What really causes Crohns/colitis anyways?

[supergurl]

what really causes Crohns/colitis anyways?

there are lots of competing ideas out there. genetics, diet, the immune system attacking itself or a suppressed immune system. some people think they are born with it and other develop it. what do you think? Dr.s cant even seem to agree

 

[DanSJVDavis]

It's still sort of a mystery; however, they have found key points in the genetic code that plays a major factor in whether you get Crohn's or not. The CCFA website has some news on that stuff. I don't think it's as simple as a diet issue and the vector does seem to coincide with heredity. The other family members may not have Crohn's, but checking might reveal other digestive disorders amongst other family members. And having that possibility of having Crohn's doesn't necessarily mean they'll get it in their lifetime or they may get it later in life. Much like other genetic problems it could very well skip a generation or two

And Crohn's could have a completely different set of circumstances as, say UC or IBS and researchers would do well to test each one for its own reasons and not make the mistake of lumping them all together when researching them just because they all affect the digestive system.

But that be just my own thoughts on the matter and have no real basis in fact. Just conclusions based on what I've read thus far while trying to learn whatever I can about my illness.

 

[Jeff Inman]

My family has a history of collagen/rhuematoid dieases. My sister went to the Mayo Clinic for Bechet's Disease, which cause severe apthous ulcers in the mouth...sort of like Crohn's in the mouth! My aunts have Grave's Disease, which affects the thyroid, and Lupus (which is treated like Chrohns, with steroids). Based on my family history, I believe there is a genetic link. I tried Remicade (anti-body) for 1-year and went into remission for the next year without any treatments...it finally caught up with me over the holidays and now I'm back on Remicade for another year....I think stress and diet are factors whch can work together to bring about a flair-up. I think foods which tend to cause diverticulitis should be avoided: (nuts, seeds, popcorn). I especially think it is important to drink plenty of water to aid digestion and prevent kidney stones. I sometimes notice cramps from tomato sauce and acid drinks (orange juice & grape juice). If I drink it at all, I buy low-acid juice. I drink plenty of sweet acidophilus milk...for good digestive bacteria...but not so much as to cause excessive gas...I currently believe drinking plenty of WATER and having Strong FAITH in GOD are our best bets for relief!

 

[ruthymg]

Its definately true that different proffessionals have different theories and what may be shown on english sites is also different on other sites around the world. It would be nice to have one major resource centre that is used and accessed wordwide with all the info we need to know rather than thousands of sites with conflicting info on. There are so many sites that are out of date too, and hardly any of them explain how complex a disease like crohns is, they also just say it can be managed with medication which is also arguable. Its a well known fact by crohns and colitis sufferers that noone actually seems to know how painful these illnesses are unless you actually have them yourself and thats frustrating in itself.
Research has been going on into Ibd's since the early 1900's and yet we are no nearer to knowing the truth but I do believe that there is some truth in a link with cows milk. Unfortunately if this was proved this would be a catastrophe for dairies and who knows how many people may try to sue, and if this was the case would governments be held accountable? I find it frustrating that we are so close to finding a cure for cancer one of the biggest killers worldwide, but yet here we are over 100 years later and no nearer to the truth.


Ruth

 

[mikeyarmo]

The main areas people usually look to (but not all people/medical professionals agree with) for triggering the diesease are: enviornmental (including location, what you are in contact with in the place you live, lack of germs in developed world, stress level,etc.), heredity/genetic,diet (the one that has the most disagreement, especially between medical professionals and those practising naturopathy), and many others. Some people say that IBD sufferers even have similar personal traits or characteristics (like not being open with others emotionally and keeping things bottled up).

People have found success controlling their disease with medication, others natural remedies/diet changes, others through doing absolutely nothing and others still continue to search for what works for them. So I recommend that you do your own research and determine what works with you. Making changes in ones diet is usually not too hard, and as long as the changes do not deprive your body of the necessary vitamins and nutrients I do not see any problems with doing that (especially if it leads to making healthier food choices). Stress reduction is (at least among many sufferers) seen to reduce the # of flairs of the disease, so some easy ways to help with this are exercise regularly (even if it just means walking), getting good amounts of sleep and monitoring yourself to ensure you are not overly stressing and worrying about things (especially things you can not control!).

 

[Jeff Inman]

The main areas people usually look to (but not all people/medical professionals agree with) for triggering the diesease are: enviornmental (including location, what you are in contact with in the place you live, lack of germs in developed world, stress level,etc.), heredity/genetic,diet (the one that has the most disagreement, especially between medical professionals and those practising naturopathy), and many others. Some people say that IBD sufferers even have similar personal traits or characteristics (like not being open with others emotionally and keeping things bottled up).

People have found success controlling their disease with medication, others natural remedies/diet changes, others through doing absolutely nothing and others still continue to search for what works for them. So I recommend that you do your own research and determine what works with you. Making changes in ones diet is usually not too hard, and as long as the changes do not deprive your body of the necessary vitamins and nutrients I do not see any problems with doing that (especially if it leads to making healthier food choices). Stress reduction is (at least among many sufferers) seen to reduce the # of flairs of the disease, so some easy ways to help with this are exercise regularly (even if it just means walking), getting good amounts of sleep and monitoring yourself to ensure you are not overly stressing and worrying about things (especially things you can not control!).

Thanks for the responses, Mike & Ruth. I'm glad you mentioned the sleep/stresss factor. I see a direct correlaton between stress/sleep and my flair-ups as well. During my well-time I generally sleep more (later)....and minimize my worries.

Just like the disease itself, life is complicated!!! I think it is easy for one element or factor in your life...like stress or lack of sleep, to easily cause other elements like diet and excercise to suffer as well (a sign of far deeper "issues" in one's life.)The problem is these events happen slowly and we get "lulled" into an un-healthy state before we realize it. Some might call it the "Boiling Frog" Syndrome. (A frog is insensitive to slow, gradual changes in its temperature. If you throw one in hot water it will jump out immediately, but if you slowly warm the water...it will just sit there until it is boiled alive! (See "The Fifth Discpline", by Peter Senge)). My game plan is to be more aware of subtle changes in my stress level, lifestyle, and habits.
It will take a continuous, vigilant effort to stay on top of it, LOL! Thanks Again & Good Luck!!! -Jeff

 

[pb4]

Maybe this link from the CCFC will help in your quest for understanding this DD...

http://www.ccfc.ca/English/research/todaysresearch.html

Many genes have been identified that are directly related to crohns disease which are different from UC, which makes sence since they are 2 seperate diseases with very similar symptoms...the thing is it's not just a matter of being predisposed to IBD it's also having it triggered and this is where researchers are having the hardest time...they have finally found that smoking (including second-hand smoke) is one known trigger for crohns, yet for UC the carbon monoxide in the nicotine can be quite a benefit in relieving symptoms, odd but true), stress has also been identified with UC (I'm sure it's linked to CD too but from everything I've read so far it hasn't been stated like it has been in regards to UC).

Also, according to Dr.Kevin Rioux, Genetic influences have long been suspected to play a role in IBD based on the following clues...
1) A significant % (~20%) of IBD patients have a relative that also suffers from IBD (either UC or CD).
2) Certain ethnic groups are at substantially higer risk for IBD than the general population.
3) There are extream cases of familial IBD where nearly every family member suffers from the condition.
4) In studies of identical twins, if one twin has crohns there is a 40-60% chance that the other twin will also have the disease (it's just a matter of it being triggered).

If you have IBD it has been estimated that your offspring will have a 10- to 15- fold increased risk of developing IBD compared with those who do not have a parent with IBD.

In the past few years, advanced genetic techniques have allowed scientists to discover at least 9 different gene clusters that contribute to the development of IBD and define the severity and behavior of the disease over time. Some of these genes encode factors involved in recognition and defense against bacteria. Mutations in immune response genes may adversely affect how the immune system reacts to harmless bacteria and this probably contributes to the development of IBD...

I guess that's why researchers are looking hard at probiotics and prebiotics and there benefits to IBD (IBS as well apparently)...it's known that IBDers are prone to bacterial overgrowth.

The good news is that they are learning more and more, the bad news is it's taking too darn long...I've had this thing non-stop for 16 yrs with no full remission...the only thing that keeps me going is the hopes they will soon figure it all out and cure us all. BTW, I have crohns since my early 20's and my mom has UC which wan't triggered (she didn't get sick with it) until she was in her mid 60's...so who's to say that many, if not all of us, have many family members that also have IBD but it just has not been triggered for them yet, our bodies are very complex and so is IBD, what triggers it for one may not necessarily trigger it for all (especially family members growing up on the same diet/lifestyle and such).

 

[TammySue62]

hi
Myself I have had CD since I was 16 yrs old too like pb4 but,did not get DX untill I was 17. Back then( almost 3 decades ago) It was very hard to DX what I had. In the mean time I was shrinking away down to 70 lbs. vomiting i couldn't even walk I was so weak. This is wierd I can remember this hole ordeal just like it was yesterday.
Sitting in the Drs. waiting for the verdict. You have an incurable disease called Crohn's Disease.Don't no how you get it or how to cure it .My mouth just dropped.I thought my life had ended when in reality(at 16) it should of been the begining of a teenage life.So off we go to 2 or 3 other GI specialists,they all told me the same news.You have CD.Back then not many prople new or understood what CD was,so it was hard to find answers. One Dr. told me it was because of the milk. Because back then I did drink alot of milk. Then he said smoking makes it worse. He also said that I could not get pregnant.I did 17 yrs ago had a beautiful daughter just proved that therory wrong.Then he asked me if any one in the family had stomache or intestinal problems.I said no.Mean while just befor that he said that it wasn't hereditary.


To this day I"m still confused is it or is it not hereditary?
Does drinking milk contribuate to CD?
Is it in your genes?
Does stress have anything to do with it? Because back when I was 16 stress was not a factor with me.My parents were well off,so I didn't reall have to worry about getting new clothes or trying to buy a car. All my parents wanted me to do was go to colledge. So in my case stress was not a factor.
I also can remember crying to my sister because I was loosing so much hair and didn't understand WHY
After I found out that I had CD everone treated me different even my parents.I even lost some school friends .
My life (at the time) was over I thought for a couple of years.Then I pulled myself together and said This CD will not ruin my life.So I began to try and live again
Tring to deal with all the unexplained situations that have happened to me.
Some of you people know.
The swollen faces, I even had water in the knee,even though I never banged my knee on anything,The hot flashes.then passing out cold for a few seconds then imediately running to the washrooms and so on... etc....

Back to the question sorry I got side tracked.
To this day I sometimes have to tell my Dr. what to do when I'm in a flare. He says well I have tried every possible meds for you. What do you suggest that we do .Most of the time bed rest (for me works) or if a new drug comes out he will ask me if I want to try it.
Then it gets to the point where he will say I don't no what else to do for you except surgery.It seems to me their way out is to cut me up. Well no not this time soon as I had the first surgery (so many cm of my sm. and lg. intestines were taking out)the disease moved or showed up right where they joined them back to gether.
Now with these fistulas they want to do surgery again either setons or the ileostomy.

Thats my biggest beef when all else fails surgery.
Is that all these Drs. have on there mind is surgery?
Ruth has some interesting comments.I totally agree with her.
To this day the( or most in my opinion)Drs. specialists sciencentist in this fields still do not have a break through or even close on why people have IBD.
One would think after all these years that they could come up with some logical reason.
My point being is they today are no closer to finding answers then they were back in 1932 when a DR Burrill Crohn discovered it .

pb4 I will take this imformation to my Dr. and ask him about Dr. Remo Pannacioni

 

[Dekar]

my opinion is a genetic weakness that allows MAP from milk to mess with you + a weak immune system at the time eithe rhaving to do with depression or some other factor = crohns manifests.

 

[Jeff D.]

I believe that it is a genetic issue but to get Crohn's you cannot just get it by having the genetic link. I think you also need to have other things along with it such as a poor diet, stress, to much or lack of sleep, depression and anxiety, or any other such body stressors.

 

[old hat]

The bottom line is that no one really knows. There are several theories but none of them have been proven.

http://www.medicinenet.com/crohns_disease/article.htm

What causes Crohn's disease?

The cause of Crohn's disease is unknown. Some scientists suspect that infection by certain bacteria, such as strains of mycobacterium, may be the cause of Crohn's disease. To date, however, there has been no convincing evidence that the disease is caused by infection. Crohn's disease is not contagious. Although diet may affect the symptoms in patients with Crohn's disease, it is unlikely that diet is responsible for the disease.

Activation of the immune system in the intestines appears to be important in IBD. The immune system is composed of immune cells and the proteins that these immune cells produce. Normally, these cells and proteins defend the body against harmful bacteria, viruses, fungi, and other foreign invaders. Activation of the immune system causes inflammation within the tissues where the activation occurs. (Inflammation is an important mechanism of defense used by the immune system.)

Normally, the immune system is activated only when the body is exposed to harmful invaders. In patients with IBD, however, the immune system is abnormally and chronically activated in the absence of any known invader. The continued abnormal activation of the immune system results in chronic inflammation and ulceration. The susceptibility to abnormal activation of the immune system is genetically inherited. Thus, first degree relatives (brothers, sisters, children, and parents) of patients with IBD are more likely to develop these diseases. Recently a gene called NOD2 has been identified as being associated with Crohn's disease. This gene is important in determining how the body responds to some bacterial products. Individuals with mutations in this gene are more susceptible to developing Crohn's disease.

 

[D Bergy]

I do believe there is a genetic factor that predisposes people to Crohns disease or other related diseases.

MAP may also be a trigger as one study I read made a pretty good case for the diary products, Mycobacterium connection based on the fact that people from India rarely get Crohns. He thought it was because they boiled their milk. One factor he may have overlooked was that they eats lots of Curry in India also. Curry and many Indian foods are loaded with Turmeric which is antibacterial and a natural anti inflammatory. There also has been at least one study showing that it does help Crohns symptoms. That is the angle I am pursuing.

Stress is certainly a factor in triggering the activity but probably just weakens the immune system temporarily. My guess anyway.

Yet another study points to refrigerated meats containing bacteria that may help bring on Crohns. This was my number two of most likely triggers.

There are no less than six theories I have seen. All are possible, none proven.

D Bergy

 

[Jeff D.]

I have a quick question for you guys. If you can remember who was taking advil before getting your first flare. When I started getting sick I was taking between 5 and 7 advil a day and thats when I started getting diahrea then I took it again for a while and got constipation and was hit with you have Crohn's after that. So thats my question. I will put a poll up in a little while but I don't have time now.

 

[D Bergy]

I have never used Advil or much of any kind of pain reliever other than occasional Aspirin. I certainly think that any medication that is an irritant to the intestinal tract could trigger a flare up.

D Bergy

 

[Jeff D.]

Yeah thats what I wonder. I mean I was on very high doses and normal people I know get and irritated stomach. I was taking advil for more than two months straight everyday at about 5 to 7 a day. So I think that it could have triggered my main flare.

 

[old hat]

Yeah thats what I wonder. I mean I was on very high doses and normal people I know get and irritated stomach. I was taking advil for more than two months straight everyday at about 5 to 7 a day. So I think that it could have triggered my main flare.

It is pretty well established that non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Advil, Motrin etc) can cause flare-ups in people with IBD.

http://ibdcrohns.about.com/cs/ibdfaqs/a/nsaidsibd.htm

People with inflammatory bowel disease (IBD) also experience aches and pains. Many experience pain on a daily basis due to related conditions such as arthritis, or drug side effects such as headaches. However, many gastroenterologists recommend that their IBD patients stay away from NSAIDs. The reason is because NSAIDs are known to have an adverse effect on Crohn's disease and ulcerative colitis.

 

[D Bergy]

I am stepping out into the alternative, unapproved medicine arena now so bear with me.

I know many have arthritis with this disease as well as Lyme disease. I personally have way more experience with Lyme as my wife has it. But, she also had very painful arthritis associated with Lyme. We have resolved 90% of it using her alternative, experimental treatment for Lyme disease. We also have resolved 100% of her other Lyme symptoms. This involves using frequency treatments using a Rife machine. I am not going to go into all of the details of this because I would be here for a week. But, for the skeptical, like myself, I offer the following Placebo controlled Double Blind study proving the effectiveness of this form of treatment for Arthritis.

Anyone who suffers with Arthritis should seriously consider this method of treatment and should spend some time reading the study as it could change your life. That is not an overstatement either. The links to the study are in the upper left of the page this link goes to.

http://www.rife.de/preface.html

D Bergy

 

[old hat]

Lyme Disease: Questionable Diagnosis and Treatment
http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html

The pseudoscience of radionics
http://skepdic.com/radionics.html

 

[Dekar]

Jeff, i've been on tylenol (never advil) once in my life ever but it was when i had a 103 degree fever when i was a kid . i don't think it had any cause in the disease though.

 

[Dekar]

only thing i know for SURE is that i used to drink tons and tons of milk everyday

 

[old hat]

Jeff, i've been on tylenol (never advil) once in my life ever but it was when i had a 103 degree fever when i was a kid . i don't think it had any cause in the disease though.

NSAIDs don't cause IBD but they can aggravate it. Acetaminophen (the active ingredient in Tylenol) is a different type of medication anyway. It isn't an NSAID.

 

[D Bergy]

Acetaminophen has no connection to Crohns that I am aware of, but it is the leading cause of acute liver failure in the U.S. I would be careful using it long term or if you are on other liver stressing medications. This does not happen often, but certainly is something to be aware of.

Alcohol and Acetaminophen are an especially bad combination.

D Bergy

 

[D Bergy]

I will pit a double blind study against the Quack watch site any day.

Steven Barrett who runs or at least did run the site has sued no less than 40 people that criticized his severely skewed site. He has yet to win a case.

During the course of his examination, Barrett also had to concede his ties to the AMA, Federal Trade Commission (FTC) and Food & Drug Administration (FDA).

http://www.canlyme.com/quackwatch.html

There also is a competing site which he also sued and lost.

http://www.quackpotwatch.org/

Abram's was a quack, at least most of his claims were false. Rife has no connection to Abram's as he did verify his findings under his Universal Microscope which is patented in the U.S. He has many pictures and even videos of various bacteria and viruses observed under his microscope. This microscope has not yet been completely duplicated to this day, so he was at least 60 years ahead of his time.

http://users.navi.net/~rsc/seidel.htm#rife

I only offer this information because my personal experience has convinced me without a doubt that it works for Lyme and Arthritis. There are thousands using it to greatly improve symptoms of Lyme disease at this time. The Australian study shows the effectiveness in the case of Arthritis. So that makes Quack Watch's description false.

If I had a particular pathogen and a frequency to use it on Crohns I would also use it for that in hopes that it would resolve this disease. Unfortunately, there is no consensus on this either, so I will just have to keep searching.

It is up to each individual what they choose to believe. Do what you are comfortable with.

D Bergy

 

[old hat]

I found a link to a newpaper article. I can't seem to find where they indicate which peer reviewed journal this study was published in. Maybe you could point me to that.

The reason why Rife's microscope hasn't been duplicated is that it never did what he claimed in the first place.
http://www.acahf.org.au/articles/ausdoc0304.htm

Personal experience and anecdotal evidence is a poor guide for the effectiveness of any treatment. That is why peer reviewed studies are so important. If you can point me to a study published in a peer reviewed journal that shows these devices to be an effective therapty for the treatment of anything, I will be glad to consider it.

No peer review. Results that can't be reproduced. I am, to say the least, extremely dubious.

 

[D Bergy]

I never claimed the article was published in a peer reviewed journal. I only said it was a double blind study.

You do not have to believe anything I am posting here. I am only giving my experience and the experience of others who have tested and actually used the device. I test different treatments to see if they work.

Personal experience is the only kind I can confirm. I do not believe everything I read. I do not debate "how many teeth are in a horses mouth". I count them.

Nobody who used the Rife microscope at the time debated the resolution and they were scientists, doctors and other people familiar with microscopes. It was tested at that time and there was no debate about it then.

The "Abbe limit" which is the law of physics thought to apply to maximum magnification of microscopes that you referenced has already been broken by several light microscopes.

The Grayfeild company's microscopes have a magnifications beyond the Abbe limit.
http://www.grayfieldoptical.com/resolution.html

Again, I am not here to debate, I am just reporting what my experience and the experience of others has been using this experimental treatment. You are free to believe what you wish. I have nothing to gain or lose no matter what treatment anybody uses.

D Bergy