I'm New....Hi to All

[lulu]

Greetings from NW Arkansas & a cold, snowy, icy day it is. Around 0 degr., streets all icy & snow covered, so homebound. Am new & glad to be here. Can't believe it took me so long to find you, quite by accident, by googling if Slippery Elm Bark was good for MC, which I've been diag. w/ since last Sept. 2010. As far as I know (altho I still think candida/fungus/parasites has something to do w/ lots of illness, from experience w/ both my husband and me), my D problems started about 6 yrs. ago AFTER I took a dose of Olive Leaf Extract spray for sinuses. It was a different brand than I'd used before w/ no problems. I soon after started projectile vomiting, along w/ severe diahhrea. The way it manifested was the weirdest thing. After the first attack, thinking I had a virus & thinking it was over, it started happening about every 4 or 5 days, w/ me having to take to the bed, as they say, not taking the extract again. This went on for about a month 1/2 or so, then got back to normal, as I remember. That was in Nov. & part of Dec. That next spring I had a sinus infection & not correllating it w/ the olive leaf extract, used it again. BOOM. Same thing. Talk about weak afterwards. Lasted for a similar time. Then seemed normal, but was bloating lots & lots of gas. Then sometime after that, at about the same time my husband started w/ severe D (a story of it's own, after GB/surgery, bile duct by pass surgery, stones in pancreas, pancreatitis..he passed away last Apr. from cancer in many places, after being misdiag. for 5 yrs.), I did too, again, only this time I'd finally figured out NOT to ever take Olive Leaf again. Don't know if it was the brand being different, but wasn't going to try it again to find out. The only other thing I did do was take a parasite cleanse & it about put me down, and did for two days. Dehydrated me & made me extremely weak w/ only one dose. After that & some before that I think, the D had started again, only no throwing up. It has continued & now is worse & has been worse for a year or more, up to sometimes 8 X daily, mostly watery, some mucousy, some piley, but nothing solid. My colon has to be damaged from the first two times, then the cleanse, altho don't know that, just guessing. I know nothing about it, I just try to find alternataive ways to help myself. I know I'm stressed, as losing my husband of so many yrs. has been devastating, plus the D too, dissolving a business....too much to absorb in 1 yr. My Gastro Dr. prescribed Asacol, but when I read the side effects & one of them was pancreatitis, I asked the pharmacist what the percentages were & she couldn't find out, so that was enough for me, going through it w/ my hubby while in hosp. after the GB surgery (which a Dr. in Dallas later said wasn't necessary). If I get pancreas problems, it won't be from meds, it will have to be from MC, which I just learned on here that it can happen? Scares me all over again after what we went through.

I know I'm making this too long, but I haven't gone back to the GI Dr. since my colonoscopy & his letter telling me that I have MC & him prescribing the Asacal. I did have a colonoscopy 2 yrs. before & had polyps taken off. My bro. died of colon cancer 5 1/2 yrs. ago, so finally went for one. I've had bad luck w/ Dr's. & medicines & wanted to research this more before returning to him, even though I think he's a good Dr. as far as I know. I have entertained the thought of going to see a Dr. Lasco in Huntsville, Al. & staying w/ a friend near there to see if he could help me. He co-wrote a book w/ Jordan Rubin, the Garden of Life Naturopath, and know that meds wouldn't be the only thing w/ him. I will now go see my Dr. again after reading all of these posts & some other links, but just wanted to be more informed before I do that. Not saying I won't take a medicine, but would rather not if I can find an alternative way to stop this, or by diet. My natural outlook on meds started when our now 39 yr old daughter was a baby & experiencing foul smelling diahhrea & at that time I had to put her on a gluten free diet (her 1st. cousin, same thing), then at 5 yrs. old she developed hypoglycemia, so had to learn to read labels, and got into researching supplements when Dr's. didn't help any, but alternative ways did. Boy, has the GF diet thing changed....soo many more products/knowledge as to what works & not works, according to your posts. Thank you so much for ALL of that info.

I bought a Vita Mix machine last wk. & now wondering if I've wasted my money after reading some of the diet posts, as nothing on there seems like anything I would fix in that machine, so far. If anyone has ideas on that, I'd love to know, please. I was thinking juice & green smoothies to help my health, as have been so busy & apathetic since my husband's death, that thought that may help me.

I use coconut oil for sauteeing, powdered goat's milk instead of milk (is that usually receive well, or considered dairy if trying the elimination diet? Was on rice milk w/ my husband, but decided to try this instead, to see. I take Omega 3's & Vit. D, but haven't been using the rest of my supplements lately for some unknown reason. Have been using pineapple in Vita Mix for inflammation, as Dr. report also said the collagenous (sp?) kind of MC, if that's a correct term, would have to get my letter from him to be sure, but that word was in it. Been taking powdered slippery elm bark in water this past wk. also, as have always had bronchitis & also read it's good for the gut. Was taking a very good brand, suuposedly, of liquid minerals w/ mag. in it, so kind of afraid to resume that again? I'm alll of a sudden craving coconut & beets & beet greens. Ok, am a little crazy right now. Always heard you crave what you need, but who knows? I also have never craved sugar or ate much of it, but have since he died, since end of Apr. Don't know what that's all about. I forgot; I did do a gentle parasite cleanse that took about a month about a yr. ago & passed very small, shrimp colored parasites. Kept them in a bag & showed them to Gastro Dr. Don't we get gross? He did a parasite test & said I don't have them. That stymied me after seeing them & showing them to him. I had figured we'd both had them & had something to do w/ our diahhrea, had thought of everything it could be, naturally, as we get desperate for an answer, as am sure you would all agree?

I've started on the GF diet, but got frustrated today when couldn't register correctly on here, and hadn't eaten & broke down & ate a Healthy Choice TV dinner I found in freezer & have had D ever since. Then ate salsa & GF chips...what a diet today!! Am addicted to restaurant salsa & chips...oh boy. I was surprised at one comment that said it sometimes takes a long time on the GF diet to get better, as it happened almost overnight w/ our daughter, but this is a different deal, the MC, so am trying to keep that in mind. Am confused about the Enterolab. Is this something I need help w/ my Dr. for or just go to a website of their's & do it myself? I need to be more caring now of my health & start trying to see if it's just GF, IF it's GF, if it's also dairy, etc. I also eat lost of eggs, so hope that's not it also, but I bet I eat 5 wkly, so wouldn't surprise me?! Ii sautee them in coconut oil or boil them or make an omelet, so that would be my luck.

Soo sorry I posted for so long, but rambling must be my only way to communicate tonight w/ my brain fog today. Thanks so much for any info you can throw my way and I'll get around to reading all the posts asap & learn more. Most of all, thank you for being here. You don't know how you have made my day!!! It gives me hope. Nowhere have I read the worst that can happen w/ this?

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[Celie]

Welcome Lulu!

MC is a tough issue, but you have come to the right place. I am new myself, so I won't try to answer your questions, but someone will. There are many great people on this board who can help you.

Celie

[lulu]

Thank you so much Celie.

[tex]

Hi Lulu,

Welcome to our internet family. You've had a rough time, over the past 6 years, so I hope that we can help you find your way back to good health.

I have no idea what might have been in that sinus spray that caused your symptoms, but it was probably something besides olive leaf. At any rate, there are so many ways that this disease can be triggered, that nothing would surprise me, any more. And stress can definitely make the symptoms worse.

Actually, the risk of developing pancreatitis from Asacol is very low, and it usually only happens after long-term use, and in those cases where it does develop, it usually resolves on it's own, if the Asacol is discontinued promptly. Other than that, it's a fairly safe drug. One of the problems with Asacol, though is that it contains lactose, and for those of us who are sensitive to dairy products, it can cause us to react. One of the newer alternatives to Asacol, such as Lialda, or Apriso, might be a better choice, if you are interested in trying a 5-ASA type medication to treat your MC.

Some of us have controlled our symptoms by diet alone, but, of course, that takes longer than combining the treatment with medications, and in order to make the diet work well, one must locate and eliminate every food sensitivity in the diet, of course. For that, testing at Enterolab can save some time and worry. You can order their test kits from their website, or call them on the phone to order. If your doctor orders the tests, it will be easier to get your insurance to pay for the tests, but some insurance companies will not pay for the stool tests no matter who orders them.

https://www.enterolab.com/

Concerning healing time for the gut - kids heal very quickly, including their intestines, and they can recover from celiac disease damage, for example, in a matter of months, whereas it can take us oldsters 4 or 5 years or more, and in some cases we never completely heal. Fortunately, though, we can heal enough to achieve remission from symptoms, usually within a year or less, if we are lucky, much sooner, of course, when the right medication is added to the treatment. This allows us to reach remission reasonably soon, and heal later.

For most of us, if we are sensitive to the protein in cow's milk, (casein), then we are also sensitive to the casein in goat's milk, sheep's milk, camel's milk, etc., because it's amino acid composition is very similar.

Nowhere have I read the worst that can happen w/ this?

According to the medical description of this disease, most GI specialists consider it to be a "nuisance" disease, with a benign course. On the other hand, those of us who have lived with the disease for years, have found it to be a debilitating disease, that tends to alter our lifestyle. So basically, the worst that can happen, is that it can cause us to be virtually chained to our bathroom. It is not, for example, connected with an increased risk of colon cancer. For those of us who are sensitive to gluten, however, we have a somewhat increased risk of non-Hodgkins lymphoma, similar to the risk that celiacs experience, but like celiacs, once we adopt the GF diet, and our gut begins to heal, the risk decreases to approximately the same level as the general population.

Again, welcome aboard, and please feel free to ask anything.

Tex (Wayne)

[lulu]

Thanks for your help in registering & also for your very informative reply. I was so tired & trying to get everything in, that didn't even think about typos, etc., but glad you were able to read it & answer so many of my questions.

Am looking forward also for any answers as to the Vita Mix Machine & if these raw foods help or hurt, that I would make into smoothies. I always thought they were so healthy, but am stymied still as to raw foods for MC. I love cabbage, most greens & fruit that is pureed also. Although I wasn't raised in the south, my parents were, and of course my love for cole slaw, pinto beans & cornbread goes w/o saying. Anyone know of a good GF/DF cornbread recipe. Also, are pintos bad, as too much fiber? Cabbage? Have tried to find all of this googling, but have gotten conflicting answers. I will luckily eat about anything, not picky, so will spend lots of time reading, I imagine, to get new recipes. I also pray I can tolerate cornmeal, since it's a corn product. I have already found out that just eating corn isn't the best thing for me. Makes me run to the potty more often, but haven't noticed the cornbread when adjust the recipe some. Of course, seems everything I eat doesn't digest, just some more than other's.

I look forward to reading so much more & with your great postings, think I'm on the right track. I fnally have a little time this month for that. It's been a journey & still selling things that I don't need, cleaning out, etc, for a sale, but have come a long way, so maybe I can pay more attention to my health.

[Zizzle]

Welcome Lulu!
You seem to have much experience with natural supplements, healthy diet, etc. One thing that is hard for an otherwise "healthy eater" to accept is the need to cut down on fiber as the gut heals. Many here cook their vegetables until they are mushy and would never think of eating salad and other greens. Salad in particular seems to irritate the colon. I overdo the fiber, eating broccoli, cooked greens, brown rice, fruit, salads at restaurants when there are no other options, etc. Probably too many seasonings too. This probably explains why I'm still having soft stools. I experienced almost overnight relief when I eliminated gluten and dairy - 80% improvement in bloating, urgency and frequency. I tried re-introducing goat's milk yogurt and developed almost immediate "battery acid D" and that was that. No more dairy of any kind. If you don't get results eliminating gluten alone, eliminate dairy (and soy) at the same time to see how you do. I also eat lots of eggs. Thankfully Enterolab testing showed I was not sensitive to eggs. I am yeast sensitive though, so I rarely eat GF breads and try to limit my sweets. I ordered Enterolab testing online on my own and paid for it through flex-spending dollars from work. There was no way my crumby GI would have ordered it.

You mention doing parasite cleanses. I have no idea what they consist of, but I believe anything that cleans you out (much like colonoscopy prep) has the ability to alter the balance of gut flora, perhaps allowing more pathogenic bacteria to proliferate over the friendly kind. Residents of Latin America and other tropical parts of the world rarely develop IBDs, and this is sometimes attirbuted to parasites...they can be helpful by keeping your immune system busy or by some other mechanism.

Many here believe mycobacteria may play a role in the pathogenesis of MC and other autoimmune diseases. These are "stealth" bacteria without cell walls that can't be eradicated with antibiotics, and can't be diagnosed with standard medical tests.
In my case, the beginnings of MC started 10 years ago as post-infectious IBS (after a terrible bout of traveler's diarrhea). Many here can also recall a similar origin.

As far as meds, I was also prescribed Asacol by my GI but I declined. I use Pepto tabs for flares.

You've come to the right place to continue your journey to the ever-elusive remission. Welcome aboard.

Zizzle

[MaggieRedwings]

Welcome Lulu,

Well you have had a very long and hard road and dealing with your husband's passing has only added to your burden.

Weighing in on the raw fruits and veggies as well as the Vitamix Machine - Would return the machine unless you have a use for it other than raw fruits and veggies. IMHO at this point in time your gut really will not be able to tolerate the raw foods and I would suggest well cooked ones. After 10+ years with this disease I am finally attaining normalcy but then I switched from a highly vegan diet that was supplemented with much fiber and my gut just refused to hear. I would also take heed of Zizzle's opinion on the parasite cleansing. Have no idea what is involved for ingredients but think it probably might not do good for you.

Consult the recipes in Dee's kitchen for a good cornbread recipe. Sure whe must have one and also I use Bob's Red Mill corn bread mix and like it very much. It is GF. Beans as a course for me are something I thought I could never live without since a big protein source for me but no longer. I really do react to the fiber in beans. I am no longer a vegan since I had to have more protein to my system and after 35 years had to go back to meat and fish.

Please continue to read through the rooms and you will find a wealth of knowledge.

Maggie

[ant]

Lulu,

You already have lots of advice, but just wanted to say hello from Asia! best, ant

P.S. My Grandma was called LULU and my Grandfather's plane in WWI was called LULU in her honor. 'Tis a great name!

[Martha]

Welcome, Lulu.

I'm sorry you have MC at a time when you are grieving the loss of your husband. You'll get lots of good advice and encouragement here.

My son lived in Siloam Springs for a few years (for college and a couple years afterwards) and we always enjoyed visiting him there. Pretty country!

[Tiredjen]

Hey there Lulu,

I too am new, so I don't feel like a can add any advice to the others. I just wanted to say how deeply sorry I am for the loss of your husband.

I know how important it is to not feel alone in this disease. This has been a great resource for me, I hope it will be for you as well.

Jen

[lulu]

Couldn't find a place yet for indiv. replies, so will try to address some of them. Yes Martha, the area here is soo pretty, clear lakes, rivers & hills for all to see. Hope you visited Eureka Springs, our little Switzerland, which is beyond beautiful. Siloam Springs is about 30 mls. from me, & my 1st cousin is a professor at the college there, so he may have taught your son. Gary was head of the Eng. dept. at John Brown College & this year part time, as nearing retirement. But since the last 5 yrs. has seen the deaths of my only sis & bro. & husband, & my two children don't live here anymore, just my mom & me, I may be heading to warmer places for the winter when my mom passes. She is the only one left here with me in town, except for cousins & she is a pretty healthy 85 yrs. old, thank goodness.

Zizzle, thanks for your reply. You are so knowedgeable & reaffirmed many things I was thinking, but just hadn't had the time since Apr. to think it through. Yes, am sure the parasite cleanses destroyed any healthy bacteria I had. I believe the black walnut hulls, I think it is, is the main ingred. Also, the Herxheimer effect may have also been a determining factor, have thought. I probably need to get a dairy free probiotic & have thought of that also, as the one's I've had are not dairy free, so stopped taking them when they didn't seem to help. I have hardly sat down since Apr., so would research when had a little time, but not like I should've been doing, so glad I finally found all of you. I knew the salads seemed to make it worse, but had it in my head to eat raw & just couldn't get the time to think it out & read more. Duh. I will try the pepto tabs for a small, overnight trip coming up soon. I'd bought Immodium, but wasn't sure about it.

Maggie, thanks for your good advice also. I think I'll return the Vita Mix. Thought I'd use it for soups also, but so many of them are milk based. I like clear broth soups the best, but even when eating beef/veg stew, I experience D. May be the McCormicks stew seasoning I put in it though, not sure, will start the label reading again all the time. Thanks for the hint about cornbread/beans. Oh, how I'll miss the beans, but first things first. I suspicioned the fiber wasn't helping w/ the MC, but was unwilling to admit it. Like I said, have been a bit apathetic lately, so now it's time get better, hopefully, and concentrate on me more. I have lots coming up this spring that I couldn't get done this summer, so need to be healthier to do it all, so I will get some stamina again.

Also, thank you ant. That's actually a form of my mother's name. Nice story about your grandfather's plane.

Thank you all & can't wait to digest it all and look in the recipe section more. I had briefly looked there. I hope all of you that replied find this posting.

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[Zizzle]

Lulu,
McCormick spices are considered the "safe" gluten-free seasonings based on their manufacturing practices. Unless you are using some kind of mix with a gluten ingredient in it.
I like your idea of making pureed vegetable soups. I need to try that. I ate them alot as a kid. I use an electric stick blender that you can dip directly into the pot where the soup is cooking. Much easier...

[lulu]

Don't think I'm doing this right, will have to get familiar with this more, can't find a reply button to postings all of the time. Thanks again for all of the replies, can't find a reply button for the last one.

Zizzle, thanks for the heads up for the McCormick seasoing info. I love that stuff, so will make sure the stew seasoning has no Gluten in it. I can surely learn to season it better w/o it if I have to, just lazy, as haven't had lots of time to cook lately, nor the will. It's been a long 6 yrs., losing so many family members & sicknesses too. Has to get better now. My children worry about me, and have two 10 yr. old twin (boy & girl) grandchildren to get better for. I may try one of the soups before I decide about sending the Vita Mix back. Lots of trial & errors yet to come, am sure.
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[TooManyHats]

McCormick's stew mix has gluten. It used to be a standard here, but had to give it up.

Welcome to our family. I'm new here so I don't have much to add to the recommendations you've already gotten.

I'm very sorry for the loss of your husband. Stay connected here so you don't feel so alone.

The only thing I can add is that many of us eat gluten free, dairy free, and soy free. Perhaps you could give that a try.

[lulu]

I was afraid of that, Too many hats. I just didn't have any here, so hadn't looked it up yet. Wouldn't you know?! I've often thought through the years, I'd love to have the time to write all of these companies & admonish them for putting preservatives, uneeded sugar, gluten (then because of my daughter's gluten intolerance), etc, in their products. Like they'd care. But I do think some of them are slowly coming around. Thanks for the info.