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Is Crohn's the new black?

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Crohn's Disease
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Posted 4/19/2009 2:35 AM (GMT 0)

this is an odd post, but my massage therapist, very nice man I have known for years, told me the other day that all of a sudden, he keeps hearing of folks being diagnosed with crohns--HIS WORDS, "like a few years ago with fibromyalgia." so he got me thinking, is there more crohns, more diagnosis, or is he just anecdotally hearing things? I had never heard the word crohns 3 years ago when I was diagnosed, but still rarely hear about it. thoughts??

Posted 4/19/2009 2:40 AM (GMT 0)
If this is true and I can't say that I have heard it, frankly, this is one curve I am not thrilled to be ahead of.
Posted 4/19/2009 3:09 AM (GMT 0)
I don't know. I'd never heard of it before I got sick, but it seems like more and more people have friends/relatives with it or UC.
Posted 4/19/2009 4:05 AM (GMT 0)
No I don't think so. With CD there is more physical evidence than with fibro. I think that in general more people are getting IBD because of environmental factors.
Posted 4/19/2009 4:36 AM (GMT 0)
Seriously, Everyone I know seems to know someone with it now. I hear alot about environmental factors but I have a feeling it's just one factor, one man made thing in the last 50 years. Probably some useless additive that triggers it.
Posted 4/19/2009 5:28 AM (GMT 0)
My dad had crohn's when I was growing up, and to me, it was this strange disease that no one had ever heard of before. My dad said no one he knew had ever heard of it either. A couple years after I was diagnosed (about 10 years ago or so), it seemed like a fair amount of people knew someone who also had crohn's. Today, it's unusual for me to talk to someone who hasn't at least heard of crohn's. At my local dog park, there are 3 other woman that I know of who have crohn's.
Posted 4/19/2009 6:41 AM (GMT 0)
Well, my experiance, I got sick with it 18 yrs ago and had only heard the term once from an old high school friend I ran into and in passing she mentioned she had CD and I asked her what it was but like I said we were in passing (I think her more so than me cuz she was probably looking for the can at the mall to use) so all she got out was "it's a stomach disease", so then of course I was still unaware of what it really meant when she said that, then get this, about 6 months later I get sick with it myself, run into her again at a grocery store and I freaked her out when I told her I had it too cuz she was like "when I gave you that simple explanation of what it was you looked so confused" and I was like "ya, but I sure as heck know exactly what you meant now cuz I'm living it too". Bizzare eh.

Then I run into one other friend from high school and we started hanging out for quite a few yrs (cuz besides me and her being friends our hubbies were also friends) then we drifted apart (she got divorced) then we ran into each other a couple yrs after we had drifted and she tells me she has UC. My son plays alot of sports (started baseball at the age of 4) and I've definitely met with a lot of people that have either UC, CD or IBS over the yrs to recently even. so basically here and there over the yrs I've run into quite a few people that either have it themselves or has a relative or knows someone eles that has an IBD.

Part of it to is that maybe more people are getting checked for it when they start having the changes from basically being normal to getting sick (I think alot of people many yrs ago lived in denial or were too embarassed to even talk to their docs so they'd hide it as best they could from people). If there wasn't such a stupid stigma about having to poop in our society I think the stats would show even more people with IBD then they currently show.

:)
Posted 4/19/2009 2:58 PM (GMT 0)
In 2000 when my best friends brother got very sick and no one could figure out what was wrong with him, everyone thought he was going to die. He found out after 18 months of dr and test that it was crohn's. I hadn't heard of it before. I live in a very small town, but come to find out there was another man (who I acutally knew for years) that has crohn's and a colostomy bag. I guess I assumed I would have known that he had the bag, who knows. I was dx'd in 2006 after being sick for almost a year before and I was shocked at a handful of others I knew/knew of had CD or someone in their family did. Now, I bet I've heard of 20-30 people who have it. The village I live in only has 2200 people so it's small. Not all of those people live here, but someone in my town know them. I think it's just becoming more known about whereas in the past it was misdiagnosed as IBS or something.
Posted 4/19/2009 3:18 PM (GMT 0)
When I was dx there were no gi docs in town, now there are three.  To get dx I had to travel 300 miles to U of I med center in chicago. They found a gi doc in St Louis, 120 mile away, that became my doc til he retired.  Back then no body ever heard of crohns.  It is my opinion that there is better dx and what ever bug is causing crohns is becoming more wide spread.  JMHO.
Posted 4/19/2009 4:23 PM (GMT 0)
I know 4 people from my small high school and three people from my small law school and 2 people from my previous work and 2 people from my current work with CD or UC so I would say it is more prevalent.
Posted 4/19/2009 4:47 PM (GMT 0)
i've been keeping my crohn's a "secret" from almost everyone for 20 years...now that i'm finally telling people it does seem like everyone knows someone with this ^$&*&$ disease!
Posted 4/19/2009 9:22 PM (GMT 0)
interesting hearing ideas about this. Is it like when you are pregnant (or have a new car) and you just notice it more around you, or is it really being diagnosed more. I agree that people are being tested more. I am sure many of those with crohns in the past just had "tummy troubles" like my mom.
Posted 4/20/2009 12:10 AM (GMT 0)
I have been told for years that I have IBS. It wasn't until I swallowed a pill camera last year that my diagnosis became "Ileitis, probably Crohns's." I wonder if the possible increase in Crohn's diagnoses is due to better tests.
Posted 4/20/2009 2:12 AM (GMT 0)
It's true, it's becoming an epidemic, and statistics confirm this. There has been an increase of over 300% in newly diagnosed cases in the past 20 years across the Globe. Genetic factors CANNOT account for this, so it's becoming clear that it has to be something in the environment. In that sense, all the research that is being done in the area of immunology and controlling or "turning-off" the immunological response is IMHO a blind alley. What the researchers should be focusing on is finding these environmental factors and finding a way to neutralize them. Whether it is a virus, a bacteria, a chemical, or something else, it doesn't matter, until we can positively identify the cause and treat it this disease will NEVER be conquered. Unfortunately, it seems that the big pharma companies are only after maximizing profits, and current mainstream approach favors this... I have high hope in independent researchers though, they're doing some amazing things and I'm willing to bet that the eventual cure will come from one of those teams.
Posted 4/20/2009 2:37 AM (GMT 0)

DocGonzo said...
What the researchers should be focusing on is finding these environmental factors and finding a way to neutralize them. Whether it is a virus, a bacteria, a chemical, or something else, it doesn't matter, until we can positively identify the cause and treat it this disease will NEVER be conquered. Unfortunately, it seems that the big pharma companies are only after maximizing profits, and current mainstream approach favors this... I have high hope in independent researchers though, they're doing some amazing things and I'm willing to bet that the eventual cure will come from one of those teams.

DocGonzo, I totally agree, and God bless the independent researchers!
Posted 4/20/2009 2:43 AM (GMT 0)
Even though I'm forced to put my faith in biologics right now, and I'm very glad that they're an available option for us, I agree with doc that the breakthrough (if it ever happens) will be something very simple and inexpensive.
Posted 4/20/2009 5:58 AM (GMT 0)
I was actually thinkning this the other week, that there seems to be more people diagnosed, just from all the new posters on HW. It's sad that this disease may be the new 'epidemic'.
Jo
Posted 4/20/2009 10:45 AM (GMT 0)
My 2 cents.........I think with the availability of information & connecting to other CD patients via the web, we are more likely to "own up" to having CD. Of the 27 yrs since I was diagnosed, it's only been in the last 5 years that I've openly told people about it. I have to credit finding this wonderful site & group of people who made me not feel so alone and isolated.
Posted 4/20/2009 12:02 PM (GMT 0)
Well if this is the "new black," it is a decidedly un-fashionable condition to have. Anyone pretending to have this needs to walk in the shoes of those who have had multiple surgeries and can't leave the house.
Posted 4/20/2009 12:15 PM (GMT 0)
I had heard of it because of a cousin having UC and a family friend having crohns. My first GI (who retired) told me that it is normally diagnosed in the late teens to early 20's. I think that is probably true after reading to many postings on thie support site. I even see signs of it in my daugher (who is 15). I know of two others who have this disorder....one is a student at the college where I work. He goes to a natural healing doctor and currently is in remission. The other is my sons teacher, who has had it since the 70's. He has had one operation, which put him into remission until recently. He is now on endocort along with his maintance drugs.
Posted 4/20/2009 2:02 PM (GMT 0)
I wish that there was more known about what I have or people with it, just so they could do more for me, you know?
Posted 4/20/2009 2:34 PM (GMT 0)
I was starting to think the same thing lately. When I was dx'd 20 years ago, NO ONE had this DD. Now it seems every time I turn around I hear "Oh, so-and-so was dx'd with Crohn's." I'm not sure why it is, but it is kind of weird. Maybe there's more awareness than there ever was before.
Posted 4/20/2009 3:01 PM (GMT 0)
I know for some people it takes years and years to be diagnosed, but then are those like me who are quickly diagnosed with no later sign of the disease--so are some diagnosed to quickly and maybe that raises the numbers higher than they should be?
I am playing devil's advocate. yp
Posted 4/20/2009 5:14 PM (GMT 0)
...don't know...but sometimes I think that as time goes, diagnosing becomes better. Also, with things like the activia commercials, people are willing to see their doctors more about things that used to be kept quiet. Also with all the emphasis on colon cancer and screening...maybe not all were "cancer" but some sort of IBD...

I honestly think my grandmother had this DD, though in that time and her background (immigrated from Mexico in the 20's)this was something you DID NOT talk about. Nope. nothing, not ever. You just did not talk about ANY type of issues with the lower half of the abdomen. She suffered in silence but my aunts had seen it (can't imagine this disease and having only an outhouse for much of my life). She passed from complications due to stomach surgery for her stomach cancer.

I notice younger people are getting the DX too. However, when I look back, I ALWAYS had issues with an "uspset stomach". Parents are much more proactive in their childrens health than in years past. We have a lot more information at our fingertips. Yeah, I think environment has to do with it, but again, I also think docs and patients are more aware of issues...again JMHO...
Posted 4/20/2009 5:45 PM (GMT 0)
I had bowel problems since I was a baby (my mom told me) I was also born with CP (Cerebral Palsy) and we 'think' that might have something to do with my colonic inertia. Do any of you know about colonic inertia and/or small bowel inertia?

By the way, I'm new to this board, I'm usually in the ostomies one.
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