How many years have people had this disease?

[scrowley]

I have a question, i am just wondering how many people on this forum have had a diagnosis of MC for a long time?
i just got diagnosed and am wondering, does this disease become a life long endevour?
Does it ever go away?
Also what are the primary symptoms people get besides Diarrhea?
mine is only and always gas and nothing else.
whatever that says?
thanks.

[starfire]

I was diagnosed in June of 2005 if I remember correctly. I have not been absolutely free of symptoms since that time.

My initial symptoms were explosive watery D, nausea, vomiting. I do remember going through a period before that of having really bad gas though. Perhaps 2 to 3 months before I had the first nausea/D attack.

Shirley

[harma]

i have the disease for about 2,5 years, but in the 10 years before mild bowel problems called "IBS" or better said no diagnoses, I see it now as pre MC or mild MC.

as far as I know it never goes away, you have it for life, but with the diet, you can get the symptoms very well under control, but as soon as you start eating gluten again (or dairy depending on you intolerances) it probably will come back.

other symptoms I had in the pre MC time gas and bloating, much better now (after almost two years diet), fatigue also that is becoming better lately. Foggy mind or foggy head, also getting better.

I have have osteopenia (thanks to the gluten intolerance)

[karenswans]

I had bloating/gas after eating certain foods since I was a teenager (30 years ago). Two years ago I went to my first gastroenterologist with bad pain in my upper left quadrant. She gave me an upper endoscopy and found elevated lymphocytes in the duodenum. She gave me a blood test for celiac, and it was negative. She wasn't sure what to do next, and coincidentally my health insurance changed at the time so I stopped going to her.

In May of this year, I started having severe D. After 5 weeks of it, I went to my GP. She sent me to a new gastro. He said, "you may have IBS, but you could also have Microscopic Colitis. It's important that we differentiate because the treatments are different." That was the first I heard of MC. He did a colonoscopy, which showed MC, and suggested I go on one of the meds. He told me of the standard options (steroids, pepto, etc). I found this board, and asked my gastro about trying diet. He said it was a good idea to try but if it failed I'd need to do a med. He suggested trying FODMAP.

So, as a long answer to your short question ( ) I was diagnosed this summer, but I believe I've had symptoms that stretch back at least 30 years.

Oh, incidentally, my mother has always related the story that I would never eat more than 2 ounces of food as a baby without screaming. Hmm. Wonder if I was reacting even then?

[Gloria]

I have had it for almost 5 years. My primary symptoms have always been diarrhea and gas. Related symptoms have been mouth and head sores, osteoporosis, and painful joints in my hands. The painful joints go away once I start taking Entocort.

Prior to getting MC, I was able to eat anything I desired with no consequences, but I did react to fresh fruit when I was in my 20's. I was able to eat it again without a problem after I had my children. I haven't been able to eat any fruit without deteriorated BMs since my MC diagnosis.

Gloria

[Jan]

I was diagnosed in August of '05. This spring my colonoscopy showed no signs of MC. I still react if I overeat things like popcorn or salad. I had violent D when I was first diagnosed and then reactions to some of the drugs (Asacol and Colozal to name 2) caused me to spend a lot of time on the couch in a fetal position. I know there is a chance this could show up again so am taking care of myself to prevent any flare. Stress and poor eating habits are two things that will bring it on quicker than anything.

Jan

[Gabes-Apg]

I was officially diagnosed with LC December 2009

based on learnings from this forum i am 99% sure that chronic symptoms were occuring in December 2007

I have had IBS symptoms since my teenage years (approx 26 years) the most prevelant of the IBS symptoms being the cramping pains
due to the IBS symptoms, 10 years ago I started an eating plan that was low gluten, yeast and diary (i was compliant 85% of the time)

primary symptoms in recen times:
- C or MC Mud, given recent events this is the case at the moment
- Cramping pain near my colon
- GERD (more acid reflux than heartburn)
- Fatigue and Joint aches (if i ingest trigger foods, or have high amounts of stress or when i have undergone procedures ie: oral surgery)

[Deb]

D started in July 2010.... LC diagnosed in September 2010....Enterolab in October 2010. I am maintaining quite well at this point by just eliminating gluten but I know that isn't necessarily the norm. I kind of believe that my relatively quick diagnosis helped my pretty quick abatement of symptoms.

[JLH]

Diagnosis three years ago June but lots of D previously. I had lower left quadrant pain which lead me to my first (really late) colonoscopy. Diverticulitis was the cause of my pain and I was sent home and told to eats lots of fiber. I had months and months of D and finally called the GI and said I was about to become a recluse. Had a sigmoidoscopy where LC was diagnosed. Found EnteroLab and went searching for info on their legitimacy and found the PP. Read and read and a few days later went GF. Did very well until soy reared its ugly head..........

[MBombardier]

I had a colonoscopy last September since my GP and my gyn were both on me because I am over 50. A friend had just died of colon cancer, so in a weak moment, I agreed. When the nurse asked in my pre-op appointment if I was having any symptoms, I casually mentioned that I had been having diarrhea, all the time. I didn't remember for how long. Based on that my GI took about 25 biopsies throughout my colon, all of which came back positive for collagenous colitis. I had no idea he was taking the biopsies, or why, and had to ask how to spell my diagnosis. Looking back on it, I probably started having trouble with diarrhea between 7 and 9 years ago.

In researching how to get well, I found out that there is actually no cure, though symptoms can be managed with more or less success. When I ran across Dr. Fine's site I decided to go GF and joined this forum about two weeks later. Since then, I have found out that I am intolerant not only of gluten but all grains, legumes, and dairy. When I eat right, I feel, look, and act like a young woman, something I thought was gone forever.

[natythingycolbery]

Symptoms started June 2010 diagnosed August 2010, pretty much in remission from Aug 2011... however I did and do still occasionally suffer from Constipation and gas

[MaggieRedwings]

Well over 10 years and diagnosed in 2000.

Maggie

[scrowley]

I had no problems ever until getting this in january.
ate everything and anything and it came out of nowhere.
now i cant seem to eat dairy, nuts, high fiber, high fat, chocolate, caffeine, alcohol, lentils, wheat etc.. without getting D.
I seem to be able to tolerate white bread fine.

[sarkin]

It's hard to know what we react to - if you're still eating white bread, you may not actually be reacting to some of those other things on your list, or it may be exacerbating your reaction to those things.

I was diagnosed in '97, and had no idea about the diet connection. Luckily for me, my symptoms went away (except for rare days, when I thought, "I must have eaten something"... little did I know).

My MC came screaming back in March of this year, and this time an Internet search turned up this forum. In '97 there was nothing useful on the 'Net at all.

Symptoms-wise, I am great most days, and better all the time. I would never eat gluten or dairy again - I feel better than I have in years.

--Sara

[tex]

Sara,

Actually, there was someone offering support for MC as far back as August, 1995 - Judy Malinowski. Here's a link to her archived home page. Click on the link that says Newsletter Archive, in order to see those original newsletters.

I believe that she was the first, and Sally Read followed with the first internet MC discussion board, after the turn of the century. I'm not sure exactly when Sally started her board, because I didn't stumble across it until July of 2004, but maybe Polly or one of the other pioneers here remembers when that board was started.

http://web.archive.org/web/200305060159 ... olitis.htm

You can click on Newsletter #220, for example, to see a post by Polly, which shows that Sally's board was already up and running before November, 2002.

You can click on Newsletter #200, for example, to see a post by Barbara, from November, 2001.

Apparently Sally's original board, (hosted on Yahoo), was started in August 2001, as per her announcement in Newsletter #195.

http://clubs.yahoo.com/clubs/collagenouscolitissupport

Yup. There it is. Our very own group. I hope that you will join and take advantage of whatever we have to offer each other in the way of information, stories, gripes, ventings, jokes (please, yes, some humor), comfort, companionship, hope, desperation....and, if it all works out, friendship. We all have something in common, after all. And, the thing we can give each other is the truth that we are not in this struggle with CC/MC alone. We are in good company.

Here's a post by Sally on an early IBD board, posted in October, 2001, describing her concerns about taking Imuran, after Lotronex was withdrawn from the market, in August of that year, 9 months after it was given fast-track approval by the FDA:

http://www.ibdsupport.org/forums/topic/ ... do-i-have/

Those were stressful times for anyone with MC. Dealing with the disease is easier, these days, (believe it or not), because we have all their experience to draw from and build on.

Love,
Tex