I want my life back...............

[Lucy]

Hi Karen,

I was a caregiver for my parents and uncle for years, up until just a little over a year ago, so I know how tough
a job that can be. I was so sick before I got help here from many of the old timers with diet that I didn't think I'd be
able to continue doing all the physical or mental care that I, thankfully, was able to complete, thanks to them. I had lots
more than diarrhea, as if that wasn't bad enough.

In spite of having four other allergens, the first one I removed, ALL traces of gluten sources, made a remarkable improvement, not
only in the no. of stools I was having each day, but also, in the way I felt, and my ability to use my body without pain and stiffness or have
migraines which had become daily by then. The other allergens were more nuisance things than anything, but some people have almost as
bad symptoms from those as well as gluten. I just eliminated the foods one at a time after removing ALL the gluten, double checking
with enterolab shortly thereafter, and then I would send in another stool specimen for the others, eliminating them as soon as the stool
was collected.

Since you've already been checked for celiac disease, and finances are tight, guess you could go ahead and try eliminating all the main sources
of gluten...baked goods, etc., and read labels carefully. If you cook at home for your parents, you probably cook anyway, sooo...

If you're eating soups, be sure to avoid Cambell's as they all have gluten, last I checked. Probably lots of others as well.
If you are lactose intolerant, you may have diarrhea from that, whether or not you are also allergic to the protein. What happened
in my case was that the volume of diarrhea (D) went way down, and since I didn't eat all that much dairy every day, I discovered that, besides the inistial lactose reaction within an hour or two, I just reacted the next day after I'd had some dairy..like cheese or cream in coffee when I'd eat at a restaurant, etc. That's what made me suspicious of dairy. At first, I'd thought my gut was just taking it's time to finish the healing that had started.

The one thing that lingered for months after removing all gluten was the fatigue. That was much more gradual but eventually, it was all gone.
I think I was much more capable of working after just that one food was removed, but without any of those things, I kept approaching a normal stool until they stayed normal. Actually, I'd use the slightly more liquid or soft stools to tell me when I'd made a mistake or gotten contamination from something I'd eaten. Anyway, if you chose to go that route, I hope you get a great benefit as quickly as I did. This was like a miracle to me because
I'd been suffering so much for so long, and then to have it leave so quickly was amazing to me.

By the way, besides the diarrhea, do you have other symptoms are feel bad in other ways...like your body might feel like you have the flu, only it never stops???

Glad you had the colonoscopy. That was all I used my GI for. The rest I did for myself by finding out what foods
I was reacting to. Theses are delayed responses, so what you respond to after you eat is not the food responsible
for the current reaction...that makes it confusing because we tend to think it's something we just finished eating.
Actually, normal guts tend to have BM's after a meal, so I kind of think that's what happens to us, only the stool any meal stimulates happens to be
diarrhea, due to our food sensitivities...just my theory about that last part.

You can check out my allergens and that of the others who record them over to the left by our pictures.

I hope you have complete relief soon. You need to be well to take care of all you have to do, and you will need frequent respite from caregiving
to keep from losing your mind, so need to be able to get out without having to worry about having an episode of diarrhea. Many of us have been there and done, so we understand.

My mother and her brother, bedridden, both had Parkinson's...Mother's was a complicated form of it, and the last 4 1/2 yrs, she was paralyzed from it. My father had a stroke, and 13 months later, he died suddenly...either a heart attack or a massive stroke. He died before either of my PD patients.

Would you still be able to get out and work, should your condition get better, or do you think you'll soon not be able to leave them that long?

By the way, I'm also from Texas. In what part of East Texas are you living now? That will matter when it comes to finding things you can eat, should you decide eliminating gluten, for starters. It's gotten so much easier now than when I started out, and people in restaurants are getting more savvy, particularly the better restaurants.

Nice to have you here. I'm just getting back to the site, but not that often, but will try to follow your progress from now on, and offer any help I can.

Best Wishes, Luce

[Karen1129]

The GI did mention Endocort to me, but knowing I have no insurance and on a very limited income, he didn't prescribe it, and put me on prednisone instead.

I see mentioned on the board that you can get generic Endocort from India at a much reduced rate.
I was always a little afraid of ordering drugs from overseas, but it seems like folks on here have done
that and had no difficulities?

I also read where most folks have had the same experience i have had with doctors. They do not have a clue
about this disease. It's like, oh, just take imodium 4 times a day. God, that is so depressing and frustrating.
I remember on my last follow-up with my GI, when I told him I was going 20 times a day, soiling the bed at night.... he was like... well, you can try another specialists. I don't think they will tell you anything more then
I have about treatment.

I went down to my car, cried and thought dang, my life is over I guess. Leave it to me to come down with
something nobody has a clue about.

I am so glad i found this place. You need support and someone to listen, that truly understands, or
cares. Family and friends aren't that interested in hearing about your D issues. :)

i just cannot understand why more doctors are not aware of this horrible disease, or more research hasn't
been done.

[humbird753]

Hi - I was diagnosed with LC in June of 2009. The GI "specialist" I saw also had no clue and never told me a diet change (excluding gluten, and possibly dairy and soy) would make any difference. It took another 1-1/2 years before I found this forum. I also had explosive D, and was going between 25 and 30 times a day. I look back and realize the other symptoms I had were the extreme fatigue and brain fog. I have been gluten-free/dairy-free and soy-free since early December (however, I have had to tweak my diet at times because I was finding some of the foods I was eating did contain gluten after all). It has been a frustrating journey, but I can honestly say although my life is not what it was before this started, I can now actually go out in public more and am not having the constant accidents I was having. AND, I believe in time I will improve even more and eventually "get my life back." I am actually able to go for walks again (something I have not been able to do in about 3 years).

All of us here do understand what you're going through. Each of us has our own food intolerances, but starting with eliminating gluten/dairy/soy from your diet will make a huge change in how you are feeling.

I wish I had never had to search for this forum - BUT I am so thankful that I have found it. I am no longer alone with this. You will find a lot of answers here for your road to recovery.

Ask a lot of questions and do a lot of reading. You will soon find out you're in the right place for all of the right answers.

Hugs,
Paula

[tex]

I see mentioned on the board that you can get generic Endocort from India at a much reduced rate.
I was always a little afraid of ordering drugs from overseas, but it seems like folks on here have done that and had no difficulities?

Most members who do not have insurance (and a few who have insurance with a high co-pay for Entocort EC) buy a budesonide generic procuct (budesonide is the active ingredient in Entocort EC) known as Budez CR from an overseas pharmacy at the following link:

https://www.alldaychemist.com/1447-budez-cr-3mg.html

Since prescriptions are only valid in the country for which a physician is licensed to operate, no prescription is necessary for ordering from the pharmacy at that link. That pharmacy sells the drug in lots of 10 capsules. U. S. Customs regulations allow citizens to import up to a 3-month supply of any drug in a single order. For budesonide that would be 270 capsules (a normal full dose is 3 capsules of 3mg each). 270 capsules of Budez CR costs $121.50 plus the shipping cost. And yes, they are reliable. I'm not aware of a single case where any member of this board has ever been disappointed after ordering from that online pharmacy.

You can buy the exact same product from Canadian pharmacies, but of course they mark up the price by roughly 40 to 50%. For some strange reason, Canadian pharmacies require a prescription from a U. S. doctor before they will ship a prescription drug to a customer in the U. S. (even though those prescriptions are worthless in Canada). In the U. S., that many capsules of either Entocort or one of the generics approved by the FDA for domestic sales, would cost at least 10 or 20 times as much at the going domestic rate. We are being royally ripped off by the pharmaceutical companies here in the U. S., and they do it with the governments approval.

just cannot understand why more doctors are not aware of this horrible disease, or more research hasn't been done.

When the disease was originally described, it was considered to be a rare disease, so the medical schools never bothered to incorporate any significant training about the disease into their curriculum. Since the only way it can be diagnosed is by examining under a microscope, biopsies taken from the colon during a colonoscopy or sigmoidoscopy exam, that omission in physician's training became a self-fulfilling prophecy. IOW, you can't find MC unless you specifically look for it, and doctors never looked for it because it was a rare disease and doctors never expect to see any rare diseases in their own practice.

During the past few years, they are finally waking up and beginning to actually look for the disease, and researchers have found that it is actually rather common -- it's much more common than Crohn's disease or celiac disease, for example. Probably some day, they will figure out how to treat it, but that may be years away, since the wheels of progress tend to turn somewhat slowly in the medical profession.

Tex

[tnelson]

That's a really interesting analysis, Tex. I believe it's true. I was searching last night for information about how much Imodium is safe (i.e., used in the real world and not printed on the package), and whether one develops a tolerance--if anyone is also interested in the answers to these questions, I'm happy to post what I found. Maybe we already have the info under the medication section.

I landed on the IBS bulletin boards, and wow, I am certain that at least 1/2 of the "IBS-D" people are suffering from MC! The symptoms they were describing were *exactly* the same as MC. Explosive D, so bad they can't leave the house without fear, etc. Knowing how desperately they tried to get me to accept an IBS diagnosis, which I was stubborn enough not to do, I'm certain that many people with IBS actually have MC. I think you are right that doctors expect it to be rare, so it is rare, because as long as it remains widely undiagnosed, it necessarily remains very rare--hidden under our noses.

--T

[tex]

I'll bet you're correct about so many of those people almost surely having MC. As we've said before, the answer to the question, "What's the difference between IBS and MC?" is "Biopsies".

Tex

[Karen1129]

Hi Karen,

I was a caregiver for my parents and uncle for years, up until just a little over a year ago, so I know how tough
a job that can be. I was so sick before I got help here from many of the old timers with diet that I didn't think I'd be
able to continue doing all the physical or mental care that I, thankfully, was able to complete, thanks to them. I had lots
more than diarrhea, as if that wasn't bad enough.

In spite of having four other allergens, the first one I removed, ALL traces of gluten sources, made a remarkable improvement, not
only in the no. of stools I was having each day, but also, in the way I felt, and my ability to use my body without pain and stiffness or have
migraines which had become daily by then. The other allergens were more nuisance things than anything, but some people have almost as
bad symptoms from those as well as gluten. I just eliminated the foods one at a time after removing ALL the gluten, double checking
with enterolab shortly thereafter, and then I would send in another stool specimen for the others, eliminating them as soon as the stool
was collected.

Since you've already been checked for celiac disease, and finances are tight, guess you could go ahead and try eliminating all the main sources
of gluten...baked goods, etc., and read labels carefully. If you cook at home for your parents, you probably cook anyway, sooo...

If you're eating soups, be sure to avoid Cambell's as they all have gluten, last I checked. Probably lots of others as well.
If you are lactose intolerant, you may have diarrhea from that, whether or not you are also allergic to the protein. What happened
in my case was that the volume of diarrhea (D) went way down, and since I didn't eat all that much dairy every day, I discovered that, besides the inistial lactose reaction within an hour or two, I just reacted the next day after I'd had some dairy..like cheese or cream in coffee when I'd eat at a restaurant, etc. That's what made me suspicious of dairy. At first, I'd thought my gut was just taking it's time to finish the healing that had started.

The one thing that lingered for months after removing all gluten was the fatigue. That was much more gradual but eventually, it was all gone.
I think I was much more capable of working after just that one food was removed, but without any of those things, I kept approaching a normal stool until they stayed normal. Actually, I'd use the slightly more liquid or soft stools to tell me when I'd made a mistake or gotten contamination from something I'd eaten. Anyway, if you chose to go that route, I hope you get a great benefit as quickly as I did. This was like a miracle to me because
I'd been suffering so much for so long, and then to have it leave so quickly was amazing to me.

By the way, besides the diarrhea, do you have other symptoms are feel bad in other ways...like your body might feel like you have the flu, only it never stops???

Glad you had the colonoscopy. That was all I used my GI for. The rest I did for myself by finding out what foods
I was reacting to. Theses are delayed responses, so what you respond to after you eat is not the food responsible
for the current reaction...that makes it confusing because we tend to think it's something we just finished eating.
Actually, normal guts tend to have BM's after a meal, so I kind of think that's what happens to us, only the stool any meal stimulates happens to be
diarrhea, due to our food sensitivities...just my theory about that last part.

You can check out my allergens and that of the others who record them over to the left by our pictures.

I hope you have complete relief soon. You need to be well to take care of all you have to do, and you will need frequent respite from caregiving
to keep from losing your mind, so need to be able to get out without having to worry about having an episode of diarrhea. Many of us have been there and done, so we understand.

My mother and her brother, bedridden, both had Parkinson's...Mother's was a complicated form of it, and the last 4 1/2 yrs, she was paralyzed from it. My father had a stroke, and 13 months later, he died suddenly...either a heart attack or a massive stroke. He died before either of my PD patients.

Would you still be able to get out and work, should your condition get better, or do you think you'll soon not be able to leave them that long?

By the way, I'm also from Texas. In what part of East Texas are you living now? That will matter when it comes to finding things you can eat, should you decide eliminating gluten, for starters. It's gotten so much easier now than when I started out, and people in restaurants are getting more savvy, particularly the better restaurants.

Nice to have you here. I'm just getting back to the site, but not that often, but will try to follow your progress from now on, and offer any help I can.

Best Wishes, Luce

Hi Lucy,

Oh, I have such fatigue from all this that i can hardly make it through the days at times, but i plug along. my joints ache most days, and i have noticed , after years of being migraine free, that those have come back.

Thanks for the tips on Campbells soup. I use their Cream of Mushroom soup a lot with my cooking. Looks like I'll have to give that up !

There is so much to learn about gluten free products, and I live in the Conroe area, which doesn't have good resouces for gluten free products. I imagine I'll have to start going to the Woodlands area for my food shopping.

Got a lot of homework to do.

My skin hair and nails are sooo dry. I try to stay hydrated with water and Gatroade. I wonder if
Gatorade is bad for me. Hmmmm..... so much to learn .

[Karen1129]

Oh, and Tex, don't even get me started about the pharmaceutical companies and our government !
My mother used to say, if you want to get Karen cussing good, just mention insurance , or pharmaceutical
companies and their powerful lobbying interests.

[brandy]

Hi Karen,

Welcome! Gatorade can be problematic for a lot of us due to the sugariness and the extreme number of ingredients. I saw you live in Texas and I'm in Florida so I know heat is a problem. There are some hydration drink alternatives on this forum I think in the section when you log in and the pages load. Early on I got dizziness from gatorade so could tell I was reacting and early on I drank a lot of water. If you have a lot of D check out the recipes for hydration drink alternatives on this forum. Brandy

[Karen1129]

Hi Karen,

Welcome! Gatorade can be problematic for a lot of us due to the sugariness and the extreme number of ingredients. I saw you live in Texas and I'm in Florida so I know heat is a problem. There are some hydration drink alternatives on this forum I think in the section when you log in and the pages load. Early on I got dizziness from gatorade so could tell I was reacting and early on I drank a lot of water. If you have a lot of D check out the recipes for hydration drink alternatives on this forum. Brandy

Thank Brandy. I will check those out. i'm at a loss as what to do to hydrate myself.

I do drink LOTS of water everyday, but feel like I need something else.

[tnelson]

It you can handle it, coconut water has lots of minerals in it, especially potassium.

http://en.wikipedia.org/wiki/Coconut_water

I like the "taste Nirvana" brand. I love the taste and don't react to it, but I find it's important to monitor myself with all new foods for unusual reactions.

--T

[tex]

Karen,

Most of us find tea to be a good drink, especially if we drink it unsweetened. It's best to avoid most of the flavored teas, though, because many of them contain gluten and other ingredients that cause problems for us. Simpler is always better when making food and drink choices with this disease.

Safe soups and broth can be found in health food stores, as can many other allergen-free foods. Most of us make our own soups and stock in volume (on weekends) and freeze it in whatever size containers best suit our needs, so that it can be quickly thawed in a microwave oven.

Here's a link to a recipe for a safe electrolyte drink. That post was written by Polly, who is a doctor who has MC, and she controls it by diet alone.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=992

Tex

[Gabes-Apg]

Karen
firstly 'Gday' - welcome to the group

dealing with the myriad of symptoms and issues that MC brings is not easy, it is a huge challenge. Our tag line is 'you can get your life back' I wont lie, it may not be exactly the same as what it was before, but you can get your energy, focus, freedom back!

my description of mc is management is that there is no right way or wrong way, there is your way.....
the reason for this is that (as you may have already noticed from other posts) we are all different, what works for one, may not work for another.
the frustrating part is that there is no quick fix or guarenteed solution (or a magic potion)

based on the majority of people I can tell you
- a gluten free diet does bring majority of people good success quickly
- eliminating meds that are triggers (Nsaids, ssri's etc) also reduce symptoms quickly
- eliminating other trigger ingredients (high fibre, maybe dairy or soy)

- owning it! this is it, MC is fact of life, you cant ignore it or wish it away, if you embrace it with the right attitude you will minimise eliminate symptoms and create a wonderful fulfilling life.

I was Dx age 40, I work full time. Albeit I did chose to change jobs to a job that didnt involve travel to make life easier, and have made changes to my lifestyle but i have travelled with MC (3 weeks in France for work)

this forum is a great bunch of sincere caring people, many have been living with MC for more than 7 years. Take their knowledge and learnings and you can attain wellness very quickly

take care

[Karen1129]

It you can handle it, coconut water has lots of minerals in it, especially potassium.

http://en.wikipedia.org/wiki/Coconut_water

I like the "taste Nirvana" brand. I love the taste and don't react to it, but I find it's important to monitor myself with all new foods for unusual reactions.

--T

I'll have to try that.

I bought some Almond Milk today. It's actually good.

[Karen1129]

Guys, you have no idea how much I appreciates all your posts and inputs.

I was convinced I would never get control of my body back, and my life was changed forever.....
not in a good way.

I'm glad I found this place and I know I'm not alone in this. I mean, who the hell ever heard of MC?
Obvisously, some GI's haven't.

I know it won't be a quick fix, it's going to take time and effort on my part, but I'm determined and will
have lots of questions, I'm sure.

First thing I need to find is a good Health Food Store.

My goal is to be on a plane to NYC this time next year ! *fingers crossed*
I went twice a year for many years to visit friends, and haven't been able to do
that since early 2010. I miss NYC !!!

But, most importantly, I've found people I can "talk" to who have been down this road.
Who don't cringe at the subject.

Karen