May isDigestiveMotilityAwarenessMonth

If you, or a loved one, suffer from

distressing digestive problems of

nausea, heartburn, bloating,

abdominal pain, constiption

and other digestive symptoms,

we invite you to learn more.

The Gastroparesis and

Dysmotilities Association,

a federally registered charity,

has sponsored this insert

especially for you.

Gastroparesis & Dysmotilities Associationwww.digestivedistress.com

Bringing familiesinto focus;

finding solutionsfor digestive

motility diseases

A S P E C I A L A D V E R T I S I N G P U B L I C A T I O N

Digestive Motility Awareness Month

Stories by Alex Frazer-Harrison

he ability to digest food andremove waste from our bodies isa fundamental necessity — sowhen these systems malfunction

or stop altogether, the consequencescan range fromuncomfortable tolife-threatening.

Yet gastrointesti-nal (GI) motility dis-orders remain amystery to manypeople — includingmany physicians.

In an undertakingthat may go a long

way toward raising the profile ofthese disorders among the public andthe medical community, Calgary is

now home to Canada’s first centre ofexcellence dedicated to studying themany conditions that fall under the GImotility disorders banner.

The centre’s goal is to find bettermethods of diagnosis and treatment.

While relatively few people experi-ence the more severe forms of GImotility disorders such as gastroparesis— which affects the body’s ability todigest food and the stomach’s abilityto empty — large numbers sufferfrom milder forms.

Some of these milder forms includedyspepsia; symptoms of nausea, full-ness, bloating and abdominal discom-fort after a meal; gastroesophagealreflux disease, persistent heartburnand stomach-acid wash; and chronicconstipation.

Many may suffer with constant linger-

ing digestive symptoms, frustrated intheir attempts to get a diagnosis.

“Across Canada, there are millions ofpeople suffering from some form ofdigestive motility disorder symptoms,”says Jeanne Keith-Ferris, who estab-lished the Gastroparesis &Dysmotilities Association (GPDA) whenshe discovered the lack of supportavailable when her own children, Jennand Thomas, developed gastroparesis.

“Often these people can’t get goodrelief from medication, and what’sunknown to them is that these disor-ders are often related to a problemwe call poor digestive motility.”

Motility is the muscle-pumpingaction that operates from the esopha-gus through to the bowel. It is essen-tial for the intake and digestion offood, the absorption of nutrients and

the elimination of waste.But the nerves involved can malfunc-

tion, compromising motility.The ailment can have far-reaching

effects on the body’s systems, Keith-Ferris says.

“Many who suffer from scleroderma,lupus, chronic liver failure, HIV, MS andother diseases may have their illnessextend into the working of the diges-tive tract, affecting the digestive nerves’and muscles’ ability to digest a meal.The resulting digestive symptoms canbe enormously challenging to control.”

Doctors have different names forconditions involving GI motility disor-ders, depending on the area affected.

“But it’s the same story — and forsome people, the entire digestive sys-tem is affected,” Keith-Ferris says.

CONTINUED, NEXT PAGE

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The Parkinson’sSociety of Southern

Alberta recognizes thatMay is Digestive Motility

Awareness Month.

If you have Parkinson’s,you may experience

digestive motility issues.

The Parkinson’sSociety of SouthernAlberta sends their

congratulations for thenew Digestive MotilityCentre at the Foothills

Hospital.

PSSA is dedicated to helping people andfamilies of Southern Alberta who livewith Parkinson’s and related disorders.Our core services include individualand family counseling, support groupsfor people with Parkinson’s and theircaregivers, Parkinson’s specific physicaltherapy support and speech therapy.Community education and publicawareness programs are also offeredby PSSA.

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2

The best-known of the more commonconditions is probably irritable bowelsyndrome (IBS), a fairly common ail-ment, says Dr. Keith Sharkey, a professorin the departments of Medicine andPhysiology & Biophysics at the Universityof Calgary, and a leading researcher intogastrointestinal disorders.

IBS affects 10 to 15 per cent ofCanadians, predominantly women.

“These disorders can be relativelymild, where there’s a degree of abnor-mal motility — perhaps either slowingdown or speeding up the passage offood,” he says. “The most severe arethe ones where motility is too slow —where the stomach fails to empty. Andif you can’t move food through thegut, you in effect end up with anobstruction of the gut, which we call apseudo-obstruction.”

However, unlike a true intestinalobstruction, in pseudo-obstruction sur-

gery does not fix the problem, and forsome may actually hasten furtherobstructive episodes.

Symptoms of a GI motility disordercan include bloating, distention, painand frequent vomiting and diarrhea,Sharkey says, adding it often takescomplex diagnostic procedures to actu-ally identify what’s wrong, as standardblood tests and other assessments don’talways indicate that a problem exists.

“Most physicians aren’t trained to dothese procedures, or to expect this con-dition to be there,” he says.

Gastroparesis, considered one of themore severe forms of dysmotility, is fre-quently associated with diabetes,though it can be triggered by otherconditions, such as when Keith-Ferris’schildren contracted an infection duringa family ski trip a decade ago which ledto them developing the ailment.

CONTINUED, PAGE 7

Digestive Motility Awareness Month

Wil AndruschakFrom left, Dr. Martin Mintchev, Jeanne Keith-Ferris, Dr. Chris Andrews, Dr. KeithSharkey and Don Ferris at the University of Calgary Medical Building.

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aime Thomas was 27 when she wasdiagnosed with a gastrointestinalmotility disorder — but by then, ithad already changed her life.

“I had an intestinal infectionwhich affected the nerves in part

of the intestine,” Thomas says.“Sometimes the nerves would

overwork and sometimes theywould underwork.”

Like many with moderate to severemotility disorders, many of the day-to-day things we take for granted weredifficult.

“It’s been three years... It’s interferedwith sleeping, and certain foodsaggravate it. It starts to interfere withyour life; you start to think, ‘What amI eating that’s aggravating it? Whycan’t I eat?’”

Gastrointestinal motility disorderscan take many forms, and dozens ofdifferent names have been associatedwith conditions related to dysmotility.

Symptoms can range from heartburnto difficulty swallowing, to in moresevere cases nausea and frequentvomiting, as the muscular contractionsthat are supposed to move foodthrough the gut malfunction.

Thomas delved into holistic medicineand travelled to clinics from Switzerlandto the United States in order to findtreatments for her condition.

“I’ve done a lot of experimentingwith diet,” she says. “In some cases,I’ve made myself worse, and at othertimes I’ve made myself better.”

Thomas says she often has difficultygetting people to understand her situ-ation because, like many with motilitydisorders, she often doesn’t look ill.

“I look very healthy to the averageperson, but I know, underneath, thethings I’m dealing with,” she says.

In 2005, Dr. Catherine McKay lost hermother, Brenda, to a chain of eventsthat started when she was diagnosedwith an intestinal pseudo-obstruction,another form of GI motility disorder.

“She was about 40 and she startedhaving profuse vomiting and lots ofabdominal pain,” recalls McKay. “She

went to the doctor because she was anurse herself. She was told she wascrazy, and this went on for six yearsuntil she was diagnosed.”

McKay saw her mom visit some 60physicians in Ontario and elsewhere,enduring surgery that ultimately result-ed in her losing her large intestine.

Then, Brenda went to the MayoClinic.

“She was told she had aproblem with her auto-nomic nervous system,”says McKay. “The sadthing was at that timethere was not enoughresearch and she wastold this was going to beher life. By this time itwas affecting her stomach and smallintestine.”

By 2004, Brenda had lost most of hersmall intestine and required intra-venous feeding (called TPN, or totalparenteral nutrition) to stay alive, andher only hope was a multi-organtransplant, which was conducted inApril 2005 and was initially successful.But she succumbed to an infectionthat August at the age of 48.

“People don’t want to talk about

bowel problems — it’s embarrassingfor them,” says McKay, who says mostresearch and fundraising publicitytends to focus on issues like cancer,heart disease and other gastrointesti-nal conditions such as ulcerative colitisand Crohn’s disease. “Yet more peopleare affected by this than by Crohn’s.”

McKay was inspired to undertake aPhD at McMaster Universityon gastrointestinal motilitydisorders — in particularstudying the interstitial cell ofCajal (named for Nobel laure-ate Santiago Ramón y Cajal, aSpanish pathologist), a cellthat acts to trigger the reac-tions of the intestinal tract —in order to promote more

research into her mom’s condition.And she has a personal urgency to

see increased research into causes andtreatments of GI motility disorders.

“I have bad migraines, and my momhad them as well,” she says. “There issome concern I might be parallelingher condition.”

But there is hope for those with GImotility disorders. Until a few yearsago, Jenn Ferris, 18, was unable to goto school regularly due to severe gas-

troparesis, a motility disorder thataffects the body’s ability to digestfood and empty the stomach.

Ferris and her brother, Thomas, devel-oped the condition after contractingan infection on a family ski trip. Forthe siblings, continual nausea and fre-quent vomiting became a fact of life.

“The difficult thing about the nauseais it saps your energy,” Ferris said in a2007 interview. “It’s really difficult tofunction when you’re consumed bythe nausea, and you wake up feelingsick and go to bed feeling sick.”

Ferris’s dream is to act onstage, butthe disorder prevented her from get-ting roles in school plays because shecouldn’t predict her condition fromday to day. But after being implantedin 2004 with a groundbreaking gastricelectrical stimulation device, Ferris’slife has turned around.

Her symptoms began to decrease,and she was able to go to school fulltime, and finally pursue her dream ofbeing a performer. Today, she attendsthe American Musical and DramaticAcademy in New York City, with hereyes set on Broadway.

“I feel great — the things the implanthas done for my quality of life havebeen amazing,” she says. “There’s a lit-tle metal box under my skin, so I have tobe careful with activities like dance class-es. But it’s helped me so much, I wantother people to have that kind of help.

“I went from housebound, withoutmuch hope at all, to New York City.”

Ferris says she’s excited that a centrefor excellence has been established inCalgary, so local people who have GImotility disorders don’t have to travelto seek the latest treatments.

Adds Thomas: “There definitelyneeds to be patient-doctor communi-cation and learning to be done.”

As for McKay, she hopes the newCanadian Centre for Digestive Motilitywill be able to attract the best andbrightest researchers and physicians towork together to discover ways tobetter diagnose and treat GI motilitydisorders.

‘I know, underneath, the things I’m dealing with’

J

Don MolyneauxThomas Ferris, 16, and sister Jenn, 18, have been able to resume normal livesthanks to special electronic implants that help maintain digestive motility.

“What am Ieating that’s

aggravating it?Why can’t

I eat?”

Digestive Motility Awareness Month4

ompared to other conditions, thestudy of gastrointestinal motilitydisorders is still relatively in itsinfancy, with researchers stillexploring ways of best treating

the many conditions that fall under itsumbrella.

But thanks tostate-of-the-artimplants and moretraditional meth-ods, there is hopefor many that it’spossible to restoresome normality.

“Once the diagno-sis has been made,the vast majority of

treatments are going to be related tolifestyle changes and medication,” saysDr. Christopher N. Andrews, an assis-

tant professor of gastroenterology atthe University of Calgary’s Faculty ofMedicine who specializes in GI motilitydisorders.

“For example, we often find that forpeople with GI motility disorders, cer-tain foods are harder to digest thanothers, so we recommend smallermeals spaced out throughout the day.

“Simple things like that can make adifference.”

Medications exist to help with thenausea associated with GI motility dis-orders, and to help the stomachempty faster, Andrews says, addingthe long-term effects of the drugs canbe variable.

“We’re always hoping for the idea offinding a drug that works well andhas no side effects,” he says.

“And some patients will get some

efficacy from a medication for awhile, and then it’ll stop workingfor them.”

For people with more severe formsof GI motility disorders, such as gas-troparesis, a relatively new surgicalimplant option has the potential tosignificantly reduce the symptoms ofthe disorder. In the early 1990s, Dr.Thomas Abell of the University ofMississippi Medical Center in Jacksondeveloped gastric electrical stimula-tion (GES), using a device that helpsimprove or restore the involuntarynerve impulses necessary to movefood through the gut as it digests.

“The device I have implanted in mystomach has little leads into the stom-ach wall, and they send electricalimpulses every five seconds … thatpretty much allows me to live,” says

Jenn Ferris, 18, a Calgarian who alongwith her brother was implanted byAbell several years ago to address hergastroparesis.

“It really changed my life.”Ferris’s story is an example of a best-

case outcome for the GES implant,says Abell.

“Of the people who responded totreatment, 80 per cent of them have apretty good response, with at least a50 per cent reduction of symptoms,”he says. “And with this condition, a 50per cent reduction is worth having.”

Even better, half of those who expe-rience this significant level of reliefachieve a reduction of 80 per cent.

“They feel like they’ve gone to heav-en,” Abell says, noting that Ferris fallsinto this category.

CONTINUED, NEXT PAGE

CTreatment options slowly gaining ground on disorder

Dr. Christopher Andrews

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Digestive Motility Awareness Month5

FROM PAGE 5Abell has spent the last 30 years

working in the area of GI motility dis-orders, and about 20 years ago startedto work on a way to stimulate the gutelectrically. He implanted his firstpatient with GES in January 1992; sincethen, he estimates about 2,000 peoplehave been implanted worldwide.

Andrews’ team recently performedthe first Calgary GES implantation on adiabetic (gastroparesis is a potentialcomplication for those with diabetes).

“The patient seems to be doing quitewell,” reports Andrews. “She’s in her

30s ... people can get gastroparesis atvirtually any age.”

GES doesn’t work the same for every-one. Ferris’s brother Thomas, for exam-ple, was implanted at the same time,and while he also experiencedimprovement to his gastroparesis-relat-ed symptoms, it wasn’t to the samedegree as his sister. Abell says he’sworking on developing a way to endo-scopically (non-surgically) test theeffectiveness of GES on a patientbefore committing to surgery.

Meanwhile, Dr. Martin Mintchev,director of the Biomedical

Instrumentation Laboratory and pro-fessor at the U of C, is developing thenext generation of implantable, micro-processor-controlled neuro-electricalstimulators to treat GI motility disor-ders.

“The idea is to practically recreate themotility of a given organ of the GItract,” he explains, “in much the sameway a pacemaker gives the electricalrhythm and the heart itself does themechanical action — here, we practi-cally recreate the motility.”

Mintchev has also developed a devicesimilar to an electrocardiograph, called

an electrogastrograph, that is used tonon-invasively measure electrical activi-ty within the GI tract, providing betterassessment of GI motility disorders.

“This multichannel system measuresthe electrical activity of the stomachwhich is of very low-amplitude and dif-ficult to interpret. It is in use inEdmonton already, and I would like tosee it utilized here as well.”

Mintchev says the new CanadianCentre for Digestive Motility will pro-vide an ideal venue for developing andtesting new homegrown technologysuch as this.

GPDA in the spotlightAbove: A tribute to Dr. Thomas Abell.Top left: Awareness night at Shea Stadium, New York.Top right: Former NFL star Archie Manning.Bottom left: Volunteers in Dalhousie, northwest Calgary.Bottom right: Calgary Stampede Parade.

Digestive Motility Awareness Month6

FROM PAGE 3Dr. Christopher Andrews, an assistant

professor of gastroenterology at the Uof C’s Faculty of Medicine, is anotherCalgary-based GI motility disorderresearcher. He says at least 52 disordersrelated to the nerves of the gut haveso far been identified.

This makes correct diagnosis a chal-lenge.

“We’re very good at diagnosinginflammation or ulcers or cancers orblockages,” he says. “But we don’thave a lot of tests that show us a mal-function in the nervous system. It’s asoftware problem as opposed to ahardware problem.

“We’re understanding more abouthow it works, but as it stands now,compared to other aspects of the gut,we’re very far behind in terms of hav-ing reliable tests to see if there are

nerve problems or muscle problems,”Andrews says.

“And there’s a big lack of awarenessamong the medical profession, throughno fault of their own.”

Until recently, those seeking answersabout GI motility disorders — andadvanced treatments suchas gastric electrical stimu-lation (GES) implants —had to leave Alberta, andeven Canada.

But through the supportof the GPDA, the U of Cand others, the new cen-tre of excellence, dubbed the CanadianCentre for Digestive Motility, aims tobring together expertise in gastroin-testinal issues for research and patienttreatment, while at the same timeinspiring medical professionals and stu-dents to specialize in the field.

“The centre will become a nucleuswhere we can accomplish treatmentgoals and research goals for these dis-orders,” says Sharkey, who, along withAndrews and others, will be part of theknowledge pool in the endeavour.

“There is no similar centre for this inCanada. We’re very excit-ed because it allowsCalgary to really focus onthese disorders as a centrefor training, absolutely.”

Dr. Martin Mintchev,professor and director ofthe U of C’s Biomedical

Instrumentation Laboratory, who hasbeen working on several engineering-based tools for diagnosing and treatingGI motility disorders, says the centrehas the potential to put Calgary “in theforefront of this research worldwide.The frontiers of contemporary medi-

cine will be pushed by this amalgama-tion of technology, clinical researchand basic science research.”

Mayo Clinic-trained Andrews, whowas part of the team that performedthe first local implantation of a GESsystem into a diabetic patient, says he’shopeful the centre will allowresearchers to more easily follow theprogress of patients.

Keith-Ferris’s family made one of thecentre’s major startup donations.

“We want people to understand thatthese symptoms are really common. Forthose folks whose doctor can’t put afinger on what’s wrong, and they’restruggling to find help ... they nowhave hope and a place to go,” she says.

A free forum on GI motility disordersis scheduled for June 14 at the Libin

Lecture Theatre in the Health SciencesCentre by Foothills Hospital.

For more information onGI motility disorders andthe Canadian Centre forDigestive Motility, visitthe GPDA website at

www.digestivedistress.comor call 247-3215.

One in ten Canadians - men, women and children - willbe affected by liver disease in their lifetime.

Support families living with liver disease in your community byjoining us at the Stroll for Liver by the River. All participants that raise

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LIVERight…Learn More…Visit liver.ca

CalgarySunday, June 8, 2008 9:00 a.m.

1 km - 10 km stroll Edworthy Park (north side of the Bow River)

Call (403) 276-3390 to register or visit www.liver.ca

Congratulationsto theGPDA

on May beingrecognizedas Digestive

MotilityAwarenessMonth, andthe openingof the newCentre forDigestive

Motility at theFHH in Calgary,the only one of

its kind in allof Canada

by the RiverFun walk for the whole family!

Join us in raising funds for liver research and education.

AA657894

The Scleroderma Society of Southern Alberta joins the Gastroparesis andDysmotilities Association (GPDA) in recognizing May as Digestive MotilityAwareness Month and extends best wishes to the GPDA on their patientsupport meeting and public forum.

Digestive motility is a common problem for those who suffer from scleroder-ma, a progressive disease of the vascular and immune systems in which theoverproduction of collagen results in the thickening, hardening and scarringof the skin and other organs.

Although scleroderma is considered to be a rare disease, as many peopleare affected by scleroderma as are affected by multiple sclerosis.There is no known cause and no known cure.

email: mgdustin@telus.net telephone: 403-281-7580 www.scleroderma.ca

Scleroderma Society of Southern AlbertaMember of the Scleroderma Society of Canada

The mission of the Scleroderma Society of Canada is to promote awareness of scleroderma, to support researchtoward finding a cure and to provide support and information to those affected by the disease.

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Digestive Motility Awareness Month7

FINDING ANSWERS FOR YOURDISTRESSING DIGESTIVE SYMPTOMS

Are you one of the Millionsof Canadians who suffer???~ IBS

~ Dyspepsia (gastroparesis)~ Hospitalized from gut troubles?

Who should attend:Anyone stuggling with persistant digestive symptoms andyour physician has been unable to help.Nurses, physicians, dietitians who want to learn from theexperts regarding gastrointestinal sensory/motility disorders.

Learn more about the University of Calgary’s new Digestive Motility Centre

Come learn from3 internationallyacclaimed physiciansand dietitian

L ibin Lecture Theatre is in the Health Science Centre, located in the Bldg,just north of Foothills Hospital (FHH) emergency room:

3330 Hospital Dr NW

www.digestivedistress.com

ho should attend:one stuggling with persistant digestive symptoms andphysician has been unable to help.es, physicians, dietitians who want to learn from the

www digestivedistress com

Heartburn . Pain . Nausea . Constipation . Bloating .

FREE PUBLIC FORUMLibin Lecture TheatreSaturday, June 14, 200812:30 pm

AA657875

Event sponsored by: GPDA