Archive for the ‘Ulcerative Colitis’ Category

BWH/Harvard Northport IBD Study to begin next month

2016 BWH/Harvard Crohn’s & Ulcerative Colitis study to begin in November

In 2011  Dr. Josh Korzenik, The Director of the Crohn’s and Colitis Center at Brigham and Women’s Hospital (BWH), one of the leading IBD researchers in the country, and his team conducted a study of Northport residents through health questionnaires and medical record confirmations. He discovered a health cluster of Northport residents with either ulcerative colitis or Crohn’s disease that was 10 to 15 times higher than national standards. This was one of the largest health clusters of these illnesses he has ever seen.

The causes, and a cure, for ulcerative colitis and Crohn’s disease have long baffled the scientific community.  Northport’s historical exposure to specific heavy metal toxins may be a contributing factor to the abnormally high number of residents with ulcerative colitis and Crohn’s disease.

Dr. Korzenik is moving forward next month with a new epidemiological case-control study of Northport residents; focusing on a possible correlation to chronic exposure to heavy metals triggering ulcerative colitis and Crohn’s disease.

In March I asked for volunteers for this new study. Participants needed are residents diagnosed with either Crohn’s or Colitis, as well as residents who do not have either of these illnesses (a control group).  I received many volunteers to participate.  Thank you!   However, I do not want to miss anyone who may want to participate in this ground breaking study.

If you have not already contacted me* to volunteer and you are willing to participate in this study, both diagnosed residents and non diagnosed residents, please e-mail me as soon as possible.  The study begins in the next two weeks.  

Contact Info:  jamie_paparich@hotmail.com   or  northportproject@hotmail.com

* If you are not sure if you contacted me already please feel free to e-mail again!

The study is simple, and will take only a few minutes of your time.  You will be contacted by the research team, either by telephone or e-mail depending on your preference, to give your consent to participate in the study.  A questionnaire and a kit including scissors and nail clippers to obtain hair and nail samples will be sent to your home.  You will then send the packet back to the researchers, and the assays will be done at their lab.

Thank you so much to the community for your amazing support in volunteering for this much needed study!

 

Contact Info:  jamie_paparich@hotmail.com   or  northportproject@hotmail.com

Linking Air Pollution to Colitis & Crohn’s

Linking Air Pollution to Ulcerative Colitis and Crohn’s Disease;                      

A statement for Northport residents, epidemiologists, research organizations and universities on an opportunity for an epidemiological case-control study on Crohn’s and Ulcerative Colitis that continues to be ignored

By Jamie Paparich

Extensive studies continue to be done on human health issues linked to exposure to air pollution. It is well documented that exposure to air pollution has been a contributing factor in multiple forms of lung and heart diseases.

However, almost no studies have been done on the effects of air pollution on the gastrointestinal tract, specifically the intestines. Even though the bodies intestines absorb the majority of the toxins inhaled and ingested from air pollution.

Crohn’s Disease and Ulcerative Colitis are the two known inflammatory bowel diseases (IBD). Crohn’s disease can cause inflammation throughout the entire GI tract, anywhere from the mouth to the anus. It most commonly effects the small intestines, causing chronic inflammation of the lining of the small intestines.  Ulcerative colitis impacts the large intestine/colon.  Colitis causes inflammation and open sores, or ulcers on the lining of the large intestine/colon. Both Crohn’s and Colitis causes severe abdominal discomfort and frequent emptying of the colon. These diseases are incurable and impacts not only the patients long term health, but also their quality of life. The scientific and medical community have been unable to discover what causes these rare diseases, which limits the treatment options.

AIR POLLUTION

Depending on where you are, air pollution can contain anything from fire smoke, ash, emissions from smelters, mining operations, power plants, construction sites, road construction, and automobiles…just to name a few. All air pollution contains particulate matter (PM). Particulate matter is liquid and solid particles suspended in the air that contains a mixture of the toxic pollution, the dust and pollen in your air.  The particulate matter is how the toxins from pollution enter the body. 

Exposure

Inhalation & Dermal:

There are two sizes of particulate matter.

– PM 10:  10 microns (a millionth of a meter) in diameter or less. These are small enough to be inhaled and accumulate in the respiratory system. Many of the particles pass from the respiratory system through mucus down the GI Tract.

– PM 2.5:  2.5 microns in diameter (1/10,000 of an inch). These are so small they are inhaled into the respiratory system, but then are able to pass through the lungs into the bloodstream, and also from the respiratory tract through the GI Tract. These size particles can also be absorbed through the skin.

Ingestion:

The particulate matter falls onto gardens, crops, the food animals ingest, water sources, and the water ways fish inhabit. In turn, we ingest the PM through those products when consumed.

NORTHPORT AIR POLLUTION

In the case of Northport, air monitoring has shown that our air contains dangerous levels (way above safety standards) of arsenic and cadmium.  This is from the emissions released from the smoke stack at Teck Resource, a Canadian smelter located 3 miles upriver. The particulate matter in our pollution contains several heavy metals, not just arsenic and cadmium, because of the smelters emissions. 

BODIES REACTION

Gastrointestinal Tract

    • Inhalation:  Once particulate matter is inhaled into the respiratory tract, it is sent through the GI tract through mucocilliary clearance, eventually entering the intestines.  The majority of the  particulate matter inhaled into the body will end up in the intestines.  Not all of these toxins are expelled from the body. Many are absorbed and accumulate into the intestinal walls. This induces systemic effects; directly effecting the epithelial cells (the barrier between toxic invaders and healthy cells lining the intestine). System inflammation then triggers immune activation.  Over time, this leads to the immune system turning on the bodies good cells as well.
    • Ingestion:  Food and water containing PM toxins are ingested into the stomach, then passed to the intestines, where the toxins will, once again, spend the longest amount of time in the body, before being expelled from the body. The toxins not expelled will also inducing systemic effects, system inflammation, and eventually immune over stimulation.

IMMUNE SYSTEM & BIO-TOXICITY

Particulate matter alters the body’s immune system reaction. The immune system discovers and destroys disease causing organisms, viruses, and foreign agents in our bodies. The immune system kicks into overdrive due to the ingestion and inhalation of particulate matter, especially containing heavy metals. Eventually the chronic, overstimulation of the immune systems will cause chronic inflammation throughout the body, or to specific organs. 

Exposure to high levels of heavy metals is an obvious concern.  However, the more dangerous type of exposure is long term exposure, even to low levels.  This type of exposure causes the heavy metals to slowly accumulate in the bodies organs, causing biotoxic effects.  According to the research published in Heavy metal pollution and human biotoxic effects, (Duruibe, J. O. 1 *, Ogwuegbu, M. O. C. 2 and Egwurugwu, J. N. 3),  “….(G)eneral signs associated with biotoxicity of (sic) cadmium, lead, arsenic, mercury, zinc, copper and aluminum poisoning:  gastrointestinal (GI) disorders….”

INFLAMMATORY BOWEL DISEASE

In people with IBD, the immune system attacks the heavy metal toxins in the intestines.  Because of the accumulation of heavy metals toxins, from chronic exposure to specific air pollution, some individuals immune systems go haywire, attacking the toxins and healthy cells.  This eventually leads to chronic-inflammation, ulcerations, and thickening of the intestinal wall.  The result of this is Crohn’s disease or Ulcerative Colitis, and likely several other auto immune health issues.

However, not all people exposed to the same level of specific heavy metal toxins will develop Crohn’s or Colitis.  When the first cluster of Northport residents with either Ulcerative colitis or Crohn’s disease was discovered in 1992 statistically 1 in 100,000 people in the U.S. were diagnosed with one of these IBDs.  In 1992 Northport’s population was approximately 375 people, and 15 residents had been diagnosed with either Crohn’s or Colitis.  In 2012 a research team from Massachusetts General Hospital’s Crohn’s and Colitis Center conducted an IBD study of Northport and confirmed 17 people had either Crohn’s or Colitis, the population in 2012 was still around 375 people.  This is 11.5 to 15 times higher than the national standard. 

In 1992 and 2012’s study the residents diagnosed with either Crohn’s or Colitis lived within a two mile radius of each other, in the Columbia River Valley.  This valley was nicknamed “The Heavy Fallout Zone” by the EPA, due to the high levels of heavy metal toxins found in their sampling.  The levels were so elevated in this area because Teck’s air emissions, full of heavy metal toxins and sulfer dioxide, would flow north down the river and become trapped in the valley.  There is would settle, the particulate matter falling onto every surface below it, and being inhaled by the residents living on the little farms scattered along the banks of the river. These residents were chronically exposed to the dangerously high levels of arsenic and cadmium in the air for decades. 

However, the question still remains.  Why did some of these residents, living in the “heavy fallout zone”, contract Colitis or Crohn’s and some didn’t.  It impacted the children who grew up in the area the most, but not all of the children.  In the study; Exposure to ingested airborne pollutant particulate matter increases mucosal exposure to bacteria and induces early onset of inflammation in neonatal IL-10-deficient mice, (Salim SY1, Jovel J, Wine E, Kaplan GG, Vincent R, Thiesen A, Barkema HW, Madsen KL), the research team aimed to determine if exposure to particulate matter during the neonatal period and early-life would alter colitis in a mouse model.  The team concluded “Our data suggest that early exposure to pollution particulates can result in an earlier onset of intestinal disease in genetically susceptible hosts and can alter responses to gut injury in later life.”

Scientist have not been able to discover an inheritance/genetic pattern to IBDs.  Most scientists and researchers whose work is focused on Inflammatory Bowel Diseases and the GI Tract believe both genetic and environmental factors trigger the illnesses. 

Science Director of the Science and Environmental Health Network (SEHN) , Ted Schettler, M.D., M.P.H., shared his thoughts about the high occurrence of these diseases in our area; “If it is in anyway related to smelter emissions I’d wonder about changes in the intestinal micro biome as a plausible mechanism that could link metal exposure to inflammatory bowel disease.”

EPIDEMIOLOGY CASE-CONTROL STUDY

The community of Northport exceed all of the requirements to conduct an accurate epidemiological case-control study of the contribution chronic exposure to specific heavy metal toxins in air pollution has on triggering inflammatory bowel disease, as well as the impact it may specifically have on the immune system response.

The EPA is currently conducting a Human Health Risk Assessment of the area, as part of their agreement with Teck Resources in conducting remedial investigations and feasibility studies of the Upper Columbia River area and Northport. The EPA, nor Teck have any plans to monitor our air in any of the investigations or assessments.  The EPA has no interest in looking at the cluster of diagnosed cases of Crohn’s or Colitis in the area, spanning three generations. 

Today members of the community continue to be diagnosed with Crohn’s or Colitis, and more will continue to be diagnosed until something is done. 

Runaway Train

Small communities through-out the United States are slowly, and unknowingly, being poisoned.  The poisons are unavoidable.  The residents are exposed to them from the air and dust they breath, the water they drink, the soil they grow gardens in, and the small particulate matter that they absorb through their skin.  There is no where to hide, and even if there were they aren’t even aware of the danger they should be hiding from. The question is, perhaps they are better off not knowing?

Industrial pollution is nothing new.  To a small community the benefits usually outweigh the cost.  These industries bring hundreds, if not thousands, of jobs to their community.  They bring with them a promise of a better future.  A promise of job security, retirement, 401k’s, insurance.  They also bring with them their pollution.  Industrial pollution is an unavoidable consequence that we have been aware of since the Industrial Revolution began in 1840.  For well over a century the damage the toxic by-products of these industries were basically ignored.  There was very little evidence that the pollution was causing effects to people’s health or the environment.  By the time enough scientists, environmentalists, and personally affected advocates took notice the problem was like an oncoming, out of control train with no brakes.  Stopping it would take a miracle, ignoring it would eventually cause a disaster unlike any we had ever seen.

The Government saw the train coming, so they attempted to slow it down.  The Environmental Protection Agency (EPA) was established on December 2, 1970.  Once the EPA fully understood the depth of the damage they were dealing with more government agencies were formed, specifically the Department of Health (DOH).  The amount of locations and the severity of the damage industrial polluters had created was simply unmanageable.  In 1980, in an attempt to hold these polluters financially responsible for the clean-up of these sites, a federal law was passed.  The Comprehensive Environmental Response, Compensation, and Liability Act (CERCLA).  In 1986 The Superfund Amendments and Reauthorization Act of 1986 (SARA) was also passed.  CERCLA & SARA gave the EPA the resources to establish and begin remediation of Superfund sites, locations throughout the U.S. so contaminated they require long-term investigations and millions of dollars of remediation to effectively clean up the hazardous materials.

Almost all Superfund sites are located near communities impacted by the toxins from the site.  The Agency for Toxic Substances and Disease Registry (ATSDR) was created to assist the EPA with the hundreds of health consultations of impacted communities at Superfund sites needed.  It appeared the Government’s attempt to at least slow down the train was working, in theory.

My family is from Northport, Washington. We were one of those communities blissfully ignorant that we were slowly being poisoned. Northport is located in northeast Washington, 12 miles from the Canadian border.  It is a breathtaking little town, situated on the banks of the mighty Columbia River.  It is a small, close knit community of 375 people.  Many of the residents are from the families of the town’s original settlers.   

For over 100 years the residents of Northport have been, and continue to be, poisoned by the heavy metal toxins released by Teck, a lead and zinc smelter in Trail B.C. Canada.  The discharge from Teck’s smelting process is referred to as slag.  Slag is a black, sand like material that contains arsenic, lead, cadmium, and mercury.  From 1906 – 1996 Teck disposed of their slag through two specially designed pipes that dumped it directly into the Columbia River, 3 miles upriver from Northport.  Teck’s records indicate they dumped approximately 9.8 million tons of slag into the river over the course of 90 years. 

The air emissions from Teck’s smelting process are released from two smoke stacks. Teck increased the height of these smoke stacks shortly after a lawsuit brought against them in 1933. Two farmers from Northport sued Teck for damages to their crops and cows, caused by the massive amount of sulfur dioxide Teck was releasing from the smoke stacks.  Statements from residents at the time recall the suffocating smell of the sulfur dioxide, paint peeling off cars, barb wire fences disintegrating, and farm animals falling over dead.  Teck eventually lost the suit and was told to find a way to drastically reduce their emissions of sulfur dioxide.  In an attempt to comply, but avoid financial loss, they raised the height of the smoke stacks.  Their theory was their air pollution would be dispersed high enough as to not cause damage to the environment below.  Unfortunately the increased height of the smoke stacks actually dispersed the pollution further.  This pollution often got trapped in the valley in Northport, giving the farms located in the valley the nickname of “the heavy fallout zone”.  All four Department of Ecology air monitoring studies done in Northport between 1992-1994 concluded levels of arsenic and cadmium were well above all safety standards.  Arsenic levels were 200 times higher than recommended safety levels.

The EPA conducted a site assessment of the area between 1999-2003.  They found it was so contaminated it fell under CERCLA, or the Superfund guidelines. A remedial investigation and feasibility study was planned. The EPA issued Teck a Unilateral Administrative Order, demanding they assist with the investigation.  Teck ignored the order, and the EPA all but forgot about it.  Until two members from the Colville Confederated Tribe filed a civil suit under CERCLA in 2004.  This suit demanded that the EPA enforce their order against Teck.  After several court battles Teck lost it’s last appeal and was forced to cooperate with the EPA to complete a study of the Upper Columbia River.  The first phases of the studies began in 2006.  After 9 years of testing, and usually re-testing, the studies are finally progressing.  There has been a clean-up of a beach and many residential soil clean-ups.

However, despite the data of contamination collected from the EPA investigations, and the multiple health issues reported by the residents, the DOH and the ATSDR did not think the health issues and exposure to the heavy metal toxins were linked.  In 2004 the ATSDR published their Public Health Assessment of Northport.  In it they stated “ATSDR’s conclusions are based on the environmental sampling and health outcome data that were available to ATSDR between 1995 and 1999. With few exceptions, these data showed no evidence of adverse health effects associated with exposure to environmental contaminants, but significant data gaps existed.”

When an established government agency tells you their is no evidence of health issues caused by your exposure to confirmed environmental toxins that should be a relief.  It was a relief, to many people.  However, the extremely high rate of rare illnesses and diseases diagnosed in three generations, of a town of approximately 350 people, still weighed on the community member’s minds.  The discussion of the illnesses died down a bit after the report.  Until the next diagnosis was made, and another, and then another.

Residents in Northport decided to conduct their own health survey in 2009.  Health questionnaires were distributed to current and past residents of Northport, spanning three generations. We received more than 500 completed questionnaires. Per the health cluster guidelines of the CDC and ATSDR, the results we collected from the returned questionnaires showed health clusters of brain aneurisms (23), specific cancers (65), parkinson’s disease/multiple scoliosis (13), thyroid diseases (116), and ulcerative colitis and crohn’s disease (54).   According to the ATSDR’s ToxGuide, the EPA’s toxicity profiles, and the DOH’s toxic standards, chronic exposure to the heavy metal toxins released by Teck can be linked to all of these health issues.

The DOH and the ATSDR had already discovered the health cluster of ulcerative colitis and crohn’s disease in the area in 1992 and 2004, but they claimed there was no way to link the extremely rare diseases to our exposure to the heavy metal toxins of concerns the EPA identified.   

After publishing the results of our community health survey a doctor with Massachusetts General Hospital’s Crohn’s and Colitis Foundation contacted us.  He conducted his own study on the reported cases of ulcerative colitis and crohn’s in the area.  The study concluded that the rates of these diseases were 5 to 11 times higher than expected.  Based on these results an additional study is being conducted of the residents with ulcerative colitis and crohn’s disease, focusing on the amount of accumulated toxins found in their systems and referencing the EPA residential soil study results.

I recently contacted the regional director of the ATSDR, Rhonda Kaetzel, and Kay Morrison with the WA DOH, regarding the Government agencies unwillingness to go forward with a human health assessment of Northport. The Canadian smelter has admitted fault for the pollution, and the environmental testing confirms the specific heavy metal toxins found above standard safety levels.  Armed with this information, it would seem our little town of 375 people would be ideal for several epidemiological research studies on the many health clusters discovered.  Many of the illnesses reported do not have cures, and what causes them has yet to be discovered.  In part, Ms. Kaetzel, the ATSDR director, responded with: “…DOH has communicated in the past that establishing a new link between a disease and environmental contaminant is not something that can be achieved without studying a large population of people with the disease and who have diverse exposures. Without a well-established link or specific funding, this type of research study is beyond the scope of the ATSDR-funded program within DOH and ATSDR.  Ms. Morrison’s response was more apologetic, in it she stated: “I understand that you’d like more research to be done to discover links between environmental contaminants and a number of reported illnesses in the Northport area.  Unfortunately EPA and ATSDR do not perform this kind of broad research….”

Chronic exposure to even low levels of heavy metal toxins cause health issues, the ATSDR, DOH, and EPA admit this.  The lack of knowledge on the actual health effects triggered or caused by this exposure are not well understood by these agencies due to the lack of long term investigations.  However, if they would utilize our established environmental history, and bio-monitoring of the impacted residents, a great deal might be learned.

Time and time again all of the Government agencies created to protect us have told me that our communities health issues are “beyond the scope” of their responsibilities.  So if it is none of these agencies responsibilities to protect future generations from the health issues possibly caused by long term exposure to low levels of these toxins, whose responsibility is it?

Maybe these agencies just assume it is better off not knowing.  Let someone else jump in front of that train.

If you or a family member suffers from Crohn’s or Colitis take a moment to complete an online survey that can provide info needed to find cures!

Your participation in an online research study
can help us find cures!

CCFA Partners has the unprecedented potential to improve the quality of life for patients everywhere. Join the 10,000 people who are already helping us build knowledge for a better future. All you need to do is fill out an online survey.

How does CCFA Partners work?
We want to enroll as many people with Crohn’s disease or ulcerative colitis from across the country as possible and hope that you will be among them. We will gather information about you and your experience with Crohn’s or colitis through a brief, confidential online survey. We will contact you by email every three months to let you know about our progress, and provide you with educational information about IBD and IBD therapies. Every six months we will ask you to update us about your condition in a brief follow-up survey. There is no cost involved. All data will be collected using a secure Internet server, so your personal information is safe and confidential. To start your survey, please click the special link at the end of this email.

If you decide to join CCFA Partners now, you can opt out at any time in the future.

We hope that you will participate fully — the more people who participate, the more reliable the research results will be! Thank you for your consideration.

If you are 18 or older and want to continue to the survey, please start your survey here.

Comments worth posting – a special thank you from The Northport Project to Shayla

Comment from Shayla Phillips:

I cannot thank you enough for writing this….I am in the eigth grade and I am doing a school project on Northport. There was so much info on Northport in this and I fully enjoyed reading. Im Stephanie and Levi’s younger daughter Shayla

Shayla 

_________________________________________________________________________________________________

Response submitted by The Northport Project  | In reply to Shayla.   

Hi Shayla –
Thank you for all the support you and your family have given me. It is actually because of you and your brother that The Northport Project even exists.

A few months after I began The Northport Project in 2008, I was so frustrated with the lies and misconceptions the DOH and EPA had told the kind people of Northport, along with the difficulty in getting past and present residents to fill out health questionnaires in order to move forward, I almost just gave up.

It was then that your Mom e-mailed me and told me of your brother’s diagnosis with Ulcerative Colitis and about your struggle with juvenile rheumatoid arthritis. That was the push I needed to not only keep going but to start pushing harder for the information the DOH and EPA were trying to avoid providing me and to push the past and present Northport residents to take the time to complete the questionnaires, necessary to get the information necessary to get epidemiological studies done in the area. Two years later we were able to get two physicians from the Crohn’s & Colitis Center at Massachusetts General Hospital to conduct the first phase of their epidemiological study of Northport residents, past and present, diagnosed with Ulcerative Colitis and Crohn’s disease. The Northport IBD Study, (designed specifically for Northport), just concluded phase I of this study, in which the physicians were able to conclude that there is a health cluster of these diseases currently in the community, and that there has been a consistent cluster of these diseases since approx. 1955-60. With this information they are currently preparing an abstract, which will be used to obtain grants and funding for phase II, and eventually a manuscript of their findings. The results of this study could very likely help in discovering the cause, or specific triggers, of Ulcerative Colitis and Crohn’s disease, still unknown to the medical and scientific community.

So it is you I should be thanking. It is because of your Mom and her description of the suffering both you and your brother have endured so courageously. As well as your parents unselfishness to contact me to contribute whatever information they could in order to ensure this did not happen to any other children. They were not looking to blame anyone, or for compensation for the pain and suffering your family had endured (although they have every right to!), they honestly just wanted to help.

So thank you sweetie – and please feel free to e-mail me anytime – jamie_paparich@hotmail.com

Sincerely,
Jamie Paparich

CCFA – Patient Participation for Research Registry

http://www.ccfa.org/trials/studies/CCFAPartners

 

 

The Crohn’s & Colitis Foundation of America is in the process of developing CCFA Partners, a new program aimed at enlisting patient and family participation in activities to further increase our understanding of Inflammatory  Bowel Diseases (IBD). Specifically, CCFA is assessing the feasibility of building a long term patient registry to support IBD research.

CCFA sponsors many targeted research projects on an ongoing basis and one of the challenges is identifying IBD patients who are eligible to participate in clinical studies. By establishing a registry of patients from across North America, we can broaden participation and inform patients who are members of the registry of upcoming projects which may be of interest to them.  Increased patient involvement can lead to more rapid research progress by shortening the time required to compile sufficient research data to complete the project(s).

At this time, we are investigating the feasibility of establishing such a patient registry by soliciting opinions and recommendations about how to organize the registry from a small, randomly chosen number of patients and/or their family members, and/or other CCFA members and supporters. You may be contacted by email or by direct mail in the near future and asked to complete a brief online survey by our Data Center at the School of Medicine of the University of North Carolina at Chapel Hill. These email survey invitations are sent from pasp_cgibd@med.unc.edu and they contain a direct link to the survey in the body of the email. We hope you will support this most important initiative.

If you have questions, please contact us at: info@ccfa.org

The investigators of CCFA Partners are:
Lloyd Mayer, MD
Chair, National Scientific Advisory Committee

Bruce Sands, MD, MS
Chair, Clinical Research Alliance

James D. Lewis, MD, MSCE
Vice-Chair, Clinical Research Alliance
Chair-Elect, National Scientific Advisory Committee

Sunanda Kane, MD
Chair, Patient Education Committee

Updated: 6/3/10

Northport, WA IBD Study – Article in the CCC’s July Newsletter

CCC Newsletter 7/2011 - Northport IBD Study Article

 

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