Story about Crohn's disease .

My UC experience

Dec 2, 2


I AM A PSYCHOLOGIST WHO IS OFFERING HELP AND ADVICE TO ANYONE IN NEED OF IT. THIS IS MY UC STORY: I WAS FIRST DIAGNOSED WITH THE DISEASE 9 YEARS AGO, I HAD A SEVERE CASE OF UC AND LOST A LOT OF BLOOD CONSTANTLY HAD TO HAVE BLOOD TRANSFUSIONS AND WAS PLACED ON REMICADE, CORTISONE, IMMURON, ASACOL TABLETS, AS WELL AS ASACOL ENEMAS EVERY NIGHT. FOR THE FIRST 5 YEARS I WAS HOSPITALIZED FOR LONG PERIODS OF TIME EVERY 1-2 MONTHS. I LOST AROUND 20 KILOS AND LOST MY APPETITE FULLY AND IF I WAS HUNGRY I WOULD BE TERRIFIED TO EAT BECAUSE I DIDNT WANT TO END UP RUNNING TO THE BATHROOM MORE THAN I ALREADY WAS (THEY FORCED ME TO DRINK ELEMENTAL TO BE ABLE TO OBTAIN SOME NUTRIENTS) , I HAD GOT UP TO AROUND 15 BATHROOM VISITS PER DAY, I WAS SEVERLY DEHYDRATED AND WAS ALWAYS HOOKED TO IVS EVEN WHEN I WAS AT HOME. EVEN WHEN I WAS DISCHARGED FROM THE HOSPITALS I DIDN'T SEE MY FRIENDS OR GO OUT BECAUSE I WAS TOO WEAK AND IN TOO MUCH PAIN TO DO ANYTHING, BUT THAT ONLY LASTED THE FIRST 2 YEARS BECAUSE AFTER THAT I LEARNED TO HIDE MY PAIN AND PRETEND I WAS OK BECAUSE MY FRIENDS AND TEACHERS DIDN'T UNDERSTAND MY SITUATION AND TREATED ME LIKE A LEPER. I ALSO DEVELOPED INFLAMMATIONS IN MY JOINTS (ON AND OFF) WHICH WERE PAINFUL AND MADE IT EVEN HARDER TO MOVE AROUND. AFTER THE FIRST 5 YEARS THE REMICADE STOPPED WORKING AND I BEGAN DETERIORATING QUICKLY, THE DOCTORS TRIED A LOT BUT DIDN’T KNOW WHY NOTHING WAS WORKING ANYMORE, THEY HAD WANTED TO TAKE ME TO HAVE AN EMERGENCY COLECTOMY, BUT BEING UNDERAGE (TEENAGER) AT THE TIME MY PARENTS REFUSED TO LET ME GO THROUGH WITH THE SURGERY BECAUSE THE RISKS WERE TOO HIGH AND THE ODDS OF ME SURVIVING THE SURGERY WERE VERY SLIM (MY FATHER WAS A DOCTOR SO HE UNDERSTOOD MY CONDITION WELL). AFTER THAT I CHANGED DOCTORS, MY SECOND DOCTOR THEN DISCOVERED I HAD DEVELOPED AN INFECTION KNOWN AS C.DIFF, WHICH IS WHY SOME OF THE TREATMENTS HADN’T WORKED BECAUSE THEY WERE ONLY TRYING TO TREAT THE UC UNAWARE OF THE C.DIFF. AFTER THE DISCOVERY OF THE C.DIFF I WAS PLACED ON FLAGYL TILL IT SUBSIDED. I ALSO BEGAN DRINKING SAGE EXTRACT, FENUGREEK TEAS (MADE FROM THE SEEDS NOT BOUGHT READY-MADE), AND ATE A LOT OF YOGHURTS, POTATOES, AND RICE WHICH GREATLY IMPROVED MY HEALTH. I WAS ALSO GIVEN VITAMINS AND IRON PILLS TO TAKE DAILY ON TOP OF THE PILLS I WAS TAKING FOR MY UC. THE SEVENTH YEAR (AFTER MY DIAGNOSIS) I WENT A WHOLE YEAR WITHOUT EXPERIENCING A SINGLE EPISODE, BUT THEN THE 8TH YEAR I EXPERIENCED EPISODES ON AND OFF DURING WHICH I USED THE ENEMAS AND WATCHED MY DIET TILL THE FLARE UPS PASSED (NEVER TOOK REMICADE, CORTISONE, OR IMMURON ANYMORE, THEY HAD STOPPED WORKING ON ME). EVERY ONCE IN A WHILE I EXPERIENCE FLARE UPS DURING PERIODS OF TIME WHEN MY DIET ISN’T GOOD AND I EXPERIENCE STRESS, BUT MY CONDITION IS A LOT BETTER THAN IT WAS YEARS AGO AND MY FLARE UPS, ALTHOUGH STILL PAINFUL ARE A LOT LESS PAINFUL THAN THEY USED TO BE. I HOPE MY STORY MIGHT HELP YOU AS MUCH AS POSSIBLE AND I AM AVAILABLE FOR ANY QUESTIONS THAT YOU MAY HAVE :)   

 

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2 comments
1

Sounds rough. Glad you have been doing so much better in recent years. I can relate to much of what you have experienced. Having IBD can be profoundly isolating and difficult for others to understand.

Commented 7 years ago Kristin 11
0

This desease is very Hard. You're  a champion. I 'm suffering uc from fourteen years. I had a colestomy Four years ago. Now i don't need medicine but i have bad days yet.

 

Commented 7 years ago Mode Benavente García 10

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