Questions from a newbie

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Cyn1
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Joined: Tue Apr 01, 2014 7:40 am

Questions from a newbie

Post by Cyn1 »

Hi Everyone, This is Cyn, who posted last week, a newbie! I forgot my password and had to be think of a new name and password! My mind is just not with it at all.
Well, I saw the GI guy--you guys were so right! He tried to explain MC to me, but I had read so much that I already knew what he was telling me! :oops:
He did tell me that I have an autoimmune issue!
Also, to stay away from raw fruit and veggies..to slowly get into a normal diet??
Is that possible?
He did send me the 'official' information the doctors use when researching diseases. It is from "Up to Date" and he sent it to me via e-mail.
He did give me a script for budesonide ec 3mg twice a day. If no relief to increase it to 3 times a day.
We will keep in touch via Patient Site (email) or phone calls. I have a follow up in 3 months with him.
I see my own PCP later this month.

My Questions:
I had my colonoscopy 10 days ago. I have not had D since then!!! I do not understand it!!! :shock:
I have been eating a lot of non-fiber foods... I have had bread, cheese, cereal and even a salad! I just have grumblings and gas...Can this happen??
I have not had any fruit or veggies, or orange juice. I think those are my 'new' triggers.
It seems like the prep for the colonoscopy, cleaned out the bad stuff in my colon...Does that make any sense?
I think I read that someone else here had a temporary remission after her procedure. She quickly had another attack because mushrooms are her trigger.....

Also, I have not taken any NSAIDS for months now; but I really need something for the soreness in my shoulder. I am afraid to take tramadol-it makes me too loopy and does not really help the pain..
My shoulder is sore, especially after PT. Tylenol does not help.

And:
Is there anything I should talk to my PCP about regarding Autoimmune Disease? Any preventative measures I should take? I do not want anything else popping up in me..
Asthma, allergies, arthritis(osteo), hypothyroid, anxiety, depression, had shingles recently, etc...
no more!! please! :sad:

Thanks again all---gotta start reading Tex's book---just got it...
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tex
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Post by tex »

Hi Cyn,

The next time you forget your password, just email me, and I can assign you a new password, which you can then change to whatever you want, after you log in. That way you won't lose your previous posts (that is, they won't be lost to a new account).

If you want, I can reassign your old posts to your new account, but I would have to delete that account first. Please advise, if you want me to do that.

Some people who have drug-induced MC are fortunate enough that when they totally avoid the drugs that caused their MC, they can remain in remission without further intervention. Most of us are not that lucky, of course. So it's possible that at as long as you avoid NSAIDs, you might be able to remain in remission.

In a few cases, the cleanout prep for a colonoscopy exam has been known to induce temporary remission (apparently by washing out the antibodies to food sensitivities). The period of remission is unpredictable, and it may be measured in days, weeks, or months, rarely years.

It's also possible to experience a period of spontaneous remission (for no obvious reason), just as with any other IBD, but unlike the other IBDs, periods of spontaneous remission seem to be rather rare for most MC patients. Most of us have to continually maintain our treatment program, or we will suffer a relapse of symptoms.
Cyn1 wrote:I have had bread, cheese, cereal and even a salad! I just have grumblings and gas...Can this happen??


The grumblings and gas are symptoms of increasing inflammation, so I am guessing that your current respite from D is due to the cleanout prep purging your digestive system of antibodies (which are most likely now rebuilding).

If tramadol or acetaminophen are not effective, the only remaining options for someone who has MC would be the narcotic-based painkillers. Natural painkillers (such as Boswellia serrata) are a possibility, but so far none of us have found them to be very effective.

The most effective way to prevent the future development of autoimmune-type issues is to keep your vitamin D level well up into the safe range, but I doubt that your doctor will tell you that. Doctors make their living treating disease, not preventing it, so most of them don't bother to learn how to effectively prevent disease. Vitamin D deficiency is directly correlated with the development of all autoimmune-type diseases. The lower the vitamin D level, the higher the risk of developing autoimmune diseases.

Also, note that IBDs (including MC) significantly deplete most patients' vitamin D level. That's why people who develop an IBD, have a much higher risk of developing additional autoimmune-type diseases, when compared with someone in the general population. And most people who develop an IBD, have a vitamin D deficiency in the first place, which is one of the reasons why they developed the IBD. The amount of vitamin D supplement recommended by most medical and government authorities, is way too low for anyone who has an IBD, because virtually anyone who has an IBD also has a digestive system malabsorption problem. That's why most of us here are taking higher-than-what-is-considered-normal amounts of vitamin D.

Tex
:cowboy:

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.
Leah
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Post by Leah »

Hi Cyn.
Lucky you to have a break from symptoms, but the rumblings are probably a warning of things to come. Salad IS FIBER. BE CAREFUL! I also have a huge problem with fruits and fructose. Even after 2 years and being able to add many things back in, fruit still remains a problem for me. That is due to not producing the enzymes that break down the sugar.

I guess you won't need to take the Entocort unless your D comes back. It could give you C if you do.

Hope things stay good for you, but if things start to slip, please rethink the gluten and dairy.

Leah
maestraz
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Post by maestraz »

Hi Cyn,
I was also given a script for Tramadol but have been afraid to take it.

My rheumatologist gave me a script for Voltaren gel, which is a topical NSAID. I have been using it for knee and shoulder pain with good relief.
Suze
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