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Food advice

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Sat Nov 14, 2020 9:29 pm
Jubilee wrote:

Bob

I think 29g of sugar is quite a lot for a drink considering that in a day one has carbohydrates during the day  that add greatly to the level, cereals bread pasta etc 

trying to sip water through the day as was suggested + approx 4 cups of decaffinated tea , I just wish there were drinks that could be consumed that wouldn’t be full of sugar .

Metatone seem to get good writeups following illness but would it add to output that I’m trying to resolve , surely 5ml tsp x3 daily shouldn’t affect output , mostly b’s I think and iron . I do need to get a buzz I’m onky 5 weeks post op so what with trying to find what one can and can’t eat I’m getting really fed up .

 

Hi Jubes,

Yeah, I hear ya. I guess I don't consider the 29 grams of sugar that much because it's in a liter (32 ozs), which is like 4 servings of a cup apiece. So that would be like 7 grams per serving......if you only drank a cup (8 ozs). Hang in there.........things do get better with time. We've all been where you are and understand your feelings......although that doesn't help you with yours. Slowly things will start to gel and as you get the hang of what you can and can't eat.......it gets easier and you can spend some time thinking about other things. We're here for ya!

 

regards,

bob



Sat Nov 14, 2020 10:46 pm
GraphX12 wrote:

 

Hey Bob, this is the first I’ve ever heard of ORS. Surgery salt water reminds me of the many colonoscopy preps I’ve done in a past life and I gag just thinking about it. Can you share with us how you mix your cocktail for an “improved” version?

(great info as always)
Many thanks!
Doug


Hi Doug!

 Sure can.  When I got my shitbag back in Sep 2014 I was assigned to a home infusion company of the hospital's choice for my TPN.  Heck, I didn't even know what a home infusion company was. I immediately started looking around for Gastros that had experience with Short Bowel folks and found none.  Except a good Doc friend of mine told me to try Georgetown Hospital in DC.  So I hooked up with a good Gastro there, but she wanted me to be seen (and cared for) by the hospital's Small Bowel Transplant Group, not for a transplant....but because they dealt with Short Gutters.  The first thing they did after our initial consult was to switch my infusion company to one called ThriveRX.  They were formed by a bunch of nurses and Dieticians who actually gave a crap and focused on weaning patients off TPN, rather than just supplying it to them until they croaked.  That's where I got introduced to ORS.  And the first time I tasted it I nearly puked.....it literally tasted like a cup of sea water that someone dumped a sugar packet into.  YUKKK!  But it was the only thing I drank that didn't immediately end up in my bag.  So I figured there was something to the ORS stuff.....but I needed to work on it a bit before I could drink it.  So I tried everything.......soda syrups.....diet iced tea, unsweetened Hawiian Punch.....Country Time lemonade.....all the natural and unnatural sugar substitutes.....you name it......I tried it.  But they all were too sweet and with the added salt just tasted plain weird. But ThriveRX also assigned a really smart Dietician to my case and we became good friends.  She understood that I wasn't just along for the ride, I was going to be in control of my health in every aspect.  So she suggested I start with a very diluted form of ORS to let my tastebuds get used to it.....and I thought that was a good idea.  It wasn't very helpful from a hydration point of view, but we were playing the long game here.......and I had a plan.  Understanding that the body has a remarkable ability to adapt, if you give it a chance and sometimes a helping hand, I was betting I could make my bowels adapt to an ORS that I could stand to drink. On the way I determined that the World Health Organization's recipe for ORS was just plain wrong. When you dig into the subject of ORS you'll find they speak in terms of osmolarity, which is just a fancy way to say how concentrated the solution is, and I figured the WHO version had too high an osmolarity.  So after doing all my experimenting I determined that a reduced osmolarity ORS worked just as well as the regular ORS, and tasted boatloads better!  My Dietican friend was a bit skeptical, until she found out the WHO was also working on a reduced osmo ORS as well........and was about to introduce it to the world. Then she became a believer.  So when you look up ORS you'll find two versions.  The original osmolarity version and the newer reduced osmo version.  Go with the reduced osmo!!  

Ok, for the recipes.........the first one I found was also the simpliest.  But you have to like lemonade.  Ok, you don't, but I haven't tried too many other flavors with this one because I like the lemonade version.  Just go get a quart of REGULAR Gatorade......the Lemonade flavor for me.......or any other flavor that you like.  The Lemonade is NOT the Lemon-Lime original green version.  It's sometimes hard to find, but is just a shade green paler than the Lemon-Lime, so you have to read the label. What you do is get another empty quart container......another Gatorade bottle works perfectly, as you can just pour one into the other until they line up with each other in their bottles and you've got half in each.  Then add a 1/2 teaspoon of salt to it and fill it the rest of the way with water.  The colder the better.  Shake it up and you've got the fastest to make ORS on the planet.  At first you might not really like the diluted taste, but your tastebuds will adapt and before long regular Gatorade will taste like pure sugar water.  With all the Gatorade flavors to choose from you have lots of options.  Just remember to use the orignal sugared version, not the G3 or whatever the artificially sweetened version is.  Of course you COULD use the artifically sweetened versions to dilute the quart if you find it diluted too much by just topping off with water......so you have options.

My second recipe is soda based.......because I love cola.  And you'll find that carbonation masks the taste a bit more.  You can use any regular non-diet soda to start.  I'm cheap so I buy the Coke clone at my local Weis Markets for something like 65 cents for 2 liters.  But use whatever brand you like......Dr Pepper, Coke, Pepsi, whatever........as long as it also comes in a DIET version. The reason for this is that you need the diet version to dilute it....stay with me here.  So first read the label of the non-diet soda you choose.  It'll tell you how many grams of sugar are in one serving, which is typically 8 ozs, but check to be sure. You want to find out how much to use to get you only 25 to 30 grams in your quart (liter) container.  So for example I think the Weis Cola has 43 grams per 8 oz serving.  Just make a ratio of it by saying 8 ozs divided by 43 grams equals (the ozs I need) divided by 28 grams (or something close to make the math easy). So for my Weis Cola I say 8/43 = X/28 and solve for X.  So for me I need a little over 5 ozs of Weis Cola in my quart container.  Measure that out and dump it into your quart container......that's your sugar.  Now add that 1/2 teaspoon of salt to get your sodium.  And now you get to fiddle with making it taste the way you like.  Fill the quart container about 3/4 full with plain seltzer or club soda.  Seltzer is cheaper.  Mark it on the bottle with a Sharpie marker and then fill the rest of the way with the DIET version of what you started with.  This is your baseline to start modifying from.  If you skip the seltzer and just fill it with the diet version it will be too sweet.  If you skip the diet version and just fill it with seltzer.......it will be too diluted.  Or at least that's how it is with me.  But you now have a starting point  and you can play with different amounts of diet and seltzer until you get what you like.  And trust me........your tastebuds WILL adapt in short order.......and you'll actually like it to the point of not wanting regular or diet soda anymore.  What's really neat is when you go out to most food places they now have the zillion flavor soda machines.......so you simply pick the regular and fill a 32 oz cup about 3/4 of an inch from the bottom.....dump a salt packet into it........and then fill with seltzer, diet version and ice!  And you can make your favorite ORS almost anywhere in seconds.  Plus the look people get on their face when they see you dump a salt packet into your soda is PRICELESS!

Once I got my hydration under control I continued to push the envelope with my ORS.  I can now make it with an even lower osmolarity and it still works.  So the sky is the limit with this stuff.....you just have to experiment.  You can make an ORS with just about anything as long as you keep the salt to sugar ratio close.  You can use fruit juices, even milk.  Oh........if you do choose something to start with that also has lots of salt in it......you can just subtract off that amount of salt from your 1/2 teaspoon.  But if that complicates it too much then don't worry about it.....it'll sill work.  If you Google ORS recipes you'll get more than you want.  Just remember there are two osmolarity ratios, and I've found less is more.  Let me know how you make out......and if I didn't explain anything sufficiently well just shout!  Bottoms up!!

regards,

bob

 

 

 

 

Sun Nov 15, 2020 4:31 am

Hello Bob. 

Thank you so much for the explanation of your experimentation with ORS.

I don't have these problems so have no use for the solutions. However, I do appreciate when someone perseveres with experimentation, knowing that the outcomes may be uncertain. It seems to me that this individual effort is the most productive way that 'we' find solutions to those problems which are not necessarily taken on by manufacturers because there is unlikely to be any profit in it for them. Keep up the good work!

Best wishes

Bill

Sun Nov 15, 2020 6:31 pm

Thanks for the info Bob! I will be looking into it.

Doug

Nurse
Tue Nov 17, 2020 10:43 am

Yet another question re snacks , are Rice cakes recommended or taboo ?


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Career/nurse for Spouse
Tue Nov 17, 2020 11:48 am

Hi Jubes,

  Puffed rice seems easy to digest, compared to rice in its natural form.  But I'm speaking from my experience, so let's see what the others have to say.  

 

regards,

bob

Nurse
Sat Nov 21, 2020 10:51 am

Perhaps most members didn’t try rice cakes as no more feedback .

what about a bacon sarnie would that be tolerable for a Ileostomies diet ?  


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Career/nurse for Spouse
Sat Nov 21, 2020 12:53 pm

Chew, chew, chew. Rice cakes are like eating air. I do not eat them. Bacon good.

Nurse
Sun Nov 22, 2020 9:03 am

I'm sorry to keep asking  about diet that should be suitable for ileostomies but as a newbie I'd rather learn from those that can share what they found suitable and didn't cause more output or continuous loose output 

I found that white sauce in my fish pie  seems to  cause gas or would it be the leeks I added to the sauce ?

How have members coped with smoked fish is that a safe choice ?

I have booklets with various suggestions for meals but it's not varied enough to give me answers to most of the foods I'm asking about , would there be a dedicated site with advice for those of us that are struggling to find a balance to suit and to gain weight ?  TIA 


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Career/nurse for Spouse
Sun Nov 22, 2020 3:34 pm
Jubilee wrote:

I'm sorry to keep asking  about diet that should be suitable for ileostomies but as a newbie I'd rather learn from those that can share what they found suitable and didn't cause more output or continuous loose output 

I found that white sauce in my fish pie  seems to  cause gas or would it be the leeks I added to the sauce ?

How have members coped with smoked fish is that a safe choice ?

I have booklets with various suggestions for meals but it's not varied enough to give me answers to most of the foods I'm asking about , would there be a dedicated site with advice for those of us that are struggling to find a balance to suit and to gain weight ?  TIA 


Hi, Jubilee~

I don't do the rice cakes - I think the airy, spongy texture wouldn't allow for much digestion.  (Sort of like Rice Crispies cereal - I avoid that, too.)  I stick with high-grain crackers, multi-grain breads.

As for bacon, LOVE IT!  Like Xnine wrote:  Chew, chew, chew!  Like mine crisp.

Yes, the leeks could be creating gas.  Do an online search about "gassy" foods - what caused gas prior to the ileostomy may continue to cause gas.  I really enjoy beans, but without my colon, I have found that there's less gas for me, now.  (No longer a place for the beans to ferment.)

I have no issues with smoked salmon.  The smoky scent does make its way to my pouch, though.  (From smoked ham, too - but no big deal.)  Smoked salmon, red onion rings, capers & tomato on top of a cream cheese-slathered Everything bagel...?  Heaven!  (Chew, chew, chew - sip, sip, sip!)

I don't know about a dedicated website for suitable food suggestions, but I like that you're still reaching out to us on MAO, Jubiliee.  : )

Lily17~

Nurse
Mon Nov 23, 2020 6:54 am

Thank you Lily17

So safe enough to try smoked fish with poached egg ..my concern is gas and output leading to leaks . Interesting that the gas causing foods prior to ileostomy are the same foods that cause gas now despite passing the large bowel .

Im finding it hard to understand how one can gain weight when food seems to pass so quickly.

thanks again 


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Career/nurse for Spouse
Mon Nov 23, 2020 8:47 am

I had a further commen on bacon 🥓 but did not post. Must have forgot to hit reply. Any way I have a colostomy so things are different for me than someone with an iliostomy. I think medium bacon might be a problem chewing it down where crispy bacon breaks up easier. Try one piece to see how it goes but not ten.

Nurse
Wed Nov 25, 2020 5:17 pm

Yes I read a colostomy is indeed very different and that nutrients aren’t lost like they are with high output Ileostomies .

its really difficult getting the balance right . 

Food that will not cause high output or gas is one bug bear, I’d like to start making milk puddings but being diabetic I have to find a sugar that doesn’t raise sugar levels , anyone have advice on what one s should use that wouldn’t affect sugar levels or affect output , I know some artificial sugars cause loose output. Is there a suitable safe sugar substitute ? TIA 


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Career/nurse for Spouse
Wed Nov 25, 2020 7:57 pm
Jubilee wrote:

Yes I read a colostomy is indeed very different and that nutrients aren’t lost like they are with high output Ileostomies .

its really difficult getting the balance right . 

Food that will not cause high output or gas is one bug bear, I’d like to start making milk puddings but being diabetic I have to find a sugar that doesn’t raise sugar levels , anyone have advice on what one s should use that wouldn’t affect sugar levels or affect output , I know some artificial sugars cause loose output. Is there a suitable safe sugar substitute ? TIA 


Hi Jubes,

  There ARE safe sugar substitutes.........as long as your not a rat and consume incredibly large quantities of them.  But there are also those that should be avoided.  But the reasons to avoid are different for everyone, so your best bet is to make a list, then cross off those that specifically won't work for you. This is a big convoluted subject.......so just Google "best artificial sweetener for diabetics" and start there.  You'll probably end up with Stevia, or one of it's incarnations.........but you might find something that better fits your situation.  My Dietician told me as a rule of thumb....avoid sugar alcohols, as they don't play well with intestines. 

regards,

bob

Nurse
Sun Nov 29, 2020 10:00 am

You were right Bob it seems Stevia is the preferred choice for diabetics but unfortunately it seems not to be for Ileostomies and can cause very loose output ...have members found this to be true ? I’ve been informed that any artificial/substitute  sweeteners do cause loose output . 


_________________
Career/nurse for Spouse
Sun Nov 29, 2020 2:20 pm
Jubilee wrote:

You were right Bob it seems Stevia is the preferred choice for diabetics but unfortunately it seems not to be for Ileostomies and can cause very loose output ...have members found this to be true ? I’ve been informed that any artificial/substitute  sweeteners do cause loose output . 


Good Morning, Jubiliee~

As an ileostomate never having had diabetes, or consumed Stevia, I can't respond to its use.  But, for me, artificial sweeteners (sucralose, aspartame, xylitol, saccharin) caused diarrhea prior to my colon being removed, and looser output, now.  I try to avoid artificial sweeteners completely, and even list it as one of my "allergies" in my medical charts as some OTCs and prescriptive medications contain artificial sweeteners.  Lately, I have found that some OTC chewable auto-immune boosting supplements do have artificial sweeteners.  And that's unfortunate.

There appears to be much debate and concern over the consumption of Stevia, and its affect on health.

I did a brief Websearch on Stevia, and there were many hits/results.  I read one article from a company that seemed to contain a lot of valuable information on both natural & artificial sweeteners, but - in the end - was promoting sales of its own product:

https://lyfefuel.com/blogs/lyfefuel/top-10-best-sugar-substitues

The Mayo Clinic put out a short article on the topic:

https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/artificial-sweeteners/art-20046936

And, so did the Cleveland Clinic:

https://health.clevelandclinic.org/5-best-and-worst-sweeteners-your-dietitians-picks/

Happy Reading!  : )

Lily17~

 

Nurse
Mon Nov 30, 2020 8:38 am

Lily 17~

thank you so much for the links and your research, lots of reading indeed 

Being diabetic makes the diet very restrictive, the last thing one wants is loose output , I think milk puddings would help one gain weight but of course sugar is needed , if one could use a natural like honey it would be bliss but I can’t .

Lots of stewed apples ( I use eating apples so I don’t have to add any sweetener ) or banana with yogurt gets a but boring so looking for  alternative desserts. Bored with this restrictive diet 

many thanks 

Jubilee 

 


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Career/nurse for Spouse
Wed Dec 02, 2020 5:09 am
Jubilee wrote:

Lily 17~

thank you so much for the links and your research, lots of reading indeed 

Being diabetic makes the diet very restrictive, the last thing one wants is loose output , I think milk puddings would help one gain weight but of course sugar is needed , if one could use a natural like honey it would be bliss but I can’t .

Lots of stewed apples ( I use eating apples so I don’t have to add any sweetener ) or banana with yogurt gets a but boring so looking for  alternative desserts. Bored with this restrictive diet 

many thanks 

Jubilee 

 

Yeah, lots of discussion out there about sugars. This might also be a good read;

https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.medicalnewstoday.com/articles/323469&ved=2ahUKEwjw4fX5ha_tAhUAGFkFHdcTA_kQFjADegQIAhAE&usg=AOvVaw14zgM1lUlSmlpW1VhE0OQK

Regards,

Bob

 

Nurse
Wed Dec 02, 2020 7:14 am

Thanks so much for that link Bob very informative . It’s a minefield and really difficult to decide which would suit Ileostomy and  and it’s moods / tolerances .

regards 

Jubilee 

 


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