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Going straight liquid

I've been discussing this option with another forum member for a few weeks now. My last blood workup a few weeks ago showed I pretty deficient in almost everything or borderline low on everything. Since I stopped the Humira in February I'm back to feeling terrible. Not as bad as I was pre-humira or even a year ago but still not like I should be. I'm attributing most of my problems now to lack of vitamins and nutrition.

So I've decided to go on a boost only diet supplementing with a multi-vitamin, B12 tabs (my B12 is the only thing that is ok but it did drop 150 points from Jan to March .. I stopped taking tabs during that time to see what would happen). As well as B6 and Folic Acid as my red count is low and MCV is high which I've read is an issue with B6 and FA. I've only started today so I can't say I've noticed anything. I'm going to be on 2,000 cals a day which is 8 bottles of the normal stuff. I am also going to try, which will be very very very hard for me to limit myself to 1 soda a day. I normally drink like 6 or more. Also with the recent price increase in ciggies, I've decided it's too expensive to smoke anymore. I have a couple packs left from a carton and once those are gone I'm going to try and go cold turkey.

It's a bunch of changes at once and I am sure I'll fail in one facet if not more but I'm at a loss of what to do anymore as the doctors sure aren't helping me much. I'm going 4 days with Boost only and then slow re-introduce solids to see what happens. I did get some pudding (american not brit) to add something with a little consistency to my diet but I'm going to try to limit myself to 1 packet a day so that I can stay as liquid as possible.

If 4 days goes well I may extend beyond that but I'll cross that bridge when I come to it. My biggest issue right now is exhaustion and vomiting so if I can resolve at least one of those issues I'll consider this little experiment a success.
 
The only thing I would add is if you can get 500 more calories a day it would be beneficial to heal you quicker since your body will be able to burn more energy on the disease and not ust to staying alive. Good luck
 

My Butt Hurts

Squeals-a-lot!
That's a lot of stuff to quit all at once, but since smoking and caffeine and aspartame are all probably messing with your intestines, chances are you could feel quite a bit better if you stick with it.
If your red count is low does that mean you need some iron too?
Boost has vitamins in it too, don't know if you need to check the label to make sure you don't overdo it on anything.
The only other thing that I'm thinking is that sugar can aggravate inflammation, and there is a lot of sugar in Boost and pudding.

With 3 big changes - even if you only manage to do one of them - it's still a step in the right direction and we'll be proud of you!

So... if you are introducing solids a bit on day 4, then I can still mail the big-ass chocolate Easter bunny that I just bought tomorrow?? :tongue:
 
Jeff D. said:
The only thing I would add is if you can get 500 more calories a day it would be beneficial to heal you quicker since your body will be able to burn more energy on the disease and not ust to staying alive. Good luck
So are you suggesting 2500 a day Jeff? That's doable.

@MBH yeah you can mail it dork =p I know the sugar isn't a good thing but I don't know of any other liquid type diets which give you all that you need all in one shot. I'm going to admit I'm lazy and don't want to actually incorporate a bunch of different liquids to get me what I need.
 
Yeah I think about 2500 Calories would be better than 2000. It may cause you to gain weight but I think before you figure out how many Calories you get a day you should try and figure out how many calories you eat a day and then go from there.

Also, make sure you drink a few other things besides the Boost. Getting a little more water may be a good thing because it could balance the sugar from the Boost, although I don't know what is in Boost exactly.
 
I actually bought a couple bottles of pedialyte since they don't make "adultlyte" haha. Also I have some apple juice and I'm going to definitely drink some water with crystal lite added.

I don't particularly want to add too much weight but that has been a concern for me lately as I've dropped as low as 155 but now I'm back up to 162. If I were to get into a seriously bad flare again then I'd be looking at 130-140 if I lose weight like I have in the past. I'd like to maintain my current weight and get the right balance of nutrients.
 
i think it sounds like a pretty good idea, drew. like you said its a lot of changes at once, i know id have a really hard time with that. lol even trying to cut out one thing and i have horrible self discipline. but deinfitly at least trying is a great thing.
yeah the boost does have a lot of sugar and artificial stuff in it, but then again, so does soda and most of the foods that we eat anyways. so if you remove the sodas and some other bad foods and replace it with boost, maybe its not so much...dont know.hey that stuff is mad expensive though and at 8 cartons a day? maybe look for some coupons online? i feel like they used to print coupons on the boxes too.....maybe not though.
good luck with it. hope it makes you feel better in at least one aspect!
 
Not 8 cartons good grief Kello! 8 Bottles a day is roughly equal to 2,000 cals as they are 250 a pop for the normal stuff. It is mad expensive that's why 4 days only for now. I found it on sale at Walgreens buy 1 get 1 half off. So it was 24 bucks for 4 cartons of the stuff.

Here's the website for Jed

http://www.boost.com/

I *think* this is basically the "elemental diet" for the brits and aussies.

And I already broke this diet a little bit cause I had a pancake haha.
 
aw good luck with the regime Drew - i really hope it helps you.

if you find you're hungry on it, you could try some soups as well as the drinks.

i was just thinking, could you get B12 injections instead of tablets? might be an idea if you can, as it goes straight into your bloodstream and bypasses any malabsorption issues.
 
drew_wymore said:
Not 8 cartons good grief Kello! 8 Bottles a day is roughly equal to 2,000 cals as they are 250 a pop for the normal stuff.
ahah yeah by cartons i meant bottles. lol i am slightly losing my mind atm.
but no, i didnt think you meant 8 entire carton-pack things that the bottles come in. omg i think you would die of boost poisoning. too much of it makes me feel like im gonna explode.

lol a pancake already?! hahah ohh self discipline...
 
Yeah my parents had dinner and asked if I wanted anything and I said no but then I looked at the creeeeeammmy butter and syrup (which is a liquid!) and caved in. I'm trying to do this right though. Since I'm up at the vampire hour I normally go get some mcnuggets or something and I'm resisting the urge. Oh how I miss mcnuggets and chicken fries ...
 

soupdragon69

ele mental leprechaun
Hey Drew,

From what I have read (briefly) on the boost page you posted it is absolutely nothing like elemental...

http://www.shs-nutrition.com/shs-product/elemental_028_extra_liquid

This home page above will allow you to log in and look at the elemental that is used for Crohns patients here in the UK and you will see why its totally different to boost.

From what I have read about boost it can be used for weight loss and gain amongst other things.

Elemental is purely designed for Crohns patients and those with other conditions like malabsorption and short bowel syndrome to name a couple.

It is designed to be absorbed at the upper end of your small bowel so the rest of the bowel both small and large gets a rest and you get all the nutrition you need. Here Elemental is only available via prescription and under supervision/support.

There is research you will find on the website that shows it does decrease inflammaiton although they are not sure how.

Sorry if this seems a bit of a rant by me but it bugs the heck out of me when folk compare elemental to other things like boost, ensure etc and its totally in a league of its own.

Some recently on here have been on Modulen also and it works well for some Crohns patients but it does have Casein in it which does irritate some and elemental doesnt. They also work in different ways "burn/metabolising" wise.

My concerns for you individually are that you have no dietitian support and doing a liquid diet of any kind is extremely tough. Not just because you arent eating solid food but also because you dont get the same volume of fluid you do from solid food each day. As a result you have to increase your fluid volume to compensate for that loss from solid food. Another aspect is because you are down in fluid volume you also then suffer from headaches etc from dehydration and low blood pressure.

This is why you need the support of someone in that field as it means they also ensure your dietetic needs are met. Anyone with inflammation of any kind burns more energy and the average man needs 2500 kcal (correct me if I am wrong here Jeff and Benson!) to meet his daily needs. You are likely to need at least that as Jeff has already said just to maintain your current needs.

Something else to think about is going from food to no food/liquid diet to eating gradually again will mean you lose out nutritionally each time as it takes time to adapt Drew.

Am not saying dont do it - we all have days where we literally cant eat or cant face food.

Am just saying be careful!! Plan well!! Pace yourself!! Make sure you have a good safety net too!!

Ok?

Hope it all works out for you. PM me if you think I can help in any way. Will always listen.
 
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Here the official site of Boost:

http://www.boost.com/

It seems to be high in sugar. Don't know if this is good!!!

Main Ingredients: Water, sugar, corn syrup solids, milk protein concentrate, vegetable oil, (canola, high oleic sunflower, corn oils) and less than 0.5% of soy lecithin, carrageenan, salt, natural and artificial flavor, vitamin A palmitate, beta-carotene, ascorbic acid, sodium ascorbate, vitamin D3, vitamin E acetate, thiamine hydrochloride, riboflavin, niacinamide, vitamin B6 hydrochloride, folic acid, choline bitartrate, vitamin B12, biotin, calcium pantothenate, vitamin K1, calcium carbonate, ferrous sulfate, potassium iodide, magnesium phosphate, zinc sulfate, cupric sulfate, potassium citrate, potassium chloride, sodium selenite, chromic chloride, sodium molybdate, manganese sulfate. Contains milk protein and soy.
 
As Jan says a "liquid diet" isn't as universal as it is on the surface (ie: on paper)....If I'm not mistaken most products like Boost and Ensure will state on the package to consult a physician if you have plans to use it as the solitary dietary intake day in and out....I'd be cautious "living" off it for several reasons, and that caution is compounded with IBD in the equation, IMO....

As for metabolic requirements, 2500 is a sound average, though, because the musculature of males can vary much more than that of females, it can be as low as 1800 for maintenence or as high as 3000+ for maintenence, depending on Lean Body Mass makeup (how much muscle one has on their frame)....other expected factors like activity level and age etc... also matter....anyways...

It was interesting at the IBD Symposium I went to, they said that in almost all cases, stopping smoking will be better for IBD, it only seems to be worse off in those occasions that it is UC they said, but that's not a definitive. They said from healing, to nutrient absorption, to medication assimilation, stopping smoking almost always beats continuing, plus, like you said the cost hike is a pain :)

Drew it sounds like you're (understandably) fed up with the go-round, as I am there with you. I just think what you might be better off doing for starters is stopping the smoking, and easing into a refined diet of known "safe foods" first, and then graduate onwards to looking at Ensure/Boost supplementation (replacement may be a bit extreme, and I believe it's too much at once, because if your body retaliates, you don't know where blame can be placed or what to modulate, as far as the cigarrette ceasation or dietary changes).

One step at a time, maybe talk with your sister and see what she says if you haven't already (if I'm not mistake she's a nurse, no?) or a GI/Nutritionist you can trust who can guide you step to step....
 
Whoa! I didn't realize Boost contains carrageenan. Bad, very very bad!! I just recently read an article online that stated very clearly to avoid carrageenan...especially with IBD. I'll see if I can find the article, but this is from wikipedia:

Consumption of carrageenan may have a role in intestinal inflammation and possibly inflammatory bowel disease, since BCL10 resembles NOD2, mutations of which are associated with genetic proclivity to Crohn's Disease.
 
I can't find the article I was reading, but if you google "carrageenan" and crohn's or colitis, you'll get some interesting articles. The one I read last week talked about scientists giving carrageenan to animals to induce ulcerative colitis (I believe the article had to do with a clinical trial they were doing for a new drug). If I recall correctly, the carrageenan absorbed the liquid in the intestines, which caused the intestinal damage in the animals.

Anway, it's real bad and all of us need to stay away from it! That much I *do* remember...
 
Thank you to everyone for the support, advice and information. I managed 2 days on Boost only. I did go out this evening for some eggs and toast and it started causing pain and nausea straight away. It seems like liquid or mostly liquid is the only way that I don't have any pain. Eggs and toast really should hurt me I shouldn't think but hey who knows at this point. I'm just trying to as much as I can myself since the doctors don't have a clue nor are they really *moving their asses* (sorry for the language) so it's left up to me to try and find something that allows me to function at a higher level then I have been lately. I am going to go back to boost only for a day or two and try and calm my gut back down. I understand the risks involved and am trying to supplement the water/electrolytes as well knowing that I'll need to increase fluid intake. I'm sure smoking won't hurt in the least bit, at least if I'm a bleeder I'll know soon enough since I've read in several places and had one GI tell me smoking helps calm bleeding =)
 
I talked to my sister tonight, as Benson mentioned she is a nurse. She said that she agrees the sugar content in boost is not ideal but it's not the same refined processed sugar found in things like candy bars so it's not as bad but that I shouldn't stay on it long term for obvious reasons.

She mentioned getting a central line and doing feeding that way in order to give my bowels a rest. I'm not sure my GI will go for it but I'll ask, it can't hurt at this point. It really does seem no matter what I eat, that if I eat enough quantity that it causes problems. I'm not over eating but because it doesn't seem to flow properly for whatever reason that even if I were to eat a bunch of small meals that they cause the same problems as 3 regular meals. I've tried the small meal approach before and it hasn't helped in the long term, near term of course because I'm not eating too much I don't get immediate pain but at the end of the day after all the small meals then I start having issues just as if I had eaten normally.

And I'm admitting right here that I am in my current state not disciplined enough to get all of my changes done at once. I have added some solids which I said I wasn't going to do. I think TPN or something like it might be the best bet at this point to get my nutritional deficincies addressed as well as give my bowels a chance to rest and rehab as it were.
 
Sadly if there was a bacon/steak/beer/cheese liquid diet that provided all the essentials. I KNOW I could handle that without any issues.
 
Mmmmm..... count me in if you find it.

I've noticed a lot of people have problems with steak and cheese. I've never had any problems with any food.
Am I strange in that respect, is there any one else the same as me?
 

soupdragon69

ele mental leprechaun
Nope I manage steak fine. Dairy is a huge NO NO for me though in any format. DRAT!

Drew,

TPN? Hmmm... It has its pro's and con's. I start folk on TPN whilst they are in the ITU setting on a fairly regular basis. The biggest issue is big risk of sepsis/infection because you are "feeding" direct into the blood supply/circulation. You have to be VERY strict with what you are doing to lessen the chances of this. If Cassie was around (or Kello I think) am sure they could both fill you in on how they felt about it having experienced it.

Is there no way you could go for something along the lines of Modulin or Elemental 028 over there?? They are designed as I said before purely for gut/absorption issues.

Here they will only go for TPN if there is no other choice i.e. post op not eating/absorbing, sedated on life support, long term eating issues that cannot be addressed by NG tube.

Keep us posted on how you get on. Please please take care!!
 

My Butt Hurts

Squeals-a-lot!
And the thing about elemental is that it is predigested so your gut has to work WAY less to get that through your body than even Boost. Ya' know how if you drink milk and throw it up it comes out like cheese a bit? Even though the milk goes in as a liquid, it is still digested as somewhat of a solid. Your body is still working to digest it.
Here's a recent thread about how someone feels with his new found Modulen remission.
http://www.crohnsforum.com/showthread.php?t=5697
Of course it would be hard to do, but maybe worth it to feel better. You have felt crappy long enough.
Plus - you are still waiting for you pillcam results. Maybe they will have some new advice for you when you get those back. And were you talking about trying Remi?
 
I was on TPN for a couple days in the hospital when I was first diagnosed. It took them about 6 trys at my bedside and then I ended up in radiology to have the PICC line placed. After the PICC line was finally placed it wasn't that bad. I was back on food within a couple of days and the PICC line was removed before I came home.

It also runs 24 hours a day, not sure how that would work on an outpatient basis. I also had labs drawn (also from the PICC line) every morning so that the correct fomulation of TPN could be made for that days bag.

Good luck!
 
In short, TPN is nutrition fed directly into the system, sometimes a feeding tube is used instead, but think of it as "life support" for the GI, instead of the respiratory system and a ventilator.

 

soupdragon69

ele mental leprechaun
Nice one Benson!

Yep TPN stands for Total Parenteral Nutrition. Basically we are feeding you your nutritional needsn via a vein rather than you doing it yourself.

Enteral feeding is via a nasogastric tube for instance.

Benson used a very nice analogy there!
 
blah, my link didn't work though, maybe they caught me hotlinking the pic.....

But thanks Jan. The idea of food being supplied via the nostrils is a whole new level of weird, though...we all remember the kid with his milk carton across at the lunch table who liked to laugh ever so voraciously at the wrong moment....
 
hows it all going drew?

jan mentioned me for TPN....i have never been on tpn long term, just for about a week in the hospy. (was pretty nice to be honest, you dont have to worry worry worry about your nutrition, you know it is taken care of and you can jsut eat if you feel like it)
BUT, i did have a picc line in for about 8 months to get antibiotics for a freakin abcess in my colon that didnt respond to oral meds. so if you decide to go the tpn route, then i could answer any questions you have about the PICC in general.

i really hope youre doing better. i really could relate to what you said about your tum just doing better without food in it. thats pretty much how ive been, the thought of food is gross and when i do force it down it = pain and an angry tummy overall.
i was really thinking of going the TPN route but with tysab that was a no no cause as jan mentioned, you can become septic and tysab would increase that risk for me. and when i decided to abort tysab, well i was just too far gone to give something else a try so surg happened.

let us know whats going on! however it turns out, we all know how important nutrition is. 83 lbs for me on surgery day and that scares the hell out of me, i never want to see that kind of weight loss in anyone else here
 
One thing I try @ home is baby rice cereal mixed with apple juice. Also scrmbed
eggs and toast. chicken baked only with butter and baked potatoe. Hope you feel better soon
bethyd78
 
I'm going to try Ensure/mashed bananas/soup only for a little while. I need to let my poor body heal. Let us know how it's going for you!
 
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