What causes Crohn's...what do YOU tell people?

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Kittikatt
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Date Joined Jul 2004
Total Posts : 422
   Posted 4/13/2009 10:07 AM (GMT -7)   
I know there isn't yet a known CAUSE for Crohn's...but if someone asks you what causes it do you just say, "researchers don't know what causes it" or do any of you throw out some of the theories like MAP, genetics, toxins, food, etc.???
 
Just curious what everyone else says. 
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


orngie
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Date Joined Feb 2009
Total Posts : 161
   Posted 4/13/2009 10:44 AM (GMT -7)   
I just say that it is an autoimmune disease that causes problems in the intestinal tract. I'm happy to elaborate if asked, but that seems to be enough to satisfy most people who are just casually curious.

MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 4/13/2009 10:44 AM (GMT -7)   
I say that "there is no known cause, but there are alot of theories from infection, enviromental, to genetics. I personally lean towards an infection, but that is just my gut instinct."
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

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LMills
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Date Joined Apr 2008
Total Posts : 1753
   Posted 4/13/2009 11:01 AM (GMT -7)   
Basically what Navy said. I'm not too keen on throwing out that it's purely genetic anyway...I do tend to lean toward some less-than-friendly microbe.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/13/2009 11:16 AM (GMT -7)   
orngie said...
I just say that it is an autoimmune disease that causes problems in the intestinal tract. I'm happy to elaborate if asked, but that seems to be enough to satisfy most people who are just casually curious.
:-) I agree with Orngie however i do throw in my thoughts i live near a large plant that is pumping out dangerous chemicals daily i think that has alot to do with cause in rate of people with crohns disease in pictou county is huge and we are all centered around this plant breathing in all that waste and we dont know what it will do to us no body will ever tell us that,thats for sure its a paper mill and you can smell it for miles you cant even hang your clothes out cause they stink you cant barby or anything the doctors will tell you differant,my story my mom and dad were going through a divorvce at the time my illness began at first i thought it was the flu but it never went away i think the stess brought it out after my mom and me moved out of my family home i got worse had my first bowel resection and started living with this disease,the doctors will tell you that stress isnt the problem i am not saying it is but it doesnt help that is for sure every crohns patient i know had a dramatic experence in there lives and than crohns showed its face.There is alot of people that are curious about how we got this is there a cure and why not we all want to know but there is a reason for everything i believe we were given this disease cause something in our bodies just wasnt right its autoimmune for sure that we do know what we dont is why us did we do something wrong not eat well enough take the right vitiams,minerals e.t.c someday we will get our answers i hope we are still here to hear that doctor tell us this why you got this and this is what we are going to do to cure this god i hope i am still here for that answer and i bet all of you are.Your Bowel Buddy Jenn. yeah
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


CheerDad
Veteran Member


Date Joined Apr 2004
Total Posts : 2284
   Posted 4/13/2009 12:26 PM (GMT -7)   
I tell them it is believed to be an autoimmune disease that can attack my entire digestive track and other soft tissue but is not known what triggers it.
We can respond to irritation with a smile instead of scowl, or by giving warm praise instead of icy indifference. By our being understanding instead of abrupt, others, in turn, may decide to hold on a little longer rather than to give way. Love, patience, and meekness can be just as contagious as rudeness and crudeness.
 
Randy
Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/
Dx'd with Crohn's at age 12. Symptoms since age 5, RLS, Depression, Anxiety, and down right feel yucky some days.
Learning to live with this Disease rather than be its victim after 36 years.


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 4/13/2009 3:18 PM (GMT -7)   
Pretty much everyone in my neck of the woods knows (or thinks they do) what Crohn's Disease is. If pressed I will say that it is a gut disorder that is probably caused by a bacterium but you need to be genetically predisposed to get it; if pushed further (I never have been) then I would explain about MAP and Johne's Disease and Koch's Postulates etc, and further mention DNA damage caused by viruses, pesticides etc as a possible reason for rising incidences of disease, not to mention lack of herd immunity and increasing quantities of MAP in water, in aerosol form, in the food chain etc.
eyes Funny... for some reason my friends never ever ask me what causes it ! smilewinkgrin

MAG102886
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Date Joined Jul 2008
Total Posts : 674
   Posted 4/13/2009 4:51 PM (GMT -7)   
I just tell them that its just something that happens, no known cause or cure yet.  I dont like to get techinal with people because every once in a while you get those "know it all" types that heard something from their bestfriends, sisters, uncles, unborn baby about crohns and they think they can tell you about it or want to argue your facts.  Short sweet and to the point is all they need. :)
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 4/13/2009 6:37 PM (GMT -7)   

I tell them it is an auto-immune problem. 

That for some reason, my immune system was triggered and it has gone hay-wire and decided it needs to attack itself.  Doctor's don't know what causes it, and while there are many different ways to treat it, every person is an individual in the way their body attacks itself, the degree of severity of their symptoms, how they react to the various meds and how the disease responds to the various meds.  Treatment is very much like a guessing-game until the patient and specialist have found the med or combination of meds to help keep it under control.  Currently there is no cure, but many cases can manage their symptoms for long periods of time.

I'm just one of the lucky "difficult cases" and we haven't found what works best for me.  Yet.


I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry......I'd much rather laugh.
2001 Dx'd with UC.  No remission.  No improvement with Remicade.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returned after resuming 6MP.  Changed maintenance med to Methotrexate (MTX) and had great results with IM injections.  Nausea and symptoms returning with oral MTX.  Switched back to IM injections and am slowly improving.


MikeB
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Date Joined Mar 2006
Total Posts : 1169
   Posted 4/14/2009 6:01 AM (GMT -7)   
I have seen people nod with understanding when I explain that it is an autoimmune diease hat causes chronic inflammation of the digestive system "sort of like arthritis in your gut." Even people who are not really familiar with IBD have a general understanding of arthritis. If pressed I will not the generally accepted theory that there are some known genetic tendencies and that they probably link up with some outside trigger like bacteria to produce a runaway inflammatory response. That seems to be plenty for the vast mahority of people, but the truth is that these days I almost always hear "Oh I have a (cousin.aunt/coworker/etc.) who has that."

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/14/2009 6:59 AM (GMT -7)   
LOL on MAG's comment! :)
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 4/15/2009 2:42 AM (GMT -7)   
sometimes ill say cause my mom gave all the good genes to the first 4 kids and used the leftovers for me! :0)
randynoguts 



     http://www.geocities.com/randynogutsweb/


fimk
Regular Member


Date Joined Apr 2009
Total Posts : 51
   Posted 4/15/2009 8:33 AM (GMT -7)   
Aliens have changed our DNA to make us ready for transport to their planet!
Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been very low doses of prednisone. Refuse to take anymore immune suppressants.


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2690
   Posted 4/15/2009 3:12 PM (GMT -7)   
I tell people that it's an autoimmune disease, that they haven't figured out the cause yet.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06, and Health Anxiety/OCD 12/08 Taking Asacol, Questran, Toprol XL, and Lexapro.


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 4/15/2009 5:13 PM (GMT 0)   
I always say bad genetics and blame my parents hehehe....
24 year old female
Diagnosed with Crohn's disease in December 2008..
Medication - Asacol, Remicade, Entocort, Cipralex and Cerazette.
My wonderful dogs :) ~ www.poodle.is ~


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/15/2009 6:43 PM (GMT -7)   
I say, my body lacks the proper protein to properly break down bacteria in my intestines. This causes a buildup of bacteria and inflamation that in turn eats through the intestinal wall and there is no known cure at this time. When I hit the part about "eating through the intestinal wall" their mouths usually drop and they can't top that with "well, my so & so has an auto-immune disease...etc...etc.. It amazes me how people are so ignorant they actually try to make a contest of sorts out of our misery with their so called rationalization of our situation! Please don't misunderstand this as anger on my part.....just calling a duck a duck.

I personally like fimk's response best!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 4/15/2009 7:10 PM (GMT -7)   

Hi, guys!  I usually go with autoimmune, and it fits in well with my autoimmune hepatitis, highgrade colon dysplasia and sarcoidosis.  (It is fun to give a history to a new doctor...they sometimes run out of patience, like a clerk with a big deli order: "ok, a pound of salami, two pounds of roast beef, american cheese,..... tongue anything else?)

Just as long as the person then doesn't start in with the "****" diet view--It is because I've eaten SOMETHING WRONG, and if I ate "right" I'd be ok...  Agrrrr.... devil

Pix


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/15/2009 7:50 PM (GMT -7)   
Pix- I like your deli metaphor....(lol)...but you forgot to top off all that sandwich meat with the onions!
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 4/15/2009 9:37 PM (GMT -7)   
I tell people that it is an auto-immune disease, they don't know what causes it, but there are theories!

When they ask me what exactly Crohn's is I tell them, "When not in remission I poo lots of blood, sometimes 15-20 times a day, and sometimes poo myself."

It may take them by surprise, but it gets the point across!!
turboemma.blogspot.com/


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 4/16/2009 4:33 AM (GMT -7)   
HA, fimk! Aliens... :)

broom, I like your explanation about the lack of proper proteins to break down bacteria...that's a good and easy thing to say. Not too medically technical and makes good sense in laymens terms.

Pix, your comment about the diet thing is the reason I asked this question to start with. I'm so TIRED of my FRIENDS asking and/or questioning me about what I ate that might have caused me to start flaring. Flares just HAPPEN for me. There's no reason; no logic...and NO food connection. It's so frustrating to try and get people to understand that YES, Crohn's is a GASTROINTESTINAL disease but that (believe it or not) there has been NO PROOF yet that any type of food CAUSES Crohn's. People want to know the CAUSE so that they don't get it, too. With Crohn's and many other auto-immune diseases, there just isn't an answer...but I've found that people without Crohn's still come to their own conclusions that it must have to do with some food/drink we put through our GI tract.
Diagnosed in October, 2004 at age 32.
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 4/16/2009 5:19 AM (GMT -7)   
yeah Well, I've got to be living proof of what you say, Kittikat. I basically manage my illness just by what I eat, or just as often don't eat, plus carefully monitored amounts of exercise so that I don't get too tired. I'm not on any meidcations at all. And still there are days that my guts go wrong, and there is nothing I can see that triggers it, I don't know when it will happen and I never know just when it will stop again, it is down to my body to fight it off. eyes Drives me bananas with frustration.
Saying the wrong food causes Crohn's is like saying the burning barn being wooden caused the fire. Yes, it might not help, but...! shakehead

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 4/16/2009 7:40 AM (GMT -7)   
I just say my guardian angel turned out to be a slacker. When he was suppose to be protecting me he was off having a cup of coffee and a cigarette or flirting with the lady angels. When I croak I'm going to kick his halo off.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 4/16/2009 8:16 AM (GMT -7)   
smilewinkgrin  Sniper said...
I just say my guardian angel turned out to be a slacker. When he was suppose to be protecting me he was off having a cup of coffee and a cigarette or flirting with the lady angels. When I croak I'm going to kick his halo off.

Hi Sniper great name for starters and your thoughts on the cause of Crohns is priceless really i love that,i think we are only dished what we can handle and i think all the trash that crohns throws at us we are pretty stong after all don't you? Do you really believe in guardian angels? I so do i also am a huge collector of the sarahs angels and when ever one of my loved ones gets sick that is the gift i always give them an angel. My dad had a brain anurzum and it ruptured he almost died i sat by his beside for a month and ahalf he never woke i brought him an angel and placed it on his pillow beside his head when he finally woke he didn't know me or who he was were he was or even his own wife,it took a long time for him to recover and he was finally well enough to be placed in a step down unit he was out of ICU i was so happy finally one day he was eatting lunch one day and grabbed a glass of milk and i said dad you hate milk and he looked at me confused and said do i Jenn that was the first time he said my name or even knew me in 2 months it was the happest day of my life i know it sounds crazy but i know that the angels were watching over my dad and they brought him back to me,sure the doctors did there thing but in the end dads life was up to god from there and the angels and they gave me back my dad. He has come a long way since than it was 6 years ago now he lost all of his long term memory and some of his short term memory but i got him back and that is all that matters it hurts a bite when we talk about when we were kids and i look at my dad and its like he is learning this for the first time in his life it breaks my heart but the doctor said to tell him things about his past happy things and see if he can remember them when asked in 5 minutes he has no idea,so i don't follow the doctors orders anymore now cause i know how much it hurts him. So Snipper thanks for that you reallly made my day today your a good person. Your Friend Jenn yeah
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 4/16/2009 10:27 AM (GMT -7)   
Jen, yes I'm a believer. Too many close calls for me not to believe. Glad you got you dad back and I am sure he loves you just as much even if he does not recall you whole childhood. Glad I could bring you a smile...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/16/2009 10:32 PM (GMT -7)   
This isn't what I tell people but I just thought it would be some good info regarding the possible cause according to an IBD researcher/GI....

Dr. Richard N. Fedorak, MD
Professor and Director, Division of Gastroenterology

--------------------------------------------------------------------------------


Profile



Inflammatory bowel disease is a result of an unchecked intestinal inflammatory response. While the exact etiology and pathogenesis of IBD remains unclear, initiation of the inflammatory response is likely caused by luminal factors, very likely bacteria or bacterial products, serving as an activating antigen. By sieving through a permeable epithelial barrier this initiating factor in turn leads to an increased exposure of the mucosal immune system to luminal antigens and toxins. In the genetically susceptible individual, this process results in an inappropriate and perpetuating mucosal immune response with ensuing microscopic injury. My laboratory is examining the role of bacteria and bacterial products as the activating antigen in a number of experimental models of inflammatory bowel disease. Furthermore, we are characterizing the mucosal immune response to these antigens and identifying those antigens for which there is loss of tolerance. Finally, in conjunction with the basic laboratory investigations I have a large clinical investigative section examining novel therapeutic agents in the treatment of human inflammatory bowel disease.


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

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