CROHNS MOM

About me:

WE ARE JUST A MOM AND DAD,WHO WOULD DO ANYTHING TO GIVE THERE SON A NORMAL LIFE.THIS IS OUR STORY,OUR LIFE,AS YOU CAN TELL ITS NOT BEEN EASY,WE HAVE ALWAYS TOLD DAVID YOU CAN DO WHATEVER YOU WANT WITH YOUR LIFE JUST LIKE ANYONE ELSE,DONT LET THIS ILLNESS STOP YOU,HMM,IT REALLY PISSES ME OFF TO HEAR PEOPLE SAY THIS ILLNESS IS MANAGABLE,THEY DONT TALK ABOUT THE 30% WHO HAVE EXTREAM CASES,YEAH THE DESEASE IS TREATABLE ITS THE SIDE AFFECTS THAT ARE GETTING YOU, WE ARE LIVING DAY TO DAY TRYING TO HELP OUR SON WHO WAS DIAGNOSED MORE THEN 13 YEARS AGO WITH ULCERATIVE COLITIS,NOW ITS FULL BLOWN CROHNS,HE HAS BEEN LIVING WITH IT HIS ENTIRE LIFE THIS IS OUR STORY,WHAT WE HAVE AND ARE STILL DEALING WITH,AND IT HASNT BEEN FUN,ASKING THAT EVERYONE HELP SUPPORT RESEARCH ON THESE NASTY ILLNESSES(www.ccfa.org)WAY TO MANY OF OUR YOUNG PEOPLE ARE BEING AFFECTED BY THESE TERRIBLE ILLNESSES,WE HAVE MET SO MANY PEOPLE WITH IT OR THEY KNOW SOMEONE WHO HAS IT,I KNOW WHEN WE FOUND OUT OUR SON HAD IT I THOUGHT TO MYSELF IT WAS AN OLD PEOPLE DESEASE,NOT ITS ATTACKING OUR YOUNG AT A VERY FAST PACE,THATS JUST SCAREY,SOME ARE VERY MILD,OFTEN LIKE IBS,THEN YOU HAVE CASES LIKE MY SON WHO ARE EXTREAM,WE HAVE ALMOST LOST HIM A FEW TIMES BECAUSE OF IT,I DO BELIEVE HE WAS BORN WITH ITLOOK AT HIS CHIN HE CAME HOME WITH AN ULCER ON IT ,JUST NOT DIAGNOSED FOR 10,YEARS NOW HE HAS CROHNS BECAUSE THESE 2 ILLNESSES ARE SO CLOSE TOGETHER ITS HARD TO TELL THEM APART TILL YOU SHOW OTHER SYMPTOMS,JUST ALL THE SIDE AFFECTS THAT ARE HAPPENING NOW,AS OF TODAY HE IS NOT DOING GOOD,HE HAS STARTED TO BLEED OUT AGAIN,CAN BARELY MOVE,CONSTANT LOW GRADE FEVER,AND PHISHERS,VOMITING,AND HAS CELLITIS ON HIS BELLY WHICH IS NOT PRETTY AT THE MOMENT,HIS BONES ARE SO STIFF,SOME DAYS NEEDS HELP TO GET UP,SO SAD,SO YOUNG,OUR STORY STARTS WHEN DAVID WAS 15 MONTHS OLD,TOOK HIM TO BOSTONS CHILDRENS HOSPITAL WHERE THEY FAILED TO FIND OUT WHAT WAS WRONG WITH HIM,HIS FEVERS SO HIGH THEY THE ER PUT HIM IN A TUB OF ICE,THEN GAVE HIM A SPINAL TAP,OH JUST MUST BE SOME TYPE OF VIRUS,TAKE THESE AND GO HOME,WOW HE SHOWED THE CLASSIC SYMTOMS AT THAT TIME OF U/C,THE RASH THAT LOOKED LIKE ULCERS WERE EATING HIM FROM THE INSIDE OUT,LOW GRADE FEVERS,CONSTANT VOMITING,WELL CONSTANT TRIPS TO NUMEROUS HOSPITALS AND ERS LATER ABOUT 10 YEARS DAVID BLED OUT ONE AM, HIS BLOOD COUNT WENT TO A 2, DOCTORS WERE RUNNING AROUND POKING THERE FINGERS TO MAKE SURE THE MACHINE WAS WORKING,THIS IS WHEN OUR WHOLE WORLD CHANGED,AND OUR HEARTS FELT LIKE THEY WERE BEING RIPPED OUT,THEY WANTED TO LIFE FLIGHT HIM TO GALVESTON,I COULDNT DO IT,HE WALKED IN THERE WITH ME,HE WILL WALK OUT WITH ME,THEY DIDNT LIKE THAT MUCH,I KNOW MY SON,I WASNT GOING TO LEAVE HIS SIDE,AND WE DIDNT,I REMEMBER THE PHONE CALL TO LYNN,AND THE DRIVE HOME WHERE LYNN AND I WAS MEETING UP,I COULD BARELY GET THE WORDS OUT,TRYING TO KEEP MY FOOT ON THE GAS PEDAL THEY WOULD NOT STOP SHAKING,THATS WHERE THEY MADE THE 1ST REAL DIAGNOSES OF WHAT WAS WRONG,GREAT HOSPITAL,HE WAS SO WEAK THE TESTS THEY DID ON HIM WERE AWFUL THEY COULDNT SEDATE HIM AT ALL,SO THE TESTS HAD TO BE DONE,ITS SO SAD WE HAD TO HELP HOLD HIM DOWN DURING A FEW OF THESE TESTS,YEAH WE BOTH CRIED FOR HIM AS A MOM AND DAD,OUR HEARTS BROKE,THE AMOUNT OF STRESS YOU JUST CANT EXPLAIN IT OR THE FEAR ITS JUST UNBELIEVABLE,THIS IS LITERALLY WHERE OUR HAIR STARTED TURNING GREY,I GOT THIS STREAK OF WHITE HAIR THATS PERMENAT,THATS FEAR AND SADNESS,I HAVE DATED PHOTOS WHERE YOU CAN SEE IT HAPPENING, HE JUST LOOKED AT US,ILL NEVER FORGET THE TERROR IN HIS EYES AND HIM ASKING FOR US TO HELP HIM,ALL WE COULD TELL HIM WAS IT WILL BE OVER IN A MINUTE,THATS SOMETHING THAT STAYS WITH YOU A LIFE TIME,HE WAS PUT ON SOME STRONG MEDS ALL THAT COME WITH SIDE AFFECTS, DRUGS LIKE 6MP AT THE TIME,ALL THE 5 ASACOL DRUGS,TOLD IT WAS A CANCER DRUG (6,MP)AND HIS HAIR MIGHT FALL OUT,SO MANY OTHER DRUGS,THE PREDISONE THAT MADE HIM GO FROM 56 LBS TO 200,MADE HIS EYES WEAK,HIS BONES WEAK,WHATS A PARENT TO DO,BUT PRAY THAT IT WORKS AND HE GETS SOME RELIEF FROM IT,HE ALSO SPENT ALOT OF TIME IN THE HOSPITAL SCHOOL,THE MARDI GRAS THATS HELD THERE EVERY YEAR CAME BY TO SEE ALL THE KIDS AT THE HOSPITAL TO TRY TO CHEER THEM UP,THEY WANTED US TO STAY AT THE RONALD MCDONALD HOUSE ALSO,JUST COULDNT LEAVE HIM,BUT THAT IS A NICE PLACE FOR PARENTS TO GO,YOU KNOW CHILDRENS HOSPITALS ARE THE SADEST PLACES,BUT YOU ALWAYS SEE SMILING KIDS,DEFINANTLY GODS GIFTS,WE WERE TRANSFERED TO TEXAS CHILDRENS HOSPITAL WHERE HE WAS TREATED LIKE A KING,THEY TOOK MORE PICTURES,LOWER GI'S ABOUT A YEAR LATER THE GI'S SHOWED A INCREASE IN GROWTH, THAT WAS SCAREY THEY WERE SO BIG,THE LAST 2 TESTS WERE ONLY 30 DAYS APART, WE WERE TOLD WE NEED TO HAVE HIS LARGE COLON TOTALLY REMOVED,BECAUSE IN 5 YEARS WITH NO QUESTIONS ABOUT IT HE WILL HAVE COLON CANCER,WELL WE MADE THAT DICISION,AFTER ANOTHER BLOOD TRANSFUSION,WE PLANNED THE SURGREY WE JUST THOUGHT WE WERE READY TO SEE THAT,WHEN HE CAME OUT OF THAT HE STILL HAD THE TUBE IN HIS MOUTH AND HAD TAPE ON HIS EYES,AND THIS HUGE BAG THAT WAS HANGING OFF HIS TUMMY,OSTOMY BAG I ALMOST BROKE AT THAT POINT,HIS FATHER JUST HELD ME,THOUGHT HOW THE HELL AM I GOING TO CARE FOR THAT ID HAD NEVER SEEN ANYTHING LIKE THAT BEFORE,OH AND ANOTHER THING MY SON WENT INTO SURGREY WITH BRIGHT BLUE EYES AND CAME OUT WITH ONE GREEN EYE AND ONE BLUE EYE, WHAT MADE THAT HAPPEN?THEY DID NOT PREPARE US FOR THAT,I THOUGHT IT WOULD BE THIS TINY CUT ON HIS ABS,NOT IT WAS FROM HIS STERNUM TO HIS PELVIC,WELL WE ALL WENT HOME AND HAD TO LIVE WITH THE SCREAMS OF CHANGING THE BAGS,DURING SURGREY THEY PUT A BAG THAT WAS TO BIG AROUND THE STOMA,WELL THE ACID THAT COMES OUT ATE HIM UP,SO EVERYTIME I CHANGED THAT OSTOMY BAG HIS SCREAMS WERE UNBELIEVABLE,WELL EXACTLY 1 YEAR FROM THAT DAY HE WENT IN AND HAD THE OSTOMY REVERSED,THEY BUILT THE J POUCH INSIDE TO HELP,WELL HE HAS HAD NO RELIEF,GETTING POUCHITIS INFECTIONS THAT MAKE HIM WASTE AWAY,WAS PUT ON THE REMECADE TREATMENT WAS GOING GOOD TILL ABOUT THE 6TH TREATMENT AT HOME,HE WENT INTO(ANAPHAYTIC) SHOCK,THANK GOD I HAD A NURSE THAT CAME IN AND DID THAT,THAT SCARED THE CRAP OUT OF ME,911 WAS CALLED WE HAD HIM BACK BEFORE THE AMBULANCE GOT THERE,THE NURSE JUST LOOKED AT ME LIKE DO WE CONTINUE WITH THE TREATMENT,IM LIKE YOU GOT ONE FREAGGIN MINUTE TO GET THAT IV OUT OF HIS ARM OR ILL DO IT,OR ANOTHER IV TREATMENT AT HOME HE HAD TO ENDURE WAS EVERY 2 HOURS THATS THE ONE I WOULDNT LET NO ONE HELP ME WITH,I WAS SO SCARED ID GO IN THERE AFTER NOT GETTING ANY SLEEP AND WONDER TO MY SELF WHAT IF I PULL INSTEAD OF PUSH,EARLY AM HOURS WERE THE WORSE HE WOULD BE SLEEPING SO PEACEFULLY,ACTUALLY EVERYONE IN THE HOUSE WAS BUT ME,BUT WELL WORTH THE EFFORT,AND IF I HAVE TO DO IT AGAIN I WILL,THEY DID TRAIN ME ON THAT ONE,ALSO GAVE ME THIS BAG OF ADRENANLINE AND A HUGE NEEDLE AND SAID IF HE STOPS BREATHING JUST SHOVE THIS NEEDLE INTO HIS CHEST AS HARD AS YOU CAN,IM THINKING YOU ALL SHOULD HAVE SEEN THAT NEEDLE,HOW THE HELL COULD I DO THAT,BUT I KNOW I WOULD HAVE HE IS MY SON,WELL WE SIT HERE AND WE ARE RELIVING EVERYTHING AND A LITTLE BIT MORE,NOW OUR SON HAS(SPELLING) RUMATOID ARTHRHITIS,HE IS 22 NOW AND CAN NO LONGER BEND HIS WRISTS,HIS BACK AND LEGS/HIPS HAVE IT NOW,HE IS GETTING WORSE AND WE PRAY EVERYDAY THAT IT STOPS,ITS A VERY UNFAIR ILLNESS,AND I KNOW EVEN WHEN HE FEELS LIKE HIS WORLD IS CRUMBLING DOWN AND IT FEELS SO DARK AROUND HIM WE ARE THERE FOR HIM,HE ALSO HAS A GREAT GIRLFRIEND THAT STANDS BY HIM,I WILL DO ANYTHING FOR MY SON. WELL HERE I AM AGAIN,9-17-09,IT JUST NEVER STOPS,WENT TO ER THEY ADMITTED HIM STAT,HAD SURGREY,BAD INFECTION,SURGEON SAYS HE IS A VERY SICK YOUNG MAN(WE KNEW THIS)AND IS GOING TO NEED SOME EXTREAM MEDICAL CARE AND MEDS SINCE IT IS CROHNS SAYS THEY COULDNT DO ANYTHING ABOUT THE PHISHERS RIGHT NOW,THEY ARE TO CLOSE TO HIS SPINSTER MUSCELS,IF THEY REACH IT,IT WILL DESTROY IT,AND HE WILL HAVE TO WEAR AN OSTOMY THE REST OF HIS LIFE.HE IS FEELING GOOD THIS WEEKEND,LOOKS GOOD,BUT WE KNOW LIKE THE DR SAID THE SURGREY WAS JUST A TEMPORARY FIX,SO WE KEEP PRAYING,WELL HE WE ARE 9-26-09 KNEW IT WOULDNT BE LONG,JUST LIKE THEY SAID TEMPORARY,HE HAS BEEN SICK ALL WEEKEND KEEPING NOTHING DOWN AND IN, TO WEAK TO GET UP AND MOVE,TERRIBLE STOMACH PAINS THAT ARE RIGHT UNDER HIS SCAR,THE LAST TIME HE HAD A SCAN OF THAT AREA THEY SAID IF IT CONTINUES WE WILL HAVE TO OPEN YOU UP ALONG THE SCAR VERY MAJOR STUFF HERE,SO ITS MOST LIKELY THE SCAR TISSUE BUILDING UP,WELL WE GOT 9 DAYS OF DAVID LOOKING HAPPY AND BEING A TYPICAL 22 YEAR OLD,THAT WAS NICE,TRYING TO FINISH THE PAPER WORK TO GET HIM HELP BUT NO ONE WILL TALK TO ME,BECAUSE HE IS 22,BUT WHAT WE DONT GET IS THEY WANT TO USE OUR INCOME TO GO BY TO GET HELP,WHATS UP WITH THAT,ITS NONE OF THERE BUSSINESS WHAT WE MAKE,AND THATS WHAT IS KEEPING HIM FROM GETTING ANY HELP.WELL TILL THE NEXT ISSUE COMES UP.10-1-09,WELL WE HAVE FINALY GOT ALL THE PAPER WORK DONE,I CAN NOW TALK WITH PEOPLE ABOUT DAVIDS MEDICAL,HE SIGHNED AND I DID SOME PAPER THAT GIVES ME PERMISSION TO SPEAK WHEN HE CANT,THIS ARTHRITIS CRAP REALLY SCARED HIM TODAY HE COULDNT GET UP,HE IS WONDERING IF HE WILL BE IN A WHEELCHAIR,DAMN IT THAT HAS TO BE SO SCAREY FOR A YOUNG MAN LIKE HIM.OCT.5TH-09, BEEN GETTING WORSE BY THE DAY,WE BELIEVE THE STAPH IS BACK WITH A VENGENCE,HE CAN HARDLY MOVE NOW,I HAVE TO OPEN ALL HIS BOTTLES OF LIKE GATORADE-WATER,BECAUSE HE CANT TURN THE LIDS,ITS FUNNY HOW PEOPLE TAKE THE SMALLEST THINGS FOR GRANTED,MEDICAL PROGRAMS ARE TAKING THERE SWEET TIME HELPING HIM,HE NEEDS SOME RELIEF NOW,HE WAS UP ALL NIGHT LONG,IM PRAYING THAT THE PHISHERS HAVENT REACHED THE SPOT THAT COULD DESTROY WHAT HE HAS LEFT, WELL ITS NOVEMBER 15TH,DAVID HAS BEEN OUT OF HOSPITAL 4 1 MONTH TODAY,NONE OF THE MEDS ARE WORKING,HAS TO BE SOMETHING OUT THERE,HE BLEEDING SO HEAVILY,WE ARE STRESSED,HE DOES HAVE AN APPOINTMENT WITH A GASTROINTEROLOGIST ON THE 18TH,IF WE CAN WAIT,DONT KNOW,HE HASNT ANY STRENGTH LEFT,IM FEARING HE IS BECOMING ANEMIC,HE HAS BEEN HAVING CHEST PAINS ALSO,EVEN THE PAIN MEDS ARE NOT WORKING ANYMORE,HE IS PUSHING PEOPLE AWAY THAT CARE ABOUT HIM,THAT WORRIES ME,BUT SHIT I CAN SEE WHERE HE IS THINKING HE CANT GET A FREAKING BREAK,30 DAY BREAK COME ON HE NEEDS MORE TIME TO BE THE YOUNG MAN HE IS,SO YEAH I CAN SEE WHERE HIS THINKING IS HEADING,BUT I WILL CONTINUE TO TELL HIM TO THINK IN A POSITIVE LIGHT. ......................................................................................................................

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