Just found out that I have CC

Joefnh · Post by **Joefnh** » Fri Apr 23, 2010 4:56 pm

Hello and I would like to say that since my diagnosis this week i have been reading on this forum and already feel a bit better. It has been a long and painful road, but finally a keen eyed doctor decided to look a bit further with a colonoscopy and the biopsies were positive for CC (collagenous colitis).

I will be starting on Endocort this week and am a bit apprehensive since it is a corticosteroid, can anyone shed some light on this concern

My main symptoms have been the big D 7 - 9 x day and a lot of abdominal pain, joint pain and eye irritations (iritis and uveitis). Does anyone know if the Endocort will help with the eye and joint problems?

Thanks in advance

--Joe

angy · Post by **angy** » Fri Apr 23, 2010 5:12 pm

joefnh,

sorry you have been diagnosed with cc, you have come to the right place here ...We are a wonderful family and will help you as much as possible to enable you start the road to recovery... and hopefully remission...

There is a wealth of knowledge here and you will not find this with any medical doctor...our members are real life sufferers and their support is what made me well today....I wish you the best with your recovery...

Post by **tex** » Fri Apr 23, 2010 5:47 pm

Hi Joe,

Welcome to our internet family. Regarding your question about Entocort:

Entocort EC is arguably the "safest" effective medication available for treating MC. Unlike the other corticosteroids, Entocort is enteric-coated, so that it doesn't become activated until it reaches the lower third of the small intestine, and the colon. That means that only about 10 to 15 % of the active ingredient is absorbed into the blood stream, which greatly minimizes the risk of the side effects that the other corticosteroids are notorious for.

As to whether or not it will resolve all of the symptoms that you named, it probably will, but Entocort does not prevent the inflammation from forming, it only suppresses it after it is generated. That means that it must be taken, (usually at a lower dose - a maintenance dose), for the rest of your life, in order to prevent relapses.

The alternative is to modify your diet, in order to prevent the inflammation from developing in the first place. Many of us here control our symptoms by diet alone - no drugs, and some use a combination of diet and meds. The joint pains and eye issues are usually due to gluten sensitivity, and they will resolve on a gluten-free diet, even though most GI docs refuse to believe that diet has anything to do with MC.

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

Tex (Wayne)

Joefnh · Post by **Joefnh** » Fri Apr 23, 2010 5:58 pm

Thanks Angy and Tex. I will have to admit I am a bit frightened by all this. My colonoscopy was first time being in a hospital with me as the patient... I am currently reading the book "The Makers Diet" which covers the various autoimmune diseases. Between what I learn form this site and whats in the book, I will hopefully address diet next.

What are some of the areas in the body that CC (MC) affects besides the GI tract.

--Joe

Today’s Challenges are Tomorrow’s Success

angy · Post by **angy** » Fri Apr 23, 2010 6:01 pm

I get aching muscles and feel tired a lot, but dont let that worry you.

Joefnh · Post by **Joefnh** » Fri Apr 23, 2010 6:04 pm

Thanks Angy, I have has those symptoms for about 12 years. I was originally diagnosed with FMS

--Joe

Post by **tex** » Fri Apr 23, 2010 6:28 pm

MC is a life-altering disease, and unless you control the symptoms, it will control your life. If you're gluten-sensitive, (which is usually triggered when MC is triggered, but in some people it exists before MC comes along, and in fact, untreated gluten-sensitivity can cause MC), any part of the body can be affected, because gluten can cross the blood/brain barrier, to cause neurological damage. Also, both MC and gluten-sensitivity often cause the leaky gut syndrome, (LGS), and with LGS, the tight junctions in the epithelia of the intestines open when they shouldn't, (and open too wide), and partially digested peptides can be absorbed by the bloodstream, and deposited in various organs, (such as the joints, and the eyes, etc.). Those peptides behave as foreign debris, and cause inflammation, wherever they are deposited. That's where your aches and pains come from, (including arthritic symptoms).

You can get your life back, but each of us has to work out a treatment plan that works for us, and fits our lifestyle. There is no such thing as a one-treatment-fits-all. We are all different in our symptoms, and there are individual differences in how we respond to the disease, how we respond to meds, and how we respond to diet changes.

Tex

P. S. Your earlier symptoms are almost certainly due to gluten-sensitivity.

Joefnh · Post by **Joefnh** » Fri Apr 23, 2010 6:33 pm

Thanks Tex, it sounds like this is going to be quite an experience... I am just coming up to speed on this. After my FMS diagnosis, I dealt with that for 11 years. More recently I have bee have full blown big D for 11 months with the FMS symptom going crazy. That's what resulted in the colonoscopy etc..

I see you are from Texas, which part? I spent 3 years in Austin working for AMD in the early 90's

--Joe

Today’s Challenges are Tomorrow’s Success

Post by **tex** » Fri Apr 23, 2010 6:39 pm

I hear you - I was sick off and on for a couple of years or so, but I finally broke down and went to a doctor, when the D started, and wouldn't stop.

I live out in the country, (on a farm), roughly 50 miles north of Austin. I've always been a big AMD fan - all my computers have AMD processors.

Tex

ant · Post by **ant** » Sat Apr 24, 2010 4:02 am

Dear Joe

Welcome from Hong Kong! I do not think I can add anything to the advice already given. Just keep reading all the experience and wisdom on this site, and all the best on your journey to remission.

Ant