Posted 6/18/2009 2:57 PM (GMT 0)
I HAVE HAD CROHN'S MOST OF MY LIFE, SINCE AGE 11, MANY SURGERIES, (OVER 40 YEARS, MISDIAGNOSED TILL I WAS 16. THEY WERE SURE I WAS ANOREXIC! I SHOULD HAVE SUED AS THEY STUCK ME IN THE PSYCH WARD, THAT'S WHERE THEY PUT EATING DISORDERS BACK IN THE 70'S, AND I WAS IN THERE 3 MONTHS, AFTER 2, AND AFTER MUCH PAIN ON MY RIGHT SIDE, THE TESTS FINALLY REVEALED IT WAS NOT IN MY HEAD BUT WAS, INDEED CROHN'S WHICH HAS GRADUALLY GOTTEN WORSE. I ONLY HAVE APPROX 15 FEET LEFT OF MY SMALL, WHICH IS WHERE IT IS, CONTAINED IN THE SMALL INTESTINES, HAD ONE SURGERY AT CLEVELAND CLINIC WHICH IS THE BEST IN THE USA, BUT MY LAST SURGERY, WHICH THEY SAID MY INTESTINES WERE PERFORATING SO I COULDN'T TAKE AN AMBULANCE TO CLEVELAND OR I SHOULD SAY, THE HOSPITAL HERE IN ROCHESTER, NY, WOULDN'T ALLOW IT, SAID IT WAS TOO RISKY BUT THEN I SAT IN MY HOSPITAL BED FOR 2 DAYS BEFORE THEY FINALLY DID THIS SO CALLED "EMERGENCY SURGERY". I WILL NEVER GO TO THAT HOSPITAL AGAIN FOR ANY SURGERIES. I WAS ORIGINALLY IN FOR 9 DAYS, WENT HOME TO GET HEALED, AFTER A MONTH, I WAS NOT GETTING ANY BETTER AND I HAD THIS VERY BAD PAIN IN MY PELVIC AREA, LOWER RIGHT SIDE SO I MADE AN APPT WITH THE SURGEON, HE NEVER LOOKED AT ME, OR EXAMINED ME, SAID I WAS STILL HEALING AND TO COME BACK IN 2 WEEKS IF I WASN'T ANY BETTER. WELL, LIKE MOST OF US, WE KNOW OUR BODIES FROM HAVING THIS FOR SO MANY YEARS SO I CALLED MY GI DR WHEN I GOT HOME, TOLD HER THE WHOLE STORY, SHE ORDERED ME TO COME TO THE HOSPITAL IMMEDIATELY. I MET HER IN ADMITTING WHEN EVERYONE HAD GONE HOME BUT SHE HAD THE ADMITTANCE PAPERS FOR ME TO SIGN AND SHE THEN SENT ME TO GET A CT SCAN BUT NOT THE USUAL, AS THE RADIOLOGIST DOCTOR INSERTED A WHITE RUBBER TUBE, A LONG ONE FROM THE LEFT SIDE OF MY BODY AND PUSHED IT THROUGH, PIERCING MY BLADDER, UTERUS, AND PROBABLY OTHER ORGANS. I WAS IN HORRIBLE PAIN AS HE WAS ALSO MOVING AROUND ALL THE INTESTINES THAT HAD BEEN RESECTIONED AND STRICTURED PLASTIED A MONTH PRIOR TO THIS. THIS TUBE WAS USED TO DRAIN THE "FLUID" THAT WAS IN THE PELVIC AREA AS THEY DIDN'T WANT TO GO BACK IN AND open ME UP AGAIN. THE RADIOLOGIST/DOCTOR SHOWED ME THIS LONG NARROW PLASIC BAG FULL OF DARK DARK FLUID. I SAID TO HIM, "WHAT IS THAT??" AND HE SAID, "THAT IS MONTH OLD BLOOD FROM YOUR SURGERY A MONTH AGO. HE THEN SAID THERE WERE 220ccs OF THIS OLD BLOOD, FILLED THIS BAG RIGHT UP. THEY RUSHED ME TO A ROOM AND IMMEDIATELY STARTED TO HANG BAGS OF ANTIBIOTICS TO GO INTO MY IV. AT THIS TIME, I STILL DIDN'T HAVE A CLUE HOW CLOSE I COULD HAVE BEEN AT DEATH AS THEY CALLED IT "SEPTIC" OR THE INFECTION COULD HAVE GONE THROUGH MY WHOLE BODY IF I HAD WAITED ANOTHER FEW DAYS OR A WEEK, CAUSING DEATH. I WAS VERY FORTUNATE THAT THIS HADN'T HAPPENED YET. THE CULTURE CAME BACK NEGATIVE. I HAVE TO ADMIT I WAS A WRECK FOR THREE DAYS TILL THE RESULTS WERE IN. MY GI DOCTOR WAS CONFIDENT WE GOT IT OUT OF ME IN TIME AS I HAD NO FEVER OR OTHER SIGNS OF INFECTION. SO THE NEXT DAY AFTER THIS PROCEDURE, MY INCOMPIDENT SURGEON CAME TO MY ROOM AND WAS TELLING ME AS LONG AS I WAS IN THE HOSPITAL, HE WANTED ME TO HAVE A BARIUM SWALLOW (THEY USED TO CALL THEM UPPER OR LOWER GI SERIES). I SAID "NO WAY, YOU WANT ME TO SWALLOW THIS LEAD-LIKE BARIUM AND TAKE A CHANCE THAT IT WOULD DO MORE HARM IN THERE AS I'M STILL HEALING FROM THE RESECTIONS AND STRICTURE PLASTIES?" BUT HE INSISTED I TAKE THIS TEST, THAT I AM HEALED MORE THAN I KNOW AND I TOLD HIM, AFTER THEY DRAINED ME, I WAS BACK TO "SQUARE ONE", FELT LIKE I JUST GOT OUT OF THAT OPERATING ROOM ON TO THE RECOVERY ROOM WITH THE SAME EXCRUCIATING PAIN I HAD A MONTH BEFORE. JUST LIKE I RELAPSED. HE THEN SAID, THAT I REALLY NEEDED TO DO THIS TEST TO SEE HOW THIS HAPPENED. I AGAIN SAID, NO, I'M NOT HAVING THAT TEST AND THEN HE GOT UP, PUSHED HIS CHAIR ACROSS THE FLOOR AS IT HIT THE WALL, NEVER SAYING ANOTHER THING AND I NEVER SAW OR HEARD FROM THAT SURGEON AGAIN. MY GI DR. CAME IN SHORTLY AFTER HIS VISIT AND AGREED WITH ME, I DID NOT NEED THAT TEST AT THIS TIME. I TOLD HER WHAT HE HAD SAID, THAT I SHOULD HAVE THIS TEST TO SEE WHY AND HOW THIS HAPPENED. SO AFTER ANOTHER 9 DAYS IN THAT HOSPITAL (18 DAYS ALL TOGETHER), I finally went home, so sick and weak but I had it in my mind, when I'm stronger, I am going to see my surgeon at the Cleveland Clinic, who told me last time, "don't let anyone from the Rochester, NY area touch you! You have severe crohn's and they don't see enough of this to be good at doing surgery on me. Told me, to get an ambulance and I wanted to, but they kept telling me "you are perforating and you would never make it alive there" which was BS as I sat in my hospital room for TWO days before this horrible surgeon finally did my surgery. My surgeon in Cleveland had a CT scan ordered for me when I got there, very different from the ones here as I had to drink this very thin liquid that didn't bother me at all, later he told me there was a very small amount of barium in there but it was like water going down. He informed me that this test is much better than the old "barium swallow" and it has replaced it there and should be in other hospitals soon (not mine). I was told I would get the dye in my arm, like I do with any CT scan that I have had. So after this test, I went back to the waiting room, my surgeon calls me in and says, "For what he had to do (thinking it was perforating), he was in there quick and out of there quick so to me he did an OK job." I said, "HOW DID THIS MONTH OLD BLOOD GET THERE?" And he said, "no one told you in Rochester?" I said no and I told him this quack of a surgeon wanted me to swallow the lead-type barium "to see how this happened". Well, he said "he nicked you on the way out" and I said WHAT? and he told me he was in a hurry but he also told me, of course this dr knows what he did. I said not even my GI dr would tell me how this happened and why do you think he wanted me to have the barium test if he KNEW how this happened? He had no idea and I said, do you think he was trying to cover it up or make me worse so that I would require emergency surgery. He didn't know but said, never take that test one month post op! He was referring to the Barium Swallow. I said, I know better. My Cleveland surgeon started to dictate a letter to my GI dr in front of me and copied me. He actually said "Thank you for saving Judy's life" as you know, even a few more days, and that infection could have been all through me and I wouldn't have survived. I had to stay 9 more days with strong narcotics as that tube really moved everything around and I was in such bad pain, I couldn't go home, like I said, it felt like I just got out of the surgery again. I was livid and this was three years ago, as I waited to get better down there as I know they did some damage with that tubing. I know there has to be adhesions and I still had some pain in that whole area. Well, there are other problems now from this botched surgery and I am looking into seeing a medical lawyer as this man never came back to my room, never apologized and to think he wanted me to swallow that horrilble lead-like barium "to see how this happened" when he KNEW how this happened, my Cleveland surgeon said, YES for sure he knew how this happened and so did all the other drs I have there, not even my wonderful GI dr who is a female and is over all the GI Doctors in this hospital, would tell me how this happened. She is the one that told me how "GREAT" this colo-rectal surgeon was so I trusted her, though I didn't want it there, I wanted to take that ambulance to Cleveland and take the so-called risk, like I said, he waited almost 2 days before doing my surgery! So I have been advised by many, to at least talk to a lawyer about this as there are still many problems in that area. I waited because I knew with my other surgeries, it could take a few years to heal but these complications from sticking that tubing in me have caused lasting problems. I just wish I had done it a year sooner. I just want to get him back for his awful unprofessional behavoir. I'm still wondering why he wanted that test after the month-old blood was drained and all I can come up with is he was trying to cover something up and possibly causing me more harm to take the blame away from him. I'm telling you this story, so that something like this NEVER happens to you! We all know we have to be are own advocates as we are just a number to many doctors. Well, I have vowed never to have surgery in that hospital again, even if I need emergency, there are other good hospitals in this area if I had to have this life or death surgery again. But I'm starting to have more problems, not sure if it is from the last surgery but I will be going back to Cleveland for my next appointment as he again told me "don't let anyone there touch you, they do not have the experience like they do in Cleveland, as that is all he sees there, are mostly Crohn's patients. So, if this helps just one person, it was worth writing this all down.....thank you for listening. PS: I will look up C Deff as I've never heard of that, which is strange, with as many years I've had this disease........Judyc/Irishgal777