A few questions yet again--mucosaheal, disobeying, etc.

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LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/1/2009 10:53 PM (GMT -7)   
I have an appointment tomorrow with my GI, and I'm tempted to ask him about mucosaheal. Last time I mentioned natural supplements he said 'no' because they are unsafe, and I can understand this completely in light of many being inadvertently laced with toxic ingredients like mercury and lead. Then I asked about digestive enzymes and he said I didn't need them..so I'm just afraid if bring this up he will say no.
So far he has been right since bee propolis overpromised and underdelivered. Same with the digestive enzymes as far as I can tell..
So, I thought about trying mucosaheal. I just don't want to spend money on something that turns out to be harmful, and I really don't like going against my doctor's orders. I really respect this one.
Just wondering what most of you do in that situation. And if any of you have tried mucosaheal. I've heard about it for quite some time now but am never sure. I think the marshmallow root ingredient is what I was apprehensive about since I heard it can affect some negatively.

I'm just really trying to make some big changes as far as what goes into my body...
I haven't cut out grains and certain starches completely--I love blue diamond pecan thins and silk chocolate soy milk--but I have made some pretty significant as far as diet goes. Still going through frequent urination(up to 3-4 times every 30 minutes sometimes), and possibly blood in stool though it is difficult to tell when it starts to become solid and am introducing new things into the diet(could it be the chocolate soy?).

I just know that there are quite a few things I want to address during tomorrow's appointment e.g. bones clicking when I move them now(prolonged steroid use?), possibility of UTI, feelings of stress belied by outward appearance heh..., having what looks like mucus or fat on stool occasionally(had this before I was diagnosed, intermittently), and so on.

And then there are those of you who I know disregard your doctor's orders because you really do know better. I'm looking for some personal experiences here with the products, problems, and questions I mentioned.
Money is tight, but I figure investing in more good probiotics, a good multivitamin(found a good prenatal natural one at walgreen's), some sort of drink supplement free of sugar and gluten, and of course the usual healthy and organic foods from natural grocery stores, is better than suffering long term from refusing to try anything but modern medicine and being okay with eating 'whatever.' I really believe in the basic rules of the SCD...the more in depth I go with my biology studies in class and out the more I agree and understand WHY Elaine Gotschall wrote what she did.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/1/2009 11:23 PM (GMT -7)   
And also, take it as a rhetorical question, in the difficult times we are in and with all the bills we have to pay, what appeal is there to pay 40 dollars for a supplement that may not even help me when I can get a prescribed medicine for 10 dollars that I know helps me?
There should be an easier way to try these things.
Example?:
prednisone=$10.00
works
mucosaheal=$40.00 including shipping
who knows? a scam?
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/1/2009 11:41 PM (GMT -7)   
I have an appointment with my brand spanking new GI late this month. I also wonder what I should bring up, and what I should keep to myself. I think I'll tentatively mention that I've changed my diet to eliminate gluten, and if see if she seems at all interested. If so, I'll drop the bomb that I'm 100% SCD, and have already been able to eliminate my acid reflux meds. I hope she doesn't poo poo it.

I know what you mean about the cost of supplements. I tried Cat's Claw years and years ago, but it didn't do anything for me. I've tried some other things over the years too, but I only wasted time and money. I just dropped $35 on some enzymes last week. I see they didn't work for you, but I've read that it could be helpful if your eating SCD, so I'm giving it a shot. It sure is expensive trying to get healthy!

I'm afraid I didn't answer any of your questions, did I? Hopefully someone else can come along with more helpful tips :).

EDIT: I have disobeyed doctor's orders a lot. I didn't take iron supplements when they were prescribed because I knew they did me more harm than good (based on past experience). I also only took 75mg of Imuran when I was supposed to be taking 100mg, because 75mg was the most I could tolerate. I told my GI how terrible I felt, but he just ignored me, so I dropped the dose myself. When I started Humira, I silently dropped the Imuran altogether. If doctors just paid more attention to what we tell them, we wouldn't have to be so sneaky!

Post Edited (spookyhurst) : 2/1/2009 11:46:51 PM (GMT-7)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/2/2009 8:17 AM (GMT -7)   
I have found that most suppliments that are most expensive then the prescription meds are usually a scam.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/2/2009 10:06 AM (GMT -7)   
No no I agree definitely, but am wondering if there is anything AT ALL to some of these. I thought to myself 'maybe try mucosaheal' until I saw how much shipping was. It's moderately priced until you actually order it and then it is 40 dollars. Puh-leeze.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted 2/2/2009 10:27 AM (GMT -7)   
As for being sneaky, I clearly remember my son's GI telling us that nearly 80% of his GI patients take some kind of supplement but only about half of those people admit to him that they are. (I have no idea how he arrived at those figures.) Maybe they expect a certain amount of sneakiness? smilewinkgrin

As for some of the supplements mentioned, I think its possible that one's healing needs to be further along to be able to discern noticeable difference--digestive enzymes come to mind here. Don't write them off forever; maybe try again later... My mom uses them and left behind her acid reflux meds. I have my son take them, too. As for the mucosaheal, my son used a very similar product on two occasions called Crohn's Clear, but it seems to no longer be available. He said it "felt better in his stomach" than boost or ensure, so it seemed like it was well worth it. He drank it exclusively on one occasion for 10 days to stop a flare. Even now he will get it out on a rare occasion and drink a glass. He says it's soothing. I still have a container of it, but once it's gone I'll be ordering the Absorb Plus just to keep on hand.

LMills, it seems to me that you are wise beyond your years! Trust your instincts! Also, I think you would really enjoy the SCD yahoo group, since by your signature, it seems you're practically doing the diet already. They are so supportive and knowledgeable! I pretty much just lurk and read...

Spooky, I'll be interested to hear if your GI is interested in what you're doing! I brought it up to my son's GI and decided I might as well have been speaking a foreign language.rolleyes There was essentially no response.....oh, maybe a little "yes, some people may find some relief by eliminating certain foods...", but that was it. I explained, no, this is a specific diet which eliminates specific carbs... nope... didn't phase him. Yet, he RAVED about how well my son was doing... I don't get it... (My opinion in retrospect is that he's fully aware of the diet...)

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/2/2009 12:19 PM (GMT -7)   
EMom, I'll let you know what my new GI says about SCD. My old GI said food has nothing to do with Crohn's eyes.

Margie11
Regular Member


Date Joined Aug 2008
Total Posts : 467
   Posted 2/3/2009 12:07 AM (GMT -7)   
I am in the natural products business and I would be very leary of supplements I don't buy from a brick and mortor store. I am very careful when I buy anything on line, even products I use everyday. I never know when the product expires, unless it is in my hand.
              Never go faster than your guardian angel can fly!                  
     Be Patient And Tough, Someday This Pain Will Be Useful To You 
 
 Crohn's for life, symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Great control on SCD (when I'm good) and I get by with a lotta help from my friends!
                                                Margie11

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