Is it just me or...

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aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 1/31/2009 9:20 PM (GMT -7)   
Does it seem that more and more people seem to know someone that has Crohns? It's too bad we never get real numbers on the disease and the growth rate.
SCD since 01, remission since 01, occasional Arby's breaks :)


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 1/31/2009 9:24 PM (GMT -7)   
I don't know anyone in person very well with Crohn's(a few 'friends' here and there), but plenty of my friends have had three or four of their friends diagnosed with it. I know an increasing number of people diagnosed with a range of other autoimmune disorders though. I think it has a lot to do with industrialized, high stress environments, with unhealthy food as the most accessible, and an increase in population density. There are plenty of theories as to the effects in biology, sociology, environmental sociology, and so on, of the kind of environment in which we live. Different regions have different diseases and disorders they deal with.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 1/31/2009 9:24 PM (GMT -7)   
I know tons of people at my work that have it (600 employees) but none that are even close to my age.  It would be nice having someone close in age to hang out with that has Crohns too

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Humira (bi-weekly)
 

patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 1/31/2009 10:08 PM (GMT -7)   
I can't find anyone my age either, but it does seem like I'm hearing more and more people being diagnosed... both with crohn's and like Mills said - with other freaky autoimmune diseases. Certainly is making ME rethink certain things.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 1/31/2009 11:17 PM (GMT -7)   
Just think about how many are out there that havn't been DX yet ( a lot of people live in denial too ).

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/1/2009 7:08 AM (GMT -7)   
It seems to me more and more folks are being diagnosed now. I have a co-worker with Crohns, my manager's best friend has Crohns, his assistant's cousin just got diagnosed, and one of the advisors I work with her sister just got diagnosed with UC.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 2/1/2009 9:37 AM (GMT -7)   
Yeah I'm 25 , I kind of hate going in to the GI or especially the VA hospital and having everyone look at me crazy because I'm under 50 :P It would be nice to have someone around who's my age and gets it. We should find out where everyone lives and start hanging out lol
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 2/1/2009 2:40 PM (GMT -7)   
Unfortunately, I know all too many people who have an IBD, either directly or through friends. On my Husbands softball team alone, 1 player has CD, one has UC, and 2 of us wives have CD, that is in a group of less than 25 or 30 people. My husband is the oldest player, most of the players are in their 20's. I know that more and more older folks are getting DXed, but I was only 13 when I started showing signs and the 3 people I just mentioned are all in their 20's, so I'm not so sure that CD is discriminating.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 2/1/2009 4:23 PM (GMT -7)   
CD is definitely not discriminating when it comes to age.... I think maybe part of it is that it's harder to talk about when you're still young and single and such. I know I kept almost everything on the "down-low" until I got married, and now I'm not so worried about scaring people away (especially a potential mate). Might sound kinda screwy, but I think I'm probably not the only one in or that has gone through that mindset.

I hate the "Medi-CARE" vs "Medic'AID" clarifications I have to give EVERY ONE who looks at my insurance information. They all assume that it SHOULD say medicaid because I'm not even 30 yet, but NO. I have MEDICARE. THE OLD PEOPLE ONE. YES, that's what they call it. Thanks guys. I'm 27 and I have the "OLD PEOPLE" government insurance. Pah. Oh well. I'm happy to have what insurance I have! :-)
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds
'cade stopped working in '08 and I've been scrambling ever since.
Noticing a real difference with a Gluten-Free diet.
Currently on:
Probiotics, Digestive Enzymes, and Prednisone
Soon to Start:
Cimzia, acacia fiber supplement, and L-Glutamine


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 2/1/2009 7:22 PM (GMT -7)   
At my work two regular customers have CD and 1 girl I work with does. We all seem to have different degrees of the disease, 1 customer has a colostomy bag, the other customer has had several resections and remains unmedicated and the mid 20year old I work with thinks a herbalist has cured her and takes nothing for it!
Im the only medicated one amongst them.
Jo

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/1/2009 11:25 PM (GMT -7)   
Growing up, my dad was the only person I knew that had Crohn's. It was a mysterious scary disease to me, and he almost died when I was 4 Luckily, I was not aware things were that dire. I remember spending most of the summer with my grandparents, and visiting my dad at the hospital one day for him to say "goodbye" should he not make it through surgery. He made it, and I remained clueless for awhile longer about Crohn's being such a dreadful disease.

I was diagnosed shortly before my 21st birthday (although I'd been sick since I was 19). I kept it to myself that I had Crohn's, and didn't even tell my new college friends. The ruse was up after a couple years and a big flair. It wasn't a whole lot later then there was a trickle of people who told me they knew someone with Crohn's.

Nowadays, it seems everyone knows a Crohnnie. At my local dog park, I know 3 other women that have it. All of them are in their 50's and have had it a long time.

I've read a theory that the huge increase in autoimmune diseases could be because the last two generations of mom's have bottle fed their babies, were heavily vaccinated, ate a high processed food diet, and were exposed to more environmental toxins. Once generation three came along, they paid the price. If that's the case, then it would seem like a community such as the Amish would not have the huge influx of autoimmune problems. If someone hasn't already done a study on this, they should!

MsRockonBelly21
Regular Member


Date Joined Dec 2008
Total Posts : 42
   Posted 2/2/2009 12:45 AM (GMT -7)   
The only people I know that have crohn's are you fine people on this website. I just noticed crohn's is getting more attention. Like you MAG102886 I would love to have someone my age to hangout or date that has crohn's. Tonight I found a profile on myspace that caters to people with crohn's and uc(waiting to be friend). I hoping to find someone in my area that has it.
Don't judge a book by its movie.
 
In the past I have taken Asacol, 6mp, Prednisone(3x),  Remicade, Flagyl, Cipro, Phenergan, Colazal(think there was others).                       
 
I am on Metoprolol 50 mg for high blood pressure and heart beating too fast. On Citalopram 20 mg for my anxiety and depression. Started taking fish oil capsule 1200 mg for my high cholesterol. On Calcium 600 mg+ D 400 i.u.  pills. On Remicade 1,045 mg 
 
Diagnosed at age 14 in 2001, first started sick getting at age 13, Sept 2000. I am now 21


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 2/2/2009 8:03 AM (GMT -7)   
Many moons ago, when this forum was young and we all knew each other by name and circumstance... rolleyes ooh, about three years ago now.... wink this topic of how common CD is was thoroughly researched, and it was most illuminating.
Bear in mind that I suffer from bad brain fog, so my figures here may not be correct.
CD was first "discovered" in about 1938 I think it was, and written up in a paper by three doctors. Dr Crohn was the first author's name, so it was called Crohn's Disease - could've been Hasegawoto's Disease or something like that, one of the other docs had a name like that. Phew ! smilewinkgrin
Originally, the average age of diagnosis was 33, and the spread of ages was relatively limited. There were no youngsters in their teens at all, and very few if any old people. The incidence was extremely low. Crohns was seen as similar to tuberculosus, but restricted to the gut.
Fast forward to the late nineties/early twenty first, and the scene is dramatically different.
We now know of Crohn's related problems with the skin, kidneys, gall bladder, lungs, eyes, joints....you name it. Very like tuberculosis, and adding weight to the idea that it is caused by a member of that bacterial family. But many if not virtually all doctors are pretty much ignorant of this; in the UK they totally ignore these symptoms when making a diagnosis. (I tend to have extra-intestinal symptoms, especially when I have a flare; these are dismissed, and my CD diagnosis is considered doubtful. Only GI findings are used.)
Scottish/Irish ancestry is now often considered a "sine qua non" (necessity) for having Crohn's Disease, the genes having originally come from a particular part of Ireland with the Celts.
There are infants shocked being diagnosed with Crohns, children and teenagers are now an accepted and regularly diagnosed part of the CD population, and old people who have had it all their lives, as well as those who have just developed problems, are now being diagnosed. If I remember correctly, the average age of diagnosis is now in the low 20s. Incidence, the last figure I heard was 600 000 in the USA alone, which would make it...well, you do the math, I wasn't kidding about the brain fog !
Canada has if anything an even higher ratio of CD diagnoses, probably due to the very organised GI system they have; they actually have support groups for CD sufferers built into their therapy, can you imagine ? You get diagnosed, and you immediately get contacted by a support group, and get help with financial, work and school related issues ! eyes
Scotland, in particular the North East (that's me) and Tel Aviv in Israel, are the world capitals for Crohns Disease. This is reckoned to be because the genes that predispose towards it are particularly prevalent there. In my case, I must have Irish blood, that's where the Scots get them; in Israel, it is the Ashken*zi sect who have a particularly high incidence, no doubt due to religious tenets preventing dilution of genes. Kind of like the opposite of the Amish idea !
There's a theory that MAP, or something like it, is present in the soil of both Israel and North East Scotland, and that's why we have so many cases. But the more I read about genes, and epigenetic changes (where inert genes get switched on by environmental triggers like infection or chemicals like pesticides, then the switched on genes get passed down to following generations) and the more I find out about the chemicals we are surrounded by, the more I am convinced that it is very much started by a whole host of causes, some causing one permanent change and then others causing the actual real Crohns. Rather like the two step process that causes cancer.
I'm kind of lucky in Aberdeen. If I say to anyone local here, "I have Crohns", they always know what it is, usually because they already know someone who has it. Maybe a friend of a friend, but it is endemic here. But support is pretty thin on the ground, and the support groups are more about raising funds for research as far as I can see. I don't know any Crohnies "in the flesh". shakehead
The Amish are extensively studied - I sometimes wonder how they manage to live, they must have so much blood drawn off ! - but I don't know of any research done on them regarding CD. As they mainly are descended from Germanic or Scandinavian stock, you wouldn't ecpect them to have the genes associated with CD and UC.
shocked Oops, sorry guys, did I just write an essay ? tongue

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 2/2/2009 8:42 AM (GMT -7)   
I read online somewhere that close to 68% of patients who go to their general practioner complaining of frequent diarrhea are automatically given a diagnosis of IBS based solely on the complaining symptoms. No tests are done because, according to this that I read, many doctors want to get patients in and out fast and many also don't have a CLUE about Crohn's Disease so their brain doesn't even consider it. Some doctors/nurses have never even heard of CD.

That's what happened to me...I was originally diagnosed with IBS, too...by my uncle, a doctor specializing in pain managment for over 40 years. It took me saying, "my diarrhea is waking me up every hour of the night" for him to get me an appointment with a GI. I assumed my uncle was right about the IBS so I just dealt with the symptoms for several years.
Diagnosed in October, 2004 at age 32.
36/F/SC
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills, Chromium Picolinate
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 2/2/2009 10:25 AM (GMT -7)   
I was also diagnosed with IBS from the first doctor I went to.

snohare-thank you for posting that :) It was very interesting. I have Scottish ancestry and my ancestors there did something naughty so got kicked out to Ireland(sometime after Queen Mary Stuart which is where our family's book traces blood to).
Hm...I wonder about certain environmental factors like pesticides too though...nine people were tested at the Mount Sinai hospital for chemicals that don't naturally occur in the body just as a 'let's see what we find' study and 53 chemicals related to gastrointestinal problems were found to be in them. Albeit, in trace amounts, but research has shown that even those small amounts can make a huge difference.

Didn't mean to go off there.
I agree with everyone else about finding more in the flesh to relate with.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 15 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, multivitamin, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting a diet without refined sugars, high fat content, bleached or bromated flour, most dairy, red meat, and avoiding anything spicy like the plague. Also refuse to eat anything with trans fat or high fructose/corn syrup.
"He who has a why to live for can bear with almost any how."


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 2/2/2009 12:29 PM (GMT -7)   
My first doctor diagnosed me with depression and said I needed counseling. A couple years later, I went to an allergist, thinking my gut problems could be allergy related, and he diagnosed me as anorexic and said my parents should institutionalize me rolleyes (he based his diagnosis on the fact that I had dropped to 85 pounds). Not long after that I saw a good doctor who actually listened to me, and he got me into a GI the very next day. One colonscopy later and I was diagnosed with Crohn's. My mom wrote a nasty gram to each of the other two inept doctors lambasting them for their lousy diagnostic skills. I wasted 2 years of my life suffering because they didn't take my symptoms seriously mad.

MsRockonBelly21
Regular Member


Date Joined Dec 2008
Total Posts : 42
   Posted 2/2/2009 3:22 PM (GMT -7)   
I had flu like symptoms. I was 13 when it all started. I went from 168 to 123 in two months. I slept on my knees because it hurted to lay or sit down. I was throwing up water because it burned like acid.The first doctor I went gave me 3 meds to help with pain, nausea, and diarhea. He told my mom to take me to the ER so I can find a doctor if I didn't get better. The doctors did a colonscopy, lots of blood tests, x-rays, ultrasounds, catscans.  I was diagnosed with an ucler, then Inflammtory Bowel Syndrome, then Crohn's. It started in Oct '00, went to first doc in Jan '01. I went to ER in April '01 and had first colonscopy in June '01. I was fully diagnosed in August or September '01(age 14). For some reason I just remember in the 4th grade I went to the ER because I was constipated. It is hard for me to stay on topic smilewinkgrin .
Don't judge a book by its movie.
 
In the past I have taken Asacol, 6mp, Prednisone(3x),  Remicade, Flagyl, Cipro, Phenergan, Colazal(think there was others).                       
 
I am on Metoprolol 50 mg for high blood pressure and heart beating too fast. On Citalopram 20 mg for my anxiety and depression. Started taking fish oil capsule 1200 mg for my high cholesterol. On Calcium 600 mg+ D 400 i.u.  pills. On Remicade 1,045 mg 
 
Diagnosed at age 14 in 2001, first started sick getting at age 13, Sept 2000. I am now 21


heatmiser
Veteran Member


Date Joined May 2003
Total Posts : 1671
   Posted 2/2/2009 5:08 PM (GMT -7)   
I hate for anyone to suffer with this disease, but at the same time I am glad that there are enough of us who can relate to each other. It would be so lonely otherwise.
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