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>> ALL RIGHT PANEL, WE'RE READY TO GET STARTED.
WELCOME BACK TO OUR EDUCATIONAL VIDEO.
MY NAME IS SUSAN PECK.
I'M A NURSE PRACTITIONER IN THE DIVISION OF GASTROENTEROLOGY,
HEMATOLOGY AND NUTRITION
AT THE CHILDREN'S HOSPITAL OF PHILADELPHIA.
THIS EPISODE IS ON SURGERY AND HOSPITALIZATION.
I WOULD LIKE FOR YOU TO MEET OUR PANEL.
>> I'M NATALIE WALKER, A PEDIATRIC NURSE PRACTITIONER
IN PEDIATRIC SURGERY.
>> BOB BALDASSANO, DIRECTOR OF CENTER FOR PEDIATRIC
INFLAMMATORY BOWEL DISEASE.
>> I'M LINDA DESANTIS.
I'M THE NURSE MANAGER FOR THE INPATIENT GI UNIT.
>> I'M PETER MATTEI, PEDIATRIC SURGEON.
>> I'M NOELLE BATES.
I'M THE INPATIENT NURSE PRACTITIONER FOR THE
DIVISION OF GI AND NUTRITION.
>> THANK YOU VERY MUCH AND WE'RE HAPPY TO HAVE YOU WITH
US TODAY.
>> DR. BALDASSANO, SINCE THIS EPISODE IS ON SURGERY,
WHEN PATIENTS HAVE INFLAMMATORY BOWEL DISEASE,
WHEN IS SURGERY INDICATED?
>> WELL, WHEN PEOPLE WHO HAVE INFLAMMATORY BOWEL
DISEASE, AGAIN, WE ALL KNOW THERE'S DIFFERENT TYPES OF
INFLAMMATORY BOWEL DISEASE, AND BECAUSE OF THAT, THERE'S
DIFFERENT THERAPIES.
AND SO WE TYPICALLY LIKE TO TRY TO USE MEDICAL
THERAPIES, BUT OFTEN SURGICAL THERAPIES ARE VERY
IMPORTANT FOR US TO TAKE CARE OF OUR PATIENTS.
AND SO PATIENTS WHO HAVE CROHN'S DISEASE,
THEY OFTEN MAY REQUIRE SURGERIES FOR IF THEY HAVE
A LOT OF SCARRING OR NARROWING WITH THE NEAR INTESTINAL TRACT,
IF THEY DEVELOP ABSCESSES, OR IF THEY DEVELOP A PROBLEM
CALLED PERIRECTAL DISEASE.
THIS IS WHEN YOU HAVE ABSCESS OR INFECTIONS AROUND
YOUR ***.
AND WHEN THIS HAPPENS, THAT REALLY IS A MEDICAL/SURGICAL
PROBLEM AND IT'S REALLY VERY IMPORTANT THAT THE MEDICAL
TEAM AND THE SURGICAL TEAM WORKS TOGETHER TO REALLY
GIVE THE BEST CARE.
WITH ULCERATIVE COLITIS, AGAIN, SURGERY OFTEN
IS AN IMPORTANT THERAPY FOR SOME PEOPLE.
AND, I MEAN, DR. MATTEI WILL BE TALKING ABOUT THIS --
ABOUT HAVING SOMETIMES TO REMOVE THE PART OF THE INTESTINAL
TRACT THAT IS IRRITATED OR INFLAMED TO IMPROVE QUALITY
OF LIFE AND TO TREAT OUR PATIENTS.
>> SO DR. MATTEI, WHAT TYPES OF SURGERIES ARE AVAILABLE
FOR PATIENTS WITH INFLAMMATORY BOWEL DISEASE?
DO FAMILIES HAVE DIFFERENT OPTIONS?
>> YES, AND OF COURSE IT DOES DEPEND ALSO ON THE TYPE
OF DISEASE, THE TYPE OF INFLAMMATORY BOWEL DISEASE
THAT WE'RE DEALING WITH.
IN GENERAL, SURGERY INVOLVES REMOVING THAT PORTION
OF THE INTESTINE THAT IS THE CULPRIT THAT IS CAUSING
THE PROBLEM.
SURGERY IS NOT A CURE FOR EITHER OF THE DISEASES,
BUT WE CAN HELP PATIENTS GET OVER A PARTICULARLY DIFFICULT
COMPLICATION OR DIFFICULT TIME IN THEIR DISEASE.
SO FOR ULCERATIVE COLITIS WE WOULD REMOVE THE COLON
AND THE ***, WHICH ARE THE ORGANS THAT ARE INVOLVED
WITH ULCERATIVE COLITIS.
AND IN CROHN'S DISEASE, BECAUSE IT CAN AFFECT
MULTIPLE DIFFERENT PARTS OF THE BOWEL,
WE WOULD REMOVE THAT PART OF THE BOWEL THAT'S MOST INVOLVED.
>> CAN PATIENTS WITH INFLAMMATORY BOWEL DISEASE
HAVE LAPAROSCOPIC SURGERY?
>> LAPAROSCOPIC -- MOST PATIENTS WHO NEED SURGERY
FOR INFLAMMATORY BOWEL DISEASE ARE CANDIDATES
FOR MINIMALLY INVASIVE SURGERY OR LAPAROSCOPY.
AND WITH LAPAROSCOPIC SURGERY WE CAN USE MUCH
SMALLER INCISIONS AND THE PATIENTS GENERALLY RECOVER
MORE QUICKLY AND HAVE LESS PAIN AFTER SURGERY.
>> WHEN YOU SAY -- WHEN I HEAR SURGEONS TALKING ABOUT
OPERATIONS THEY SOMETIMES USE THE WORD RESECTION.
WHAT DOES THAT MEAN?
>> RESECTION IS EXACTLY THE REMOVAL OF THE OFFENDING
PART OF THE INTESTINE THAT IS CAUSING THE PROBLEM.
NOT EVERY PATIENT NEEDS A RESECTION.
IN SOME CASES, IF THERE'S A NARROW STRICTURE
OR NARROWING OF THE BOWEL THEN WE CAN DO WHAT WE CALL
A STRICTUREPLASTY, WHICH INVOLVES PRESERVING THE BOWEL.
BECAUSE AFTER A WHILE, IF YOU REMOVE TOO MUCH OF THE BOWEL,
YOU CAN END UP WITH SHORT BOWEL OR NOT ENOUGH
BOWEL TO ABSORB -- DIGEST THE FOOD AND ABSORB THE NUTRIENTS
THAT YOU NEED.
AND SO IN THAT CASE IF WE NEED TO PRESERVE THE LENGTH
OF THE BOWEL WE CAN DO A STRICTUREPLASTY,
WHICH IS A WAY OF OPENING UP THAT NARROW SPOT.
>> YOU MENTIONED LAPAROSCOPIC,
SO YOU'RE SAYING YOU USE SCOPES?
HOW EXACTLY IS THAT DIFFERENT THAN REGULAR SURGERY?
>> THAT'S RIGHT.
WELL, WITH TRADITIONAL SURGERY YOU WOULD MAKE
A GENERALLY RATHER LARGE INCISION.
BECAUSE IN ORDER TO -- EVEN THOUGH WE'RE REMOVING
A SMALL SEGMENT OF THE INTESTINE,
WE TEND TO NEED A LARGE INCISION IN ORDER
TO MOBILIZE THE PART OF THE INTESTINE THAT WE NEED
TO REMOVE.
BUT NOWADAYS WITH LAPAROSCOPY, AND MOSTLY
WHAT WE'RE TALKING ABOUT ARE LAPAROSCOPIC-ASSISTED
OPERATIONS, WHERE PART OF THE OPERATION IS DONE
LAPAROSCOPICALLY.
AND WHAT THAT MEANS IS THAT WE USE TINY INCISIONS,
TYPICALLY HALF AN INCH TO THREE-QUARTERS OF AN INCH IN
SIZE, ONE OF WHICH IS FOR A TELESCOPE OR LAPAROSCOPE
IN WHICH WE CAN SEE WHAT WE'RE DOING.
AND THEN THROUGH THE OTHER SMALL INCISION WE CAN USE
VARIOUS INSTRUMENTS TO MOBILIZE THE BOWEL,
DIVIDE ADHESIONS, AND PUT US IN A SITUATION WHERE WE CAN
ACTUALLY USE A VERY SMALL INCISION TO BRING THE BOWEL
UP OUT OF THE ABDOMEN AND RESECT IT OR REMOVE IT.
>> SO YOU MENTIONED ONE OF THE ADVANTAGES IS SCARS
ARE SMALLER.
ARE THERE ANY OTHER ADVANTAGES OF LAPAROSCOPIC?
>> WE DO SEE THAT PATIENTS RECOVER MORE QUICKLY AFTER
LAPAROSCOPIC SURGERY.
THEY HAVE LESS PAIN AND THEY'RE ABLE TO RESUME THEIR
ACTIVITIES BOTH IN THE SHORT-TERM,
EVEN JUST WALKING IN THE HALLWAYS AFTER THE SURGERY,
BUT ALSO RESUMING THEIR USUAL ACTIVITIES SUCH AS GOING
BACK TO SCHOOL OR WORK AND SPORTS AND THINGS LIKE THAT.
I THINK THE GREATEST APPEAL TO MOST PATIENTS AND THEIR
FAMILIES IS THE SCARRING, BUT FOR US WE ALSO SEE OTHER
ADVANTAGES INCLUDING THE MORE RAPID RETURN
TO FUNCTIONAL ACTIVITIES.
>> AND FOR LAPAROSCOPIC SURGERY,
IS THAT DONE EVERYWHERE?
DO ALL SURGEONS NOWADAYS JUST DO IT THAT WAY
OR IS IT A SPECIALTY THAT A SURGEON DEVELOPS?
>> IT'S BECOMING MORE AND MORE COMMON EVERYWHERE,
BUT I DON'T THINK IT'S AVAILABLE EVERYWHERE YET,
ESPECIALLY IN INFLAMMATORY BOWEL DISEASE.
BUT IN SPECIALIZED CENTERS WE'RE USING IT MUCH MORE
FREQUENTLY.
IN FACT, IT'S RARE FOR A PATIENT TO UNDERGO A VERY
LARGE INCISION AND LARGE OPERATION ANYMORE.
>> AND WHEN WOULD A PATIENT NOT BE A CANDIDATE
FOR LAPAROSCOPIC SURGERY?
>> THAT'S RARE IN OUR POPULATION IN CHILDREN.
BUT PATIENTS WHO'VE HAD MULTIPLE OPERATIONS WHERE
THEY WOULD HAVE VERY MANY ADHESIONS,
LOTS OF SCAR TISSUE, THAT COULD MAKE IT VERY DIFFICULT
TO DO A LAPAROSCOPIC OPERATION BECAUSE THEN IT'S
NOT SAFE SOMETIMES TO MANIPULATE THE BOWEL UNDER
THOSE CIRCUMSTANCES.
>> DR. BALDASSANO MENTIONED PERIRECTAL OR PERIANAL DISEASE.
ARE THERE SPECIAL OPERATIONS INVOLVED IN TAKING CARE
OF THAT TYPE OF INFLAMMATORY BOWEL DISEASE?
>> YES, THERE ARE.
IN FACT, MOST PATIENTS WITH, AND THIS APPLIES MOSTLY
TO PATIENTS WITH CROHN'S DISEASE.
PERIANAL DISEASE IS VERY UNCOMMON IN PATIENTS
WITH ULCERATIVE COLITIS, BUT WITH CROHN'S DISEASE THERE
IS A SUBSET.
THERE ARE PATIENTS WHO HAVE PERIRECTAL ISSUES INCLUDING
ABSCESSES, FISTULAS, AND FISSURES.
AND MOST OF THOSE PATIENTS WILL AT SOME POINT REQUIRE
AN EXAMINATION UNDER ANESTHESIA IN WHICH WE CAN
EXAMINE THE PATIENT VERY CAREFULLY IN A PAINLESS WAY
AND DETERMINE THE EXTENT OF THEIR DISEASE.
AND THEN WE CAN TREAT ACUTE PROBLEMS SUCH AS ABSCESSES,
WHICH TYPICALLY INVOLVE AN INCISION AND DRAINAGE
OF THE ABSCESS; SOMETIMES PLACEMENT OF A TEMPORARY DRAIN,
WHICH IS A SILICONE RUBBER TUBE THAT DRAINS THE MATERIAL
FOR A CERTAIN AMOUNT OF TIME TO ALLOW HEALING.
AND THEN THERE ARE FISTULAS IN WHICH CASE WE WOULD APPLY
A SETON OR A SILK THREAD THAT WOULD KEEP THE FISTULA
UNDER CONTROL AND PREVENT INFECTIOUS COMPLICATIONS.
>> AND THIS IS REALLY RESULTING IN MUCH BETTER OUTCOMES.
PROBABLY FIVE OR 10 YEARS AGO THERE WAS A TENDENCY
THAT THE MEDICAL PEOPLE DIDN'T INCLUDE THE SURGICAL
PEOPLE IN THIS PARTICULAR APPROACH.
IT REALLY WASN'T THE TEAM APPROACH THAT WE HAVE NOW.
AND DOING THIS TEAM APPROACH REALLY HAS MADE THE OUTCOMES
OF THIS PARTICULAR PROBLEM JUST MUCH BETTER.
>> I KNOW THAT MANY PATIENTS WORRY ABOUT HAVING TO HAVE
A BAG ON THEIR ABDOMEN OR BELLY WHEN YOU'RE TALKING
ABOUT SURGERY.
WHEN IS AN OSTOMY NECESSARY AND WHAT EXACTLY IS AN OSTOMY?
I'LL TURN THAT OVER TO DR. MATTEI AND NATALIE.
>> WELL, AN OSTOMY IS, LUCKILY, ARE VERY RARELY
REQUIRED THESE DAYS.
IT USED TO BE MUCH MORE COMMON BEFORE ALL OF THE
WONDERFUL AND IMPROVED MEDICATIONS THAT WE HAVE NOW.
BUT GENERALLY WE USE OSTOMIES TO DIVERT THE STOOL
FROM THE AREA OF INVOLVEMENT, EITHER ANOTHER PART
OF THE INTESTINE OR THE PERIANAL AREA.
BUT, AGAIN, I WANT TO STRESS THE FACT THAT THESE ARE VERY
RARELY DONE THESE DAYS AND ONLY FOR VERY EXTREME
COMPLICATIONS OR VERY DIFFICULT TO CONTROL DISEASE.
>> AND AN OSTOMY, BY DEFINITION,
IS AN OPERATION WHERE WE MAKE AN OPENING IN THE SKIN
AND PULL UP A PORTION OF THE INTESTINE,
AND THAT IS WHERE THE CHILD WOULD GO TO THE BATHROOM
INTO THE BAG.
>> I SEE THAT WE HAVE AN AUDIENCE QUESTION.
>> WHAT DO I HAVE TO DO TO TAKE CARE OF IT?
CAN I GO TO SCHOOL?
CAN I SWIM AND PLAY SPORTS WITH AN OSTOMY?
>> YOU CAN DO ALL OF THE ABOVE.
AND SO TO TAKE CARE OF YOUR OSTOMY YOU USE A POUCH
AND A *** THAT GOES ONTO YOUR ABDOMEN AROUND THE OSTOMY
AND THAT COLLECTS STOOL.
YOU'RE ABLE TO GO TO SCHOOL AND LIVE YOUR DAILY LIFE,
INCLUDING SPORTS AND SWIMMING,
ALL WITH AN OSTOMY.
>> WHAT DOES AN OSTOMY LOOK LIKE AND WILL I HAVE IT FOREVER?
>> IN MOST CASES, THE OSTOMIES ARE TEMPORARY.
AND AN OSTOMY IS IN YOUR RIGHT LOWER PORTION OF YOUR
ABDOMEN AND IT'S RED AND MOIST AND IT HAS STOOL
COMING OUT OF IT INTO THE POUCH.
>> AND THE POUCH IS A BAG?
>> IS A BAG.
>> CAN YOU MAKE THOSE BAGS ATTRACTIVE?
>> YOU KNOW, WE DO THE ABSOLUTE BEST THAT WE CAN.
AND I THINK WE'VE ALL LEARNED OVER TIME SORT
OF TRICKS OF THE TRADE TO MAKE OSTOMIES AS MUCH OF A LOW
PROFILE DEVICE, SO UNDER CLOTHES THEY'RE VERY HARD
TO DETECT.
IN FACT, THIS SUMMER AT OUR IBD CAMP WE HAD A FEW
CHILDREN WHO HAD OSTOMIES AND THEY WERE IN THE POOL
SWIMMING WITH EVERYONE ELSE.
AND A FEW CHILDREN WHO KNEW THEY WERE GOING TO GO INTO
SURGERY IN THE FALL WERE VERY CURIOUS TO FIND OUT WHO
THOSE CHILDREN WERE BECAUSE YOU CAN'T PICK THEM OUT IN
THE CROWD, AND THAT'S THE VERY NICE THING.
>> HOSPITALIZATION-- DOES EVERYONE WHO HAVE IBD
GO INTO THE HOSPITAL?
>> CERTAINLY NOT.
SO SINCE I'M AN INPATIENT NURSE PRACTITIONER,
I MOSTLY SEE CHILDREN WHO ARE DIAGNOSED WITH THEIR
INFLAMMATORY BOWEL DISEASE AS INPATIENTS.
THE VERY NICE THING FOR ME IS THAT I CAN TELL THEM,
"JUST BECAUSE YOU ARE DIAGNOSED AS AN INPATIENT
AND YOU ARE VERY SICK AT THE TIME OF DIAGNOSIS DOESN'T
MEAN THAT EVERY SINGLE TIME YOU HAVE A FLARE OF YOUR
DISEASE YOU'LL HAVE TO COME BACK IN."
LIKEWISE, THE GREAT MAJORITY OF OUR PATIENTS ARE
DIAGNOSED AS OUTPATIENTS, AND THEY REMAIN OUTPATIENTS.
SO WHEN THEY ARE FEELING ILL, WHEN THEY DO HAVE A FLARE
OF THEIR DISEASE, THEY WORK MORE THROUGH
THE TELEPHONE SYSTEM.
SOMETIMES HAVING A SICK VISIT WITH THEIR
PEDIATRICIAN OR PRIMARY CARE NURSE PRACTITIONER.
SOMETIMES IN COMMUNICATION WITH THEIR OUTPATIENT GI TEAM
TO MANAGE THEIR DISEASE OUTPATIENTS.
SO CERTAINLY NOT EVERYONE HAS TO COME IN.
BUT IF YOU DO HAVE TO COME IN AND YOU DO HAVE TO BE
HOSPITALIZED, WE'RE PREPARED AND WE CAN HELP YOU MAKE
THAT TRANSITION.
>> DR. BALDASSANO, WHEN WOULD WE--WHEN WOULD
SOMEBODY HAVE TO COME INTO THE HOSPITAL?
>> WELL, THE EXCITING THING IS WITH THE NEW THERAPIES WE
HAVE AVAILABLE NOW, HOSPITALIZATION IS MUCH
LESS FREQUENT.
TEN YEARS AGO OR 15 YEARS AGO,
VISITING THE HOSPITAL, STAYING IN THE HOSPITAL IF YOU
HAVE INFLAMMATORY BOWEL DISEASE WAS NOT UNCOMMON.
NOW, IT'S VERY UNCOMMON.
I MEAN, LAST YEAR AT OUR INSTITUTION WE SAW 1,600 KIDS
WITH INFLAMMATORY BOWEL DISEASE.
MAYBE WE HAVE TWO OR THREE IN THE HOSPITAL AT ANY ONE
TIME TO GIVE YOU AN IDEA THAT MOST PEOPLE NEVER
ACTUALLY GET ADMITTED INTO THE HOSPITAL,
EVEN FOR DIAGNOSIS OR FOR THERAPY.
BUT TIMES THAT WE NEED TO HAVE TO PEOPLE COME
INTO THE HOSPITAL IS IF THE SYMPTOMS ARE SUCH THAT
THEY NEED TO BE CORRECTED QUICKLY.
YOU CAN MAKE PEOPLE BETTER FASTER IF THEY COME INTO
THE HOSPITAL THAN OFTEN TO TRY TO DO THIS AS AN OUTPATIENT.
FOR CERTAIN CONCERNS THAT WE'RE AFRAID MAYBE SURGERY
IS NECESSARY, WE'D WANT THESE PATIENTS TO COME IN
TO WATCH THEM CLOSELY, BECAUSE IF YOU DO NEED TO GET
SURGERY, WE CAN GET IT DONE A LOT QUICKER IF YOU'RE
ALREADY IN THE HOSPITAL.
SO IN CERTAIN INSTANCES, HOSPITALIZATION IS REALLY
VERY NECESSARY.
BUT IN MOST CASES, FORTUNATELY,
IT'S SOMETHING NOWADAYS THAT WE JUST DON'T NEED TO --
I DON'T CONSIDER THAT PART OF THE CARE OF AN IBD PATIENT
TO SAY, "OH, YOU'RE GOING TO SPEND TIME IN THE HOSPITAL."
TWENTY YEARS AGO, I THINK MOST PHYSICIANS WOULD'VE
SAID, "YOU'RE GOING TO SPEND TIME IN THE HOSPITAL."
AND LUCKY NOWADAYS WE DON'T SEEM TO HAVE TO DO THAT WITH
OUR NEW THERAPIES AND OUR NEW APPROACHES.
>> WE HAVE ANOTHER AUDIENCE QUESTION.
>> WHAT IS THE HOSPITAL LIKE IF I HAVE TO GO?
>> THAT'S A GREAT QUESTION.
LINDA, CAN YOU ADDRESS THAT?
>> THE INPATIENT GI UNIT IS A 24-BED UNIT.
IT'S ALL SINGLE ROOMS, SO EVERY PATIENT HAS THEIR OWN
PRIVATE ROOM AND BATHROOM IN THEIR OWN ROOM.
THERE'S A SETUP THERE SO THAT PARENTS CAN STAY OVERNIGHT.
WE HAVE LOTS OF ADDITIONAL ACTIVITIES AND DIVERSIONS,
EVERYTHING FOR PATIENTS WHO ARE IN THE HOSPITAL FOR A WHILE.
WE HAVE SOME CHILD LIFE THERAPISTS,
WE HAVE TEEN ACTIVITIES, WE HAVE A MUSIC ROOM.
WE ALSO HAVE AN EDUCATIONAL CENTER ON THE INPATIENT UNIT
WHERE THE NURSES THAT ARE EXPERTS IN THE CARE OF
CHILDREN WITH IBD STAFF THAT AREA AND HELP WITH
EDUCATIONAL TEACHING FOR THE ENTIRE FAMILY WHILE THEY'RE
THERE, BE IT IN OSTOMY OR ANY OTHER ADDITIONAL CARE
THAT THEY MAY NEED AND EDUCATIONAL STUFF
TO GO HOME WITH.
OUR WHOLE GOAL IS TO WORK WITH THE WHOLE TEAM AND
TRANSITION THESE PATIENTS THROUGH THEIR RECOVERY
AND TO THEIR NORMAL DAILY ACTIVITIES AT HOME.
>> IT'S REALLY THE PHILOSOPHY NOW -- DIFFERENT
THAN, AGAIN, 20 YEARS AGO -- IS WHEN YOU WERE
HOSPITALIZED, YOU WERE IN YOUR BED, AND IF YOU GOT OUT
OF YOUR BED YOU'D GET IN TROUBLE.
>> RIGHT.
>> NOWADAYS IT SEEMS LIKE WE REALLY TRY TO GET KIDS UP
AND DOING THINGS, DOING YOUR HOMEWORK AND HAVING
WHATEVER ACTIVITIES THAT YOU'RE ABLE TO DO
AND TO TRY NOT TO MAKE IT SO THAT YOU ARE STUCK
IN YOUR BED THE WHOLE TIME.
>> RIGHT.
THERE'S PLENTY OF ACTIVITIES.
AND THE NURSES GET PATIENTS' FAMILIES INVOLVED IN EVERY
ASPECT OF THEIR CARE INCLUDING THOSE TYPES
OF ACTIVITIES WHILE THEY'RE IN THE HOSPITAL SO THAT WE CAN
GET THEM HOME QUICKLY.
>> WHAT IS THE EXPERTISE OF THE NURSING STAFF?
DO THEY KNOW ABOUT INFLAMMATORY BOWEL DISEASE?
>> OH, ABSOLUTELY.
ALL OF OUR NURSES GO THROUGH EXTENSIVE TRAINING TO LEARN
ABOUT THE INS AND OUTS OF EVERY SINGLE GI DISORDER
AND NOT JUST INFLAMMATORY BOWEL DISEASE.
BUT THEY ARE CONSIDERED THE EXPERTS IN THE HOSPITAL.
>> SO WHAT--WHO WILL MEET THE FAMILY WHEN THEY COME
INTO HOSPITAL?
WHO DO--WHO IS THE TEAM?
>> AS OUTPATIENTS, FAMILIES ARE VERY USED TO HAVING TWO
PEOPLE AT MOST THAT THEY CONVERSE WITH AND SEE DURING
CLINICAL VISITS, THEIR ATTENDING PHYSICIAN
AND EITHER A FELLOW PHYSICIAN OR A NURSE PRACTITIONER.
WHEN THEY BECOME INPATIENT, WE HAVE A VASTLY HUGE
INPATIENT TEAM THAT'S DEDICATED TO CARING FOR YOUR CHILD.
YOU MAY OR MAY NOT SEE THOSE PEOPLE YOU'VE COME TO KNOW
AND HAVE BUILT A RAPPORT WITH AS AN OUTPATIENT,
BUT THAT DOESN'T MEAN WE AREN'T COMMUNICATING
ALL THE TIME.
AND OUR TEAM IS RATHER LARGE.
WE HAVE AN ATTENDING PHYSICIAN, A FELLOW PHYSICIAN, MYSELF,
I'M ALWAYS ON SERVICE IN THE HOSPITAL.
BUT WE ALSO HAVE A GI SOCIAL WORKER, WE HAVE NUTRITIONISTS,
DIETITIANS, WE HAVE PSYCHOLOGISTS, PSYCHIATRISTS,
CHILD LIFE THERAPISTS.
IT'S A VERY HUGE TEAM.
WE ALSO, BEING A TEACHING HOSPITAL,
HAVE RESIDENT PHYSICIANS WHO ARE LEARNING HOW TO BECOME
PEDIATRICIANS, WHO ARE DOCTORS, BUT ARE LEARNING
HOW TO BECOME PEDIATRICIANS AND ARE ROTATING
ON A GI SERVICE TO LEARN MORE ABOUT GI SPECIFICALLY.
WE ARE A BIT OF AN INTIMIDATING GROUP,
BUT WE TRY TO KEEP OUR SIZES DOWN WHEN WE COME
INTO YOUR ROOM.
BUT AT SOME POINT YOU'LL BE MEETING VERY MANY OF US.
>> DR. BALDASSANO, IF, SAY, DR. MATTEI NEEDS TO BE
CONSULTED, HOW DOES THAT WORK?
HOW DO OTHER SERVICES GET INVOLVED IN THE CARE
OF CHILDREN?
>> WELL, WHEN A CHILD'S ADMITTED INTO THE HOSPITAL
AND ADMITTED TO THE GI SERVICE, TYPICALLY IT WOULD
BE THE GI ATTENDING ALONG WITH THE TEAM
THAT WOULD DECIDE ON, "DO WE NEED TO CONSULT
OR DO WE NEED TO GET THE EXPERTISE OF SOME OF THE OTHER
PEOPLE IN THE HOSPITAL?"
AND WITH INFLAMMATORY BOWEL DISEASE THE MOST COMMON
IS SURGERY.
AND SO IF ONCE WE EVALUATED THE PATIENT,
THEN IF WE FELT THAT WE NEEDED THE SURGICAL INPUT,
THEN WHAT WE WOULD DO IS CALL UP SURGERY,
PUT IN WHAT WE CALL A SURGICAL CONSULT,
THE SURGEONS WOULD COME BY AND DO THEIR EVALUATION.
BEFORE WE WOULD DO THAT, THOUGH,
WE WOULD ALWAYS SPEAK TO THE PATIENT AND THEIR FAMILY
SO THAT THEY'RE EXPECTING AND THEY KNOW WHO'S GOING TO BE
WALKING IN AND THE TYPE OF QUESTIONS THAT'LL PROBABLY
BE ASKED OF THEM.
THEN ONCE THE SURGEONS OR WHATEVER CONSULT SERVICE
WE'VE ASKED TO COME FOR HELP,
AFTER THEY'VE EVALUATED THE SITUATION,
ONCE AGAIN WE GET TOGETHER AS A TEAM AND DECIDE ON
WHAT'S THE BEST CARE FOR THE PATIENT.
>> SO WHAT WOULD THEY EXPECT IF THEY WERE TO MEET YOU,
DR. MATTEI?
WHAT WOULD HAPPEN?
>> WELL, TYPICALLY ONE OF MY RESIDENTS OR FELLOWS FROM
THE SURGERY TEAM WOULD COME BY TO INTRODUCE THEMSELVES
AND TO TALK TO THE FAMILY MOSTLY FOR DATA GATHERING.
AND THEN AT SOME POINT I WOULD COME IN
AND TALK TO THE FAMILY.
AND WE TRY TO USE A VERY GENTLE APPROACH.
YOU KNOW, WE DON'T LIKE TO THE STEREOTYPE OF THE
SURGEON WHO KIND OF COMES IN AND TAKES CHARGE.
I MEAN, WE'RE THERE TO TRY TO HELP AND TO PROVIDE
A SERVICE.
WE TRY TO INVOLVE THE FAMILIES, AND THE PATIENT AS WELL,
IN THE DECISION-MAKING PROCESS SO THAT, YOU KNOW,
I'M FOND OF SAYING THAT WE MAKE THE RECOMMENDATIONS,
BUT THE FAMILIES AND THE PATIENT ACTUALLY MAKE
THE DECISIONS.
AND SO WE TRY TO TALK VERY GENERICALLY ABOUT SURGERY
IN GENERAL SO THAT THEY KNOW WHAT TO EXPECT,
BECAUSE I THINK THAT TAKES A LOT OF THE FEAR OUT
OF THE WHOLE PROCESS.
>> AND NATALIE, WHEN WOULD A FAMILY MEET YOU?
>> WELL, IF DR. MATTEI OR THE SURGEON FEELS AN OSTOMY
IS INDICATED, THEY WOULD EITHER MEET MYSELF OR ONE
OF MY PARTNERS.
AND WE WOULD GO UP AND INTRODUCE OURSELVES.
WE WOULD TAKE A LOOK AT THE CHILD'S ABDOMEN.
EVERYBODY'S BODY IS DIFFERENT.
WE KNOW WE WANT TO SHOOT FOR THE RIGHT LOWER QUADRANT,
BUT WE LOOK AT THE SHAPE OF THE ABDOMEN,
WHAT TYPE OF CLOTHING, WHERE THE CHILD WOULD THINK
THE OSTOMY IS EASY FOR SELF-CARE,
AND TAKE A LOOK AT THAT.
AND THEN WE WOULD PREOPERATIVELY MARK THE SITE
OF BEST LOCATION FOR THE OSTOMY.
>> SO DR. MATTEI, HOW DO YOU DETERMINE WHAT TYPE OF SURGERY
EACH INDIVIDUAL PATIENT NEEDS?
>> WELL, IT REALLY DEPENDS A LOT ON THE PATTERN OF THE DISEASE.
FOR EXAMPLE, IN CROHN'S DISEASE, WE WOULD ADDRESS
THE PARTICULAR LOCATION OF THE BOWEL THAT'S INVOLVED.
IN ULCERATIVE COLITIS, IT'S A LITTLE MORE STANDARDIZED
BECAUSE THE OPERATION INVOLVES REMOVAL
OF THE COLON AND THE ***.
AND THE OPERATION FOR ULCERATIVE COLITIS IS ALSO
CONDUCTED IN THREE PARTS.
THE FIRST PART IS REMOVAL OF THE COLON.
AND THAT'S THE PART THAT CAN USUALLY BE DONE
LAPAROSCOPICALLY WITH A GREAT DEAL OF BENEFIT
TO THE PATIENT.
THE SECOND PART IS THE RECONSTRUCTION OF THE ***
USING A PART OF THE SMALL INTESTINE,
AND THAT'S COMMONLY REFERRED TO AS A J-POUCH PROCEDURE.
AND THEN THE THIRD PORTION IS THE ILEOSTOMY.
AND PATIENTS DO NEED AN OSTOMY TEMPORARILY FOR THIS
OPERATION UNTIL THE NEWLY FORMED *** IS HEALED.
AND SO THAT CAN BE -- SOMETIMES ALL THREE
PARTS CAN BE DONE IN ONE STAGE.
MORE OFTEN IT'S DONE IN TWO STAGES,
WHERE THE SECOND STAGE IS ACTUALLY CLOSURE OF THE OSTOMY.
OR IN RARE CASES, FOR EXAMPLE IN EMERGENCY SITUATIONS,
WE WOULD DO IT IN THREE -- WE WOULD DO EACH OF THOSE
THREE PARTS SEPARATELY AND THAT'S CALLED
A THREE-STAGE OPERATION.
>> DR. MATTEI, IF YOU DO DECIDE TO DO THE THREE-STAGE
PROCEDURE FOR ULCERATIVE COLITIS AND YOU DO NEED
TO HAVE AN OSTOMY, YOU HAD MENTIONED THAT IT WAS
A TEMPORARY OSTOMY, WHAT SHOULD THE DEFINITION
OF TEMPORARY?
IS THAT A DAY, A WEEK, A MONTH?
>> THAT'S A GOOD POINT.
TYPICALLY IT'S ON THE ORDER OF TWO TO THREE MONTHS.
SO WE WOULD TRY TO DO THE OPERATION,
FOR EXAMPLE, AT THE BEGINNING OF THE SUMMER
AND CLOSE IT BEFORE SCHOOL STARTS AGAIN IN SEPTEMBER.
THAT'S A TYPICAL EXAMPLE OF THE TIMING.
>> AND FOR KIDS WHO DO HAVE THIS, I GUESS THEY CALL IT
THE ILEOANAL PULL-THROUGH PROCEDURE FOR PEOPLE WHO
HAVE ULCERATIVE COLITIS.
AND TYPICALLY AS A MEDICAL PHYSICIAN I WOULD CONSIDER
SURGERY WHEN A PERSON IS NOT RESPONDING TO THE MEDICINES.
WHAT'S THE QUALITY OF LIFE LIKE AFTER YOU HAVE THIS
ILEOANAL PULL-THROUGH PROCEDURE?
CAN KIDS EXPECT TO BE REGULAR KIDS?
>> GENERALLY, IT'S QUITE GOOD.
OUR GOAL IS TO HAVE PATIENTS HAVE A NORMAL
LIFESTYLE AFTERWARDS WHERE THEY CAN GO TO SCHOOL,
THEY CAN GO TO WORK, THEY CAN PLAY,
THEY CAN DO EVERYTHING THAT EVERYONE ELSE DOES.
THE PATTERN OF BOWEL MOVEMENTS IS NOT QUITE WHAT
SOME MIGHT CONSIDER NORMAL, BUT IT IS USUALLY VERY ACCEPTABLE.
TYPICALLY TWO TO THREE BOWEL MOVEMENTS PER DAY,
MAYBE SOMETIMES ONE AT NIGHT WITH GOOD CONTROL,
AND THAT'S ALSO AN IMPORTANT PART OF IT.
>> SO THE JOB OF THE LARGE INTESTINE,
THAT PORTION OF THE INTESTINAL TRACT THAT YOU'RE
REMOVING, REALLY MY UNDERSTANDING IS IT HELPS
ABSORBS WATER.
SO AS LONG AS YOU DRINK ENOUGH, AND AGAIN,
IT MIGHT BE ONE OF THE REASONS WHY THE BOWEL
MOVEMENTS AREN'T AS FORMED IS BECAUSE YOU'RE TAKING
THAT SORT OF ORGAN OUT THAT SORT OF ABSORBS WATER,
BUT IT DOES SOUND LIKE MOST PEOPLE HAVE A PRETTY GOOD
QUALITY OF LIFE AFTERWARDS.
>> THAT'S TRUE.
WE TEND TO CONSIDER THE COLON AS AN ORGAN
OF CONVENIENCE AND NOT A TRUE VITAL ORGAN,
AND SO THAT WE CAN GET BY WITHOUT ONE.
BUT THERE MAY BE SOME SLIGHT MODIFICATIONS,
FOR EXAMPLE, DRINKING MORE WATER, THAT SOME PEOPLE
HAVE TO ACCOMMODATE.
BUT IN GENERAL THE LIFESTYLE IS QUITE GOOD AND THAT'S
ALWAYS OUR ULTIMATE GOAL.
>> AND SOME OF THE ADVANTAGES OF THE SURGERY,
AGAIN, THIS IS INDIVIDUAL.
YOU KNOW, EACH PATIENT YOU HAVE TO LOOK AT AND SAY
WHAT'S BEST FOR THEM.
BUT THE ADVANTAGES THAT THE SURGERY,
I GUESS, AFFORDS THE PATIENT IS IT TAKES AWAY THE RISK
OF COLON CANCER AND IT ALSO CAN GIVE YOU THE OPPORTUNITY
TO GET OFF MANY OF THE DIFFERENT MEDICAL THERAPIES
THAT MOST OF THESE CHILDREN ARE ON AT THE TIME WHEN WE
SUGGEST TO TALK ABOUT SURGERY.
>> AND SEVERAL OF THE CHILDREN THAT I SEE ARE
THE SICKEST OF OUR SICK CHILDREN.
AND THEY'VE BEEN SICK FOR SO LONG THAT IT'S HARD FOR THEM
TO REMEMBER A TIME WHERE THEY TRULY FELT WELL.
AND THAT'S THE MOST IMPORTANT BENEFIT TO THOSE
CHILDREN WHO HAVE AN OSTOMY, THAT IT RETURNS THEM TO A STATE
OF NORMAL LIFE THAT THEY REMEMBER BEFORE THEY GET SICK.
>> SO LINDA, NOELLE MENTIONED THAT THE NURSING
STAFF IS EXCELLENT AT TEACHING FAMILIES HOW
TO CARE FOR THEIR DISEASE AND SURGICAL INTERVENTIONS.
WHAT ELSE CAN FAMILIES EXPECT FROM THE NURSING
STAFF WHEN THEY'RE AN INPATIENT?
>> THE NURSING STAFF IN THE INPATIENT UNIT REALLY SERVES
AS A CONDUIT OR A LIAISON BETWEEN A LOT OF THE OTHER
SERVICES THAT WE INVOLVE.
WE HAVE PSYCHOLOGY SERVICES, BEHAVIORAL HEALTH SERVICES.
AGAIN, THERE'S CHILD LIFE SERVICES THAT ARE INVOLVED.
ANYTHING THE PATIENT AND FAMILY REALLY WOULD NEED,
THE NURSE CAN SERVE AS THAT LIAISON AND GET IN CONTACT
WITH THOSE SERVICES FOR THE FAMILY.
>> AND THEY ARE THE PEOPLE THAT ARE AVAILABLE TO THE FAMILY
24 HOURS A DAY, IS THAT CORRECT?
>> TWENTY-FOUR HOURS A DAY.
WE ALSO HAVE SOME NURSING ASSISTANTS THAT ARE ON THE UNIT
AND NURSE TECHS THAT THEY'LL ALSO BE INVOLVED IN THE CARE
OF THOSE PATIENTS AS WELL.
>> AND WHAT IS THE -- WHAT TYPE OF EXPERIENCE DOES
THE NURSING STAFF HAVE?
ARE THEY PEDIATRIC EXPERTS OR--?
>> THEY'RE PEDIATRIC EXPERTS IN THE CARE OF PATIENTS WITH IBD.
THEY'VE RECEIVED EXTENSIVE TRAINING.
SOME OF THAT TRAINING IS DONE ACTUALLY BY OTHER
MEMBERS OF THE TEAM AT DIFFERENT PORTIONS
THROUGHOUT THE YEAR.
THEY HAVE SPENT TIME IN SOME OF THE OTHER DEPARTMENTS,
SUCH AS THE GI SUITE WHERE SOME PROCEDURES AND THINGS
ARE DONE.
AND THEY ALSO ARE THE PEOPLE THAT WILL HELP TO EDUCATE
THE FAMILY AS WELL.
>> SO ARE THERE ANY OTHER WORDS OF WISDOM WE NEED T O--
WE WOULD LIKE TO SHARE WITH FAMILIES ABOUT SURGERY
AND HOSPITALIZATION?
>> WELL, IT'S SCARY TO HEAR YOU HAVE TO COME INTO THE HOSPITAL.
BUT I THINK MOST PEOPLE WOULD SAY WHEN ONCE THEY GET
INTO THE HOSPITAL AND THEY GET TO MEET EVERYBODY ON THE FLOOR
AND THAT WE'RE ALL REALLY WORKING TOGETHER AS A TEAM,
THAT YOU MAKE ACTUALLY A LOT OF FRIENDS.
IT'S NOT THAT YOU LOOK FORWARD TO GO TO THE HOSPITAL,
BUT MOST PEOPLE, WHEN THEY LEAVE, THEY FEEL
SO MUCH BETTER.
AND MANY OF THE FAMILIES THAT, YOU KNOW,
WE WERE SAYING, "MAYBE YOU NEED TO COME INTO THE HOSPITAL
TO GET THINGS BETTER."
AND AT FIRST THEY'RE A LITTLE BIT RESISTANT.
AFTER THEY'VE BEEN IN THE HOSPITAL, PEOPLE ARE HAPPY
THAT THEY WENT IN AND EVEN SOMETIMES WISHED THEY
WOULD'VE GONE IN A LITTLE BIT SOONER SO THEY COULD
GET BETTER FASTER.
>> THANK YOU PANEL FOR PARTICIPATING
IN TODAY'S EPISODE.
THIS WAS A VERY INTERESTING AND ENLIGHTENING DISCUSSION
ON HOSPITALIZATION AND SURGERY.
AND THANK YOU TO ALL OF YOU FOR JOINING US TODAY FOR OUR
EDUCATIONAL VIDEO.
ONCE AGAIN, IF YOU HAVE QUESTIONS THAT WERE NOT
ADDRESSED DURING THE SESSION,
PLEASE DIRECT THEM TO YOUR HEALTHCARE PROVIDER.
THERE ARE ADDITIONAL RESOURCES AVAILABLE TO YOU
AT THE END OF THIS DVD.
THANK YOU AGAIN FOR JOINING US FOR THIS EDUCATIONAL PROGRAM.