I was diagnosed with LC today...

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Post by Jumpindogs »

jlbattin wrote:I'm just curious as to only why 6 mg........I am still on it (I only take 3 mg about every 4 or 5 days now), but when I started, I took 9 mg (3 of them) every morning first thing. It took no time at all until my D was gone.

9 mg is the usual dose and then you go down from there. Just curious as to why only 6?
Oh, I dunno. Because my GI doc apparently doesn't know how to treat my LC?! And because I don't know any better? :D

Sorry for the BA...I am on a frustrating trend right now and I apologize. But this is just one more thing that my doc is apparently not doing according to standard protocol. You prolly haven't read my post from Friday. My GI doc and his PA are not the most helpful. I am switching docs but can't get in until July 14th.

Thank you so much, Jari, for asking and commenting. :-) I really appreciate it. Gives me more ammo to discuss with my PA. Which I really don't wanna do. But here goes...
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Post by Jumpindogs »

jlbattin wrote:I eat that particular brand of bacon jerky all the time.........it's very good and I don't have any trouble with it.

I don't eat their beef jerky though because it has beef stock in it and that can have soy.

I use jerky (beef and bacon) particularly when I'm traveling to have some safe quick protein!
The Oberto Applewood bacon jerky I linked? I would kill right about now for a portable protein snack! But the "natural flavorings" concern me...what could be in there?
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Post by jlbattin »

I don't usually worry about the natural flavorings...........and I've been eating it for awhile and have had no trouble............we are all different though so you'd just have to try it.

They sell that brand at Walmart (at least that's where I got mine)
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Dairy free, and Soy free since July 3rd, 2015
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Post by Jumpindogs »

jlbattin wrote:I don't usually worry about the natural flavorings...........and I've been eating it for awhile and have had no trouble............we are all different though so you'd just have to try it.

They sell that brand at Walmart (at least that's where I got mine)
I found this "The Food Allergen Labeling and Consumer Protection Act (FALCPA) is helpful to some extent. FALCPA requires food manufacturers to list if one or more of the 8 major food allergens are in a natural flavor. This includes: milk, egg, peanuts, tree nuts, wheat, soy, fish and crustacean shellfish. If natural flavor contains one of the 8 major allergens, you will see the name of the major allergen within the list of ingredients. For example, the label may say “natural flavoring (soy)” or it may say “Contains: soy” at the end of the ingredients list."

And this "According to FDA food label regulations, natural flavor or flavoring may be from:

Spice
Fruit or fruit juice
Vegetable or vegetable juice
Edible yeast
Herb
Bark
Bud
Root
Leaf or similar plant material
Meat
Seafood
Poultry
Eggs
Dairy products"

Both quotes from http://www.kidswithfoodallergies.org/pa ... rgens.aspx

So dairy, soy and eggs have to be labeled but spice and yeast sound like possible problem sources. Maybe even more problem sources depending on individual sensitivities. However, that's just my newbie brain trying to figure it out. I can try the bacon jerky but since I am still symptomatic I won't know if it's OK for me or not.

I am trying to find a portable, room temp protein snack for the initial phase of the elimination diet and having no success.

Glad these work for you and thanks for sharing. :-) Dreaming of bacon jerky...
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Post by T »

For jerky I have my own dehydrator which gives me the option of the marinade ingredients and choice
of meat just put excess in freezer.

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Post by tex »

Joanne wrote:Because I need something to store in my purse for consumption at a moment's notice based on my job eccentricities. :D
That's one of the reason's why they make ziploc-type bags.
Joanne wrote:BTW, how long does it usually take for Entocort to start having an effect? The Uceris improved my BMs right away although I did have to add Loperamide to resolve some residual urgency. I've been on Entocort four days and no progress. :-(
As Jari pointed out, you're taking less than the labeled dose. Retreatment almost always requires the full labeled dose in order to get reasonably good control within a reasonable amount of time. Your GI doc should know that, but obviously doesn't. If budesonide isn't providing at least partial control within about 2 weeks it's probably not going to help you much.
Joanne wrote:And another question...a question I should be asking my GI doc or his PA but since that's a challenge...is the reason health insurance in the US doesn't cover Uceris because it is only approved for use in patients with Ulcerative Colitis? At my initial appointment my doc said the reason he gave me the samples is because Uceris is very expensive and isn't covered by insurance. But he didn't write me a scrip to even try. Maybe he wanted me to start on it right away...and that was good...but then he could've given me the samples and a scrip. I see the company that makes Uceris has a savings program that ends up costing patients only $25 per scrip for any scrip costing $600 or less. Why would he put me on Entocort now if I could go back on Uceris? And why use so little Uceris initially (one 9 mg every other day for 24 days) if they have a savings program? If the Entocort is not working because relapse can be somewhat resistant to re-medication and I could've been on Uceris properly in the first place I am gonna be even more irritated with my doc. Grrrrr! I am hoping the reason is because Uceris is not approved for us in this country so a scrip would not have done any good and he just didn't explain that fully. I don't want another reason to feel so disappointed in him...I need him until my July 15th appointment with my new GI doc. :-)
This is an unintended consequence of "The Affordable Care Act". In order to provide insurance for everyone, everyone who previously had good insurance had to give up part of their benefits, and medications have taken the biggest hit — insurance now covers far fewer of the more expensive drugs so that many patients can no longer afford their medications. Patients who need aspirin or BP pills have got it made, but those who need expensive corticosteroids or ultra-expensive cancer drugs are increasingly out of luck as more and more drugs are kicked farther up the copay ladder by the insurance companies.

Note that there are no drugs labeled for MC. Therefore all drugs prescribed to treat MC are prescribed for an off-label use. This provides another loophole for insurance companies to rob patients blind.

Your doctor apparently doesn't understand that reduced dosages of corticosteroids are for maintenance treatments after a patient is in remission. Therapeutic treatments to attain remission require the full dose.

Regarding labeling on items such as "natural flavoring" — in a perfect world everyone would list every ingredient accurately. Unfortunately in today's world where supplies are typically bought from the lowest bidder, manufacturers often have to take the supplier's word that the ingredients are as represented, and label their products accordingly. Manufacturer's do the best they can under the circumstances, but most of today suppliers are no longer local, or even national — they are located anywhere in the world, and they are increasingly located in China and other distant locations where the people actually growing or gathering those ingredients almost surely don't understand food sensitivities and probably wouldn't be concerned even if they did, because they need the money from the sack of products that they brought to town so that they can feed their family. America and it's people and their problems are half a world away.

This is especially true for spices and herbal seasonings, and if you read some of the reports where labs actually analyze some of the shipments, it's enough to make your hair stand up. Many samples are lucky to be 75 % pure, and you don't want to know what the impurities are. :lol: IMO any processed food with more than 5 simple ingredients is a crap shoot. If we take a chance on them we win some and we lose some, depending on how our luck is running on any particular day. This is why we continue to recommend a simple, bland diet during recovery. Our digestive system can handle such things much better after it has healed, but while we are still reacting, we are very vulnerable.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Jumpindogs »

tex wrote:
Joanne wrote:Because I need something to store in my purse for consumption at a moment's notice based on my job eccentricities. :D
That's one of the reason's why they make ziploc-type bags.
LOL! Tell me a bland protein acceptable for my healing phase that I can carry in my purse at all times at room temp and I will put that thing in a zip lock bag, Tex. :D
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Post by tex »

If you go back to some of the posts made here 8 or 10 years ago you'll see that we had a few members who were really sold on the paleo diet. One of them was famous for her motto: Always carry a porkchop in your purse. :lol:

Most cooked food will not spoil immediately as long as it's not contaminated with bacteria. If you can't tolerate a porkchop, try a lamb chop. No one here reacts to lamb. No one here reacts to duck, goose, pheasant, rabbit, quail, venison, or any other wild game meat. I ate bacon while I was recovering, because I am not sensitive to pork. If you can tolerate pork, then bacon would work in a plastic bag.

If you don't trust unrefrigerated food then carry an insulated bag designed for keeping food hot or cold.

Here's a link to a thread from about 5 years ago where Polly mentioned that porkchop motto. But this is also a very interesting thread for other reasons, and it may give you some ideas. I have no idea what all your food sensitivities might be, so you will have to use your ingenuity to select portable sources of protein.

http://www.perskyfarms.com/phpBB2/viewt ... o+porkchop

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by brandy »

http://www.walmart.com/ip/Coleman-9-Can ... r/23427949

I have a quilted cooler that looks like a purse (not this one but like it.) I live in FL. It is hot now. I regularly carry around protein in a tupperware with a small cooler brick if I"m in a hot environment.

For the men....there are some manly portable cloth coolers available.
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Post by Jumpindogs »

tex wrote:If you go back to some of the posts made here 8 or 10 years ago you'll see that we had a few members who were really sold on the paleo diet. One of them was famous for her motto: Always carry a porkchop in your purse. :lol:

Most cooked food will not spoil immediately as long as it's not contaminated with bacteria. If you can't tolerate a porkchop, try a lamb chop. No one here reacts to lamb. No one here reacts to duck, goose, pheasant, rabbit, quail, venison, or any other wild game meat. I ate bacon while I was recovering, because I am not sensitive to pork. If you can tolerate pork, then bacon would work in a plastic bag.

If you don't trust unrefrigerated food then carry an insulated bag designed for keeping food hot or cold.

Here's a link to a thread from about 5 years ago where Polly mentioned that porkchop motto. But this is also a very interesting thread for other reasons, and it may give you some ideas. I have no idea what all your food sensitivities might be, so you will have to use your ingenuity to select portable sources of protein.

http://www.perskyfarms.com/phpBB2/viewt ... o+porkchop

Tex
I don't trust unrefrigerated meat beyond a couple hours. Food, yes. Meat, no. I work in a hospital and my hubby is a clinical microbiologist. No wiggle room there. :-)

I am doing so much cooking and planning to have meals available for any day I work (allowing for the work days when I have no time to cook) and might have to stay or get called in that I am overwhelmed. I used to count on the snack bar in my purse and work locker to carry me whenever the unexpected left me hungry with no food. Can't do that now.

I am starting to realize that there is no room temp protein snack solution for me right now. I get the cooler bag idea...I use a large cooler bag already to carry two meals to work. But that requires planning and my concern is when my job makes it too hard to plan. It's prolly hard to understand if you don't get called in to handle traumas and gotta be there stat with no time to change your clothes or potty the dogs. :-)

I have no idea what my food sensitivities will be either. :D At that point I assume I'll be able to figure out a portable protein snack. I am desperate for one now.

And on the subject of bacon...I looked at two large health food stores today on the way home from work and the bacon all contained celery powder. I found this bacon at my local grocery store: bacon cured with water, salt, sugar, sodium phosphates, sodium erythorbate, sodium nitrite. Is that acceptable?

Thanks for the link, Tex. I'll check that out.
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Post by Gabes-Apg »

Joanne,
It's tough right now, trying to adjust our pre MC life in with the changes that the MC lifestyle plan kinda force us into.....
Given everything that has been discussed I have some suggestions...

A. We can't do everything perfectly,
B. We can't always do everything the exact same as life before MC
C. It might be worth considering taking time off work and spend some time figuring out your safe eating plan. Once you have the safe eating options confirmed, it might help with figuring out what will work for workplace/work routine and demanding days at work...

It's tough when change is kinda forced onto us, and even more so in MC world, when the outcome of less than ideal foods or situations can be WD.
I was working full time, in busy demanding role that involved travel when I was first Dx'd. I do understand the impact of adjusting to life with MC.
In the scheme of eating refrigerated cold meats ?bacteria risk versus an ingredient that triggers the MC inflammation... You have to think about the options choose which is the worst option for you.
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Post by jlbattin »

Joanne,

This is the bacon I started with: http://www.makethenaturalchoice.com/Pro ... oice-Bacon

It has no preservatives and all natural ingredients.....uncured........fixed it in the microwave perfectly............found it at my King Sooper's........

Now we buy ours in bulk at Costco.........
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
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Post by tex »

Joanne,

I can certainly understand your concern about unrefrigerated meat, but I grew up on an old fashioned farm in the 1940s and 50s, and back in those days if you lived way out in the country, most meat (mostly pork) was stored in the smokehouse. A little fresh meat was stored in an ice box. I don't recall exactly when we finally got our first refrigerator, but it was sometime in the mid to late 1940s because we didn't have electricity until then. I can't recall anyone in the family ever getting sick because of spoiled meat.

The bacon that Jari suggested looks like a good choice.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by brandy »

Hi Joanne,

I'm with Tex, I remember going off to school with meat and other foods in my lunch box in the 1960's. Ice jell bricks were not invented then for lunch boxes. All of the kids had unrefrigerated meats in their lunch boxes at school. We seemed to have survived it.

But, if you are concerned freeze some protein in individual ziplocks and if you are called to work pull your frozen protein out of fridge and put it in your bag. It will be thawed out by snack time. If you freeze the protein you probably won't need a freezer brick.
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Post by Jumpindogs »

Gabes-Apg wrote:Joanne,
It's tough right now, trying to adjust our pre MC life in with the changes that the MC lifestyle plan kinda force us into.....
Given everything that has been discussed I have some suggestions...

A. We can't do everything perfectly,
B. We can't always do everything the exact same as life before MC
C. It might be worth considering taking time off work and spend some time figuring out your safe eating plan. Once you have the safe eating options confirmed, it might help with figuring out what will work for workplace/work routine and demanding days at work...

It's tough when change is kinda forced onto us, and even more so in MC world, when the outcome of less than ideal foods or situations can be WD.
I was working full time, in busy demanding role that involved travel when I was first Dx'd. I do understand the impact of adjusting to life with MC.
In the scheme of eating refrigerated cold meats ?bacteria risk versus an ingredient that triggers the MC inflammation... You have to think about the options choose which is the worst option for you.
Thanks, as always Gabes, for your kind and thoughtful response. :-)

A. You're right in sensing that I always want to do everything right. It's a fault I've been trying to let go of for years and I have been mildly successful...you should see our house now. Hahaha! But in all seriousness, I want to do this diet right because I want to heal my colon as soon as it can be healed so that I can start testing foods since I can't do the Enterolab testing. Not sure I can talk myself outta that one, if that's what you mean.

B. That's a given and I know my life from here forward is changed. That's OK. Sad and still grieving some over the loss but I can deal with that cause my Jesus carries me. My faith is strong.

C. No can do although that's a good suggestion. I just came off three months FMLA leave from work to have my thumb joint replaced...which has healed perfectly. :-) Plus if my current GI doc won't give me leave language beyond allowing two tardies per year for my LC and refuses to write a request for me to keep my current parking assignment he sure as poop ain't gonna write me a total leave from work for any length of time. Perhaps my new doc would...who knows? But even if he did, I exhausted all my sick time on my thumb leave so that would be a hardship financially...my leave insurance covers 60% of my salary and sick time makes up the rest. I cannot take time off from work without an FMLA authorized leave because 1) we can't afford that right now and 2) my job is fairly specialized and I want to keep it.

I am so sorry, Gabes. I did not mean to imply that anyone here did not or does not feel the impact on daily life of dealing with MC! Traveling would be an enormous obstacle and one I certainly cannot appreciate fully since my job does not require that. I only meant that it would be hard to appreciate getting a phone call and having to immediately grab the car keys and go out the door. Please forgive?
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