever, at 2, vs. 30 last Jan before starting so Humira, so yay!

But, his protein dropped lower, and calcium which is related, apparently, and zinc a bit. She said low protein shows sign of active disease, but that inflammation isn't present, asked about any diet changes (none). He is always low on protein and we've been boosting as best we can with a picky eater. We burned him out on ensure while he was on 6MP, not worth it when he's crying/vomiting, but he eats a protein bar every day. So, that's discouraging.

I can't help head-spinning that it never seems to help by putting more in, his gut absorbs only a max amount, right? Does that mean maybe he has scarring since inflammation is low? So confusing. I can't get out of my head the flouroscopy image of his one section of strangled small intestine. I thought maybe we'd do a resection then, but no. And not sure it would be a road we'd take now.

So, now what? Well, the GI was willing to believe it's a low-point on the average and wait and see next month's blood labs. Meantime, I get to freak out all month about trying to increase his protein intake. argh. where's that stabby....
that feels better!
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Jennifer ~ son dx at age 8, Sep 2010
currently on Humira, Feb 2012+, MTX (20mg) Aug 2017+, folic acid
past use: 6mp for Sep 2010-Apr 2011 (not effective enough), then Remicade April 2011-Dec 2011 (built antibodies); additional 6MP Aug 2012-Sep 2013; Periactin for appetite Sep 2010-Sep 2013
other: Centrum chewable multi; calcium-vitD;
Derma-Smoothe for psoriasis rashes; Alrex, Zaditor eye drops for vernal conjunctivitis; history of asthma, ear infections
04-24-2012, 03:37 PM   #2
Tesscorm
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Hi Jenn,

I'm not sure about your question re the ability to absorb more than a 'maximum' amount regardless of how much you give him... I'll be curious to know that too! But, your comment about scarring vs. inflammation makes sense to me.

I've actually just started to look into this because Stephen wants to add more protein to his diet... I'm sure you're already doing everything you can in his diet but can you 'hide' protein in normal foods? I'm going to try to find a sandwich spread which contains protein (something like a soybean spread instead of mayo or butter)?? and I found a Greek yogurt that has more three times the protein of our regular yogurt - 14 mg (is mg the measurement??) vs. 4 mg (but didn't have the probiotics). I also recently found that Nesquik chocolate syrup now has a new version with vitamins added (B12, etc. but, offhand, not sure if protein is included). But, if he can't absorb more, this may not help.

And, certainly know that tiring 'waiting game', ugghh!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-24-2012, 05:14 PM   #3
DustyKat
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I don't know that there is a maximum that can be absorbed. I think the body absorbs all the protein it can from food and once processed and utilised any excess is then excreted. Don't quote me on that though!

Low protein is not all that uncommon in chronic Crohn's and if no inflammation is present then I think you are right in assuming that scar tissue is inhibiting its potential to be fully absorbed.

Thinking about you guys and sending loads of hugs and well wishes!

Dusty. xxx
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04-24-2012, 07:03 PM   #4
Mom2oneboy
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That stinks Jenn! Sorry the lab results have given you more to worry about. Before S went on EN I was trying to give him more protein too and found it difficult. He did like the Butterball turkey burger and it has 11 grams of protein. Not sure how well your son does with meat.

I have absorbtion concerns here as well. 3 weeks of EN and we are only up a pound. Thank goodness we haven't lost any...I am grateful for that!

Just keep trying to find ways to incorporate it in to his diet and hopefully the numbers will turn around!
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Shelley
11yr old son
dx Crohn's 2/2012
Currently on VSL #3
Started EN 4/2
Methotrexate 6/6/12
Remicade 09/30/12

Life is not about waiting for the storms to pass...It's about learning to dance in the rain.
04-25-2012, 04:30 PM   #5
Jenn
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Thanks! Neither the GI nor the nutritionist could answer me on amounts absorbed, maybe they didn't understand what I was asking. It could be, he can absorb 30% of all he gets, so if you up the total, you also up the total absorbed, but it seems there must be some sort of rate limit? anyhoo... lots of talk about EN here has got me thinking that route, but I know he wouldn't be very compliant about it. Won't hesitate if the doc calls for it tho. He's a good meat eater, ok with eggs, but not other high protein like fish or beans. He can do peanuts. I need to try Nutella, he might like it. There's no protein supplement as easy as say, B-12. The protein bars pack a punch, not sure how much he actually needs. So, here's hoping and waiting....
04-25-2012, 05:06 PM   #6
Twiggy930
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Hey Jenn,

I don't know if he can tolerate tofu but I used to hide tofu in all sorts of things. The two things the kids had NO IDEA it was in were smoothies with frozen fruit and mac and cheese. For the smoothies I used the sweetened desert tofu and for the mac and cheese I used the plain soft tofu. This however was all pre-Crohn's so I'm not sure how well it would be tolerated now.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
04-26-2012, 07:02 AM   #7
Lilmamma
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There is a product called Soy Nut Butter. It's exactly like peanut butter, but is peanut free. It contains 7g of protein for each 2 tbsp.
I find it in my local Target.
04-26-2012, 01:21 PM   #8
Jenn
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Great idea about the tofu and the soy nut butter. I may try both. He's hard to sneak stuff past, he doesn't like mac n cheese or smoothies - sigh!
04-26-2012, 01:41 PM   #9
Mom2oneboy
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Is it just me or does it seem like a lot of our little crohnies are picky eaters?? Mine is SO picky!
04-26-2012, 02:23 PM   #10
Tesscorm
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We actually talked about this a while back... Stephen's very picky too. We chatted a bit on whether they have always instinctively avoided foods that bothered them???

Stephen has never 'liked' fruits or veggies. While at the hospital, awaiting his colonoscopy, he was put on a low residue/low fibre diet - they were pretty much all his favourite foods!

My daughter, no crohns and eats EVERYTHING (really, some things you would never want to try! ), never liked melons or corn. Found out she has a slight allergy/sensitivity to them and allergist suggested that she avoided them as a child because she was responding to how her body felt when she ate them....

Last edited by Tesscorm; 04-26-2012 at 07:54 PM.
04-26-2012, 05:24 PM   #11
Jenn
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Alex goes on jags, he likes a variety of meat, veggies, fruit, grain, but not what you'd expect - loves broccoli, hates pasta, gags on mashed potatoes, doesn't like ketchup. He's a huge sugar fiend, so if sugar really is a problem for Crohn's, he has NO instinct to avoid it. He loves all the brightly colored fake stuff that even turns my sweet toothed stomach! Seems mostly a textural thing, but also an openness thing, stubborn as all anything to try something new.
04-26-2012, 08:05 PM   #12
Tesscorm
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Nope, no 'jags' for Stephen - consistently picky since he was old enough to say 'no-no-no'! 17 years of begging, bribing, arguing, worrying!
04-26-2012, 09:21 PM   #13
Mom2oneboy
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No jags for S either. When he was a baby he would just spit stuff back out. They say sometimes you have to try something several times before they will take it. Well, not him...he'd refuse it every single time. He likes fruits but no veggies. He's added a few things to the menu over the years but not many at all. If he had his choice he would live on bacon and cheese.
04-26-2012, 09:31 PM   #14
Tesscorm
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OMG, if I let him, Stephen would put bacon and cheese on EVERYTHING! He literally could live on eggs, bacon and cheese (and white bread) forever and be happy. He has added to his diet as he's grown but still eats his food 'plain' - very little sauce, condiments, dips, etc. His idea of pasta with tomato sauce is a bowl of pasta with a spoon of strained (because of seeds and doesn't like chunks of tomato!) sauce for 'colour' and cheese, of course!
04-26-2012, 09:44 PM   #15
Mom2oneboy
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Too funny!! S loves bread!!! And he doesn't use one condiment!! I thought all kids liked ketchup....uh uh, not my kid. He wouldn't dream of using a tomato sauce. Butter is the only thing allowed on his noodles. Our kids sound a lot alike!!
04-27-2012, 10:29 AM   #16
Twiggy930
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This is funny. My son is SUPER picky! Has been since about 1.5 years old. He hates most veggies and anything remotely spicy (he includes garlic and onions in with "spicy") and loves all bread products, most dairy products and meat. I used to think he was a super taster because when he was 4 we took him to Thailand and he had favorite brands of bottled water and he could tell them apart without seeing the bottles!!! My daughter on the other hand will eat anything and LOVES spicy food.
04-27-2012, 10:44 AM   #17
Tesscorm
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OMG, Stephen also has 'water' preferences! Doesn't like Nestle PurFiltre or Dasana... WTH... if my life depended on it, I couldn't tell the difference! It's WATER!!

Twiggy, Shelley - you might find this funny, Stephen has not lost his appetite for 'broth' His snack last night... non-veg French Onion Soup - beef broth, white bread and melted cheese (no onions!)
04-27-2012, 06:22 PM   #18
Jenn
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hahahaha! Alex has a water brand preference as well and also doesn't like Dasani. It all tastes the same to me (?!?). He always wants it icy cold too, he has his own little water pitcher in the fridge because the fridge filtered water isn't cold enough. Absolutely NO carbonation either, no soda, no juices, or soups/broth. sigh. but he loves spicy foods. He only eats the meat and sauce when we have spaghetti or O's. His hamburgers are completely plain, no cheese, no condiments. but he does like cheese otherwise.

Picky eating must be on the same gene...
04-27-2012, 06:36 PM   #19
Mom2oneboy
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S won't eat any type of soup either!

Jenn, you mentioned Alex had to switch from Remicade to Humira. How's he doing on that? Is he in remission now?
04-27-2012, 07:32 PM   #20
Twiggy930
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LOL my son wouldn't eat any type of soup until he started EN now he says that broth (beef or chicken) is "divine"...
04-27-2012, 08:31 PM   #21
crohnsinct
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Hi,
So, now what? Well, the GI was willing to believe it's a low-point on the average and wait and see next month's blood labs. Meantime, I get to freak out all month about trying to increase his protein intake. argh. where's that stabby....
that feels better!
UGH! Just posted the same thought drop the bomb and watch us obsess..Seems like you got some good news to. I did also...they must learn that in school.

So sorry you are left wondering. I don't really have a lot of advice. I do know cottage cheese is super high in protein but can't imagine any kid likes that.

As for low res diet...LMAO when I told one of my friends what was on the low res diet she said tell Olivia not to tell my kids or they will be faking Crohns.
04-27-2012, 09:55 PM   #22
Tesscorm
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I couldn't believe the menu choices they gave Stephen while in the hospital awaiting his colonoscopy - mac and cheese, french fries, grilled cheese, all white bread!!! As picky as he is, he still had never eaten such an unhealthy diet at home! And then after being diagnosed on Friday, it was decided he would start the EN Saturday afternoon - GI told him to eat WHATEVER he wanted until then! McDonalds for dinner, McDonalds Smoothie before bed and McDonalds-like breakfast! Ugghh!!! I kept reconfirming with the GI that this was truly okay!
04-28-2012, 02:41 AM   #23
OnMyOwn
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Is it just me or does it seem like a lot of our little crohnies are picky eaters?? Mine is SO picky!
I am both a Crohnie (diagnosed 1 year ago) and a picky eater (since birth). Apparently as a baby I would only eat orange baby foods - go figure.
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~OnMyOwn

Tackling this disease on my own and just hoping to get back to a 'normal' life again!

My Story: http://www.crohnsforum.com/showthread.php?t=32905

History:
- 3/2012: Scheduled for ileostomy reversal and completion of resection
- 10/2011: Small bowel resection, 30 cm inc. terminal ileum, temporary ileostomy
- 2/2011: Diagnosed w/ Crohn's in terminal ileum
- 6/2010: First symptoms @ age 32

Drugs (present): none
Drugs (past): prednisone, flagyl, prilosec, imuran, humira
04-29-2012, 04:35 PM   #24
Jenn
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Mom2oneboy - the Humira is going well, he responded immediately to the loading doses - though those were a little traumatic. I'm getting used to the shots, as is he. He's still gaining weight and feels good. The doc has yet to use the word remission on him though.

Crohnsinct - hmmmm, cottage cheese. I liked it as a kid, don't now and my husband won't touch the stuff, but you never know. Things I expect him not to like, he does and vice versa.

OnMyOwn - that's too funny, only orange baby foods? I can't even think of any baby ones except carrots. maybe the squash? My son was a super chubby baby, ate just about all the baby foods, then his independence kicked in! My family still teases me about only eating grilled cheese sandwiches, I was so picky.
05-23-2012, 07:39 PM   #25
Jenn
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Well, rats. Redid bloodwork on Mon and just heard from the nurse. Giving it a month to settle out did no good. His protein and albumin is even lower and now calcium has dropped too. GI wants to do endoscopy/colonoscopy and maybe start prednisone. I'd like to repeat the upper GI, need to talk to her some more, next appointment not for a month. sigh...
05-23-2012, 08:50 PM   #26
Tesscorm
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Sorry Jenn So disappointing and worrying when you get news like this!

Were you able to add any new proteins to his diet at all?
05-23-2012, 10:22 PM   #27
crohnsinct
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Boogers! So sorry. When are the scopes scheduled? SEnding lots of good vibes your way.
05-24-2012, 02:33 AM   #28
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Oh no, what a shame. Still at least you will get a better picture after the scopes. Couldn't find the stabby face so will send hugs instead
05-24-2012, 01:47 PM   #29
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Poor little guy. So sorry to hear that. I'll send a lot of healing thought his way.
Farmwife
05-24-2012, 03:26 PM   #30
Jenn
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Thanks! The nurse bumped me up to an appt with the GI on Wed so get to ask all the questions then. Not encouraging to have the doc confused too?! The scopes won't get scheduled for a couple weeks out at least, I'd like to wait til school is out anyway. I really didn't change his diet at all, so he should've at least maintained. My gut is telling me this is prelim signs that Humira is losing effectiveness. But maybe it's just that he's stressed fighting off the pinkeye.
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