Age of onset?

[Blueberry]

The whole value of different tests is an interesting topic also, from the widely used basic Friedewald cholesterol test not being predictive of heart disease, to mammograms not being helpful and possibly harmful, and the PSA test causing more problems than doing good. I finished reading Professor Richard Ablin's book on the prostate cancer screening test recently, Dr. Ablin discovered PSA, and the widely used test isn't detecting cancer. As he mentions in the book, the tests use remains for a couple reasons, fear of developing deadly cancer naturally, and secondly that without the PSA or similar tests up to 50% of Urologist's would be without work. I thought the book was a good read about prostate cancer and the cancer industry overall.

"The Great Prostate Hoax: How Big Medicine Hijacked the PSA Test and Caused a Public Health Disaster"

http://www.amazon.com/Great-Prostate-Ho ... ords=ablin

[HappyBird]

Hello Tex........

You are possibly right that the real players are the unseen powerful drug companies and private hospitals.
We have friends in the medical profession, mostly specialists now. Doctors generally are not good business people for running hospitals from the financial aspect and many in the UK never do private work. Doctors generally float along dictated to by hospital protocols and policies set down for them and prescribe from a limited list of medicines. I think so many are so far from the decision making function and don't question everything the hospital management ask of them. They see heir patients and concentrate on the patients. Gone are the days when your hospital Superintendant was a doctor - they are more likely to have had retail experience than experience in the field of medicine. I think we took several steps back here.

[tex]

And to make matters worse, in this country at least, the big clinics hire dozens of GI specialists (for example), but it doesn't really matter much which specialist a patient sees, because they all are pretty much forced to play from the same rulebook that's dictated first by the insurance industry, modified by the hospital/clinic administration, and then interpreted by the head of the department (A GI doc him or herself), who specifies the actual diagnostic and treatment policies based on the remaining options that haven't been ruled out by the higher-ups. The whole thing is bound to be mighty frustrating for physicians. It's no wonder that burnout is a major problem.

And if a patient can't get the care she or he needs from their current doctor, or if they want a second opinion, often there's little point in seeing another doctor within the same institution or the same network, because they may be stuck with the same rulebook. Patients usually have to go elsewhere, maybe even another part of the country, if they want to get away from like-minded health care policies. I'm sure there are exceptions, but there are a heck of a lot of rules and regulations in medicine these days, that didn't exist a few decades ago. I don't know about the rest of the country, but in Texas, hospital mergers are all the rage these days.

Tex

[Gabes-Apg]

Even with just 32 votes, the results debunk the belief by medical fraternity that it mostly occurs in women over the age of 65.....

[Lucy_B]

Yes, it's a very interesting spread! Although most of what I've read indicates that the average age of onset is between 50 - 60, so if that's true, these results may confirm it. Of course, I might be looking at unreliable sources ( http://www.ccfa.org/resources/microscop ... oogle.com/ , https://my.clevelandclinic.org/health/d ... ic-colitis , http://ibdcrohns.about.com/od/faqsmcccl ... olitis.htm ). I'd love to see the stuff you're reading, Gabes! I'm sure you're a lot more well-versed in this disease and research behind it than I am. :) I probably should have changed the title to: "How old were you when you first developed MC" and included age as a factor (i.e. 10 - 20, female; 10 - 20 male; etc.). I'm also interested in knowing how many of us have collagenous vs. lymphocytic colitis. Does that poll exist, does anyone know? I didn't find it with a quick search but I feel like it has to be out there. These polls are so neat!

[Gabes-Apg]

Lucy
i am referring to the information on the internet, wikipedia, most GI specialists websites etc and the recent brochure that Happy put a link to in the book section
The current 'belief' by majority of the medical fraternity is that MC is mostly in women over the age of 65
because of this, many GI specialists do not take biopsies during colonscopies and look for MC in people under the age of 65.

We know from the members and contributors of this board that this belief is bullsh*t -
MC can occur at ANY AGE, new born, teenager, young adult, etc

Until the wider medical fraternity open their eyes and minds to the reality of all ages, many people will spend years with symptoms and no accurate diagnosis. And as we also know, MC is not like other IBD's.

[Lucy_B]

So true. I guess I'm lucky that my doc knew enough to suspect it based on my symptoms (I'm 34). But the fact that I didn't know anything at all about the existence of MC until actually diagnosed with it is a testament to how neglected it is by the medical profession. When I had my first bout with chronic D about 10 years ago, MC was not tested for nor even considered as a possibility. Instead, the doctor surmised that I "might" have Crohn's disease because of some non-specific TI ulceration and put me on Pentasa. Prior to that diagnosis, I'd done tons of my own internet research into diarrhea, IBS, IBD's, etc. and never came across any information about MC. Just goes to show that it's not getting the attention it deserves!

[HappyBird]

I never came across any information about MC. Just goes to show that it's not getting the attention it deserves!

I was very surprised to hear about MC myself, that's after many years working in professions close to medicine. My GP hadn't come across it and he's been qualified at least fifteen years. Other doctors we know......the same.

There needs to be more information out there for the general public and doctors.

[Lucy_B]

Isn't it crazy? And I was (still am) an avid internet researcher when it comes to health stuff. But MC never came across my radar until now. I am really glad to have found this group!

[shona]

voted (on behalf of my mum)

She was late 50s when diagnosed but had symptoms for approx a year before colonoscopy with biopsy, then another 2 years after colonoscopy before anyone bothered reading her pathology report to see they had written CC.

[mcardle3]

I was deemed IBS-D from age 25 - age 56!

I had many colonoscopies, sigmoids, barium enemas, barium swallows and gut studies all along the way, but no diagnosis.

Last year I ended up in the hospital for a week with severe dehydration from ... constant water diarrhea and still after all the tests they ran...nada.

Finally found my way to the University of Michigan where the doctor listened, looked at my history of anal fistula, and all manner of other wonderful things and had the knowledge to look deeper, and found it. That is a LONG time to go with diarrhea!

[Lucy_B]

Wow...that's an insane amount of time! Can't believe no one caught it sooner- yikes. Teaching hospitals are hands down the best places to go for medical answers, in my opinion (I speak from experience). They really care about what's going on and will actually take the time to figure things out. Glad you found one!

[mcardle3]

Wow...that's an insane amount of time! Can't believe no one caught it sooner- yikes. Teaching hospitals are hands down the best places to go for medical answers, in my opinion (I speak from experience). They really care about what going on and will actually take the time to figure things out. Glad you found one!

My scleroderma clinic and doc are there and they suggested I give the GI dept a try...so glad they did!

[Alchemy1]

I've been sick with MC since 2007, although I was not diagnosed with collagenous colitis until 2010. I was wondering how many people in this forum were misdiagnosed, as I was, with IBS. I knew something was horribly wrong with me, but just lived with the symptoms until I collapsed at work one day. We were outside in 100+ degree heat & were walking an old landfill cap for inspection purposes. I was so dehydrated and weak from constant diarrhea, plus I was wearing "snake gaiters", which are heavy and make you sweat a lot more. One minute I was upright and feeling horrible, the next I was on the ground! They sent me to the ER, where I spent 12 hours having useless tests. My doctor reviewed these and labeled me with IBS. I was sent away to suffer until I moved to Santa Fe three years later. My disease had progressed to the point where my life had taken on the tones of a maroon nightmare. I spent so many nights asleep on the commode I can't bear to think about that period of my life. I also had a long commute to work, which was it's own sort of hell. Believe me, I knew every place there was to stop for a bathroom break! I received several speeding tickets as a result of a panicked run for a commode. I had also literally learned to fix my face and hair, and to get dressed in the morning, while sitting on the throne. Since all of my work was performed in the field, I had to carry a portable "latrine" in my backpack. Fortunately, I worked with people who were understanding and kind so it wasn't as horrible as it could have been from a social standpoint (although I did overhear many people speculating that I was anorexic). I finally got so ill that I lost almost 30 lbs. in three months. I was going to the bathroom up to 50+ times a day but my doctor still couldn't figure out what was wrong. All the tests were coming back negative. It wasn't until I looked like a walking skeleton, and had lost 10 pounds in two weeks, that my doctor sent me to a GI specialist. FINALLY, after years of suffering I had colonoscopy with biopsies and was diagnosed with collagenous colitis in late 2010. I was treated with Asacol HD, but that only partially helped my symptoms. It wasn't until I had major neck surgery, and was put on opioid pain meds, that the horrible symptoms finally abated. I now know that these drugs are only masking what is going on in my body and I am getting quite ill again despite the Asacol and the opioids. I plan of having the fecal panels done in order to find out what foods are making me sick. I want my life back and, for the first time in many years, feel like I have some hope! I'm so grateful I found this site because I was starting to get very despondent and depressed.

[tex]

Hi Kim,

Welcome to our Internet family. Your story is very familiar to many of us, because we had similar experiences before we started searching for a better solution. A diagnosis of "IBS" simply means that the doctor doesn't have the foggiest idea what is actually wrong, and in the past, such mistaken diagnoses were very common. Up until a few years ago, MC was considered to be a rare disease, so they rarely looked for it. That made the illusion that MC was a "rare" disease a self-fulfilling prophecy, because you can't find MC unless you specifically look for it. Fortunately though, many GI specialists are beginning to look for it these days.

The stool tests are an excellent way to begin your recovery, because they can greatly simply the task of selecting a recovery diet that will allow your digestive system to heal. After years of damage, it may take a while to completely recover, but you obviously have the motivation to accomplish it

Please be careful with the opioids, because they are very addictive, and many people are now living a nightmare because they are unable to stop using them. There is a risk that as you begin to get your MC symptoms under control, the opioids might cause severe constipation resulting in a blockage. Hopefully that won't happen, but please be aware of the risk, and seek medical aid if it seems to be happening.

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

Tex