UOAA Discussion Board

HI, I HAD MY INDIANA POUCH PLACED 8-27-07, BY DR. RAZ AT UCLA. FOR THE FIRST 2-3 MONTHS EVERYTHING WENT GREAT, I GOT TO DRINK ALL THE JUICE AND LEMONADE I WANTED TO (COULD NOT PRIOR TO THIS D/T INTERSTITIAL CYSTITIS BLADDER). HAD MEXICAN SPICY BURRITOS, PIZZA AND BEER. ALL THE THINGS I MISSED. STILL TAKING PAIN MEDS BECAUSE OF URETHRAL PAIN. THEN IN NOV. 2007 STARTED VOMITING BEFORE AND AFTER EATING, WEIGHT LOSS, DIFFICULT SLEEPING, WORKING, EVERYTHING WAS HARDER. WENT TO UCLA FROM VIRGINIA, HAD THE DISTAL URETHRA REMOVED, HAD PERCUTANEOUS NEPHROSTOMY TUBES PLACED IN LEFT KIDNEY,CT AND MRI, ENDOSCOPY, EVEN PSYCH. WAS GIVEN LOTS OF ATIVAN, PHENERGAN AND DILAUDID IV AND THEN DEC 20, 2007 SENT HOME TO VIRGINIA. WELL I ABOUT DIED UPON RETURNING HOME. NO MEDS, COULDN'T SWALLOW EVEN A BANANA PIECE. WEIGHT WENT FROM 120 LBS TO 109 LBS. HORRIBLE NAUSEA. DR. RAZ IS THRU WITH ME, DOESN'T KNOW WHAT IS WRONG. SO I HAVE TURNED TO JOHNS HOPKINS HOSPITAL IN BALTIMORE- CLOSER TO HOME. I WAS PUT ON TOTAL PARENTERAL NUTRITION VIA A CENTRAL IV LINE TILL OCT 7, 2008. HAD UPPER GI, ENDOSCOPY, COLONOSCOPY, HIDA SCAN, GASTRIC EMPTYING STUDY, TURNS OUT - I HAD ADHESIONS IN MY SMALL BOWEL- NEAR THE ILEUM USED TO MAKE THE POUCH, GALLSTONES IN THE GALLBLADDER, SEVERAL SMALL VENTRAL HERNIAS. ALL OF THIS WAS REPAIRED OCT 8, 2008 - I WAS CUT DOWN THE SAME DR. RAZ INCISION IN MY ABDOMEN. AT THIS POINT I HAVE BEEN ABLE TO EAT SMALL AMOUNTS OF SOFT FOODS, BUT I USUALLY HAVE TO TAKE 0.5 MG ATIVAN SUB LINGUAL TO GET MYSELF TO RELAX AND DIGEST THE FOOD. I HAVE BEEN PUT ON ACIPHEX 20MG PO BID TO STOP THE CONSTANT REFLUX AND MY HOPKINS DOCTOR- DR. JOHN CLARKE IS ABOUT TO PUT ME ON DOMPERIDON (MOTILIUM) A NON-FDA APPROVED MED TO INCREASE THE MOVEMENT OF FOOD AND FLUID DOWN MY SMALL INTESTINE. I KNOW THAT I OVER USED VICODIN FOR THE 2.5 YRS OF INTERSTITIAL CYSTITIS AND ALSO DURING THE POST-OP MONTHS OF SEPT. OCT. (SOMETIMES TAKING 2 VICODIN WHEN I KNEW HE WAS GETTING READY TO PULL A TUBE OUT).- CAN CAUSE DECREASE MOTILITY OF THE BOWEL. NOW I WON'T TOUCH A PAIN PILL EVER.
PRIOR TO ALL THIS I HAD OVARIAN CA IN 2006, HAD A HYSTERECTOMY AND CHEMO AND LOST MY HAIR. MOST OF ALL OF THE ABOVE I HAVE GONE THRU ALONE, DON'T HAVE MANY FRIENDS, HARD TO KEEP THE ONES I HAD OR HAVE, THE LAST YEAR MY LIFE HAS BEEN THE MOST HARD OF MY ENTIRE LIFE AND I WISH I HAD A POUCH FRIEND TO WALK THRU THIS WITH ME. I MISS SQUATTING AND PEEING, BUT I DON'T MISS THE BURNING PAIN OF MY OLD URETHRA/BLADDER. I WAS JUST WONDERING IF THERE IS ANYONE ON THIS BOARD WHO UNDERSTANDS WHAT I HAVE GONE THRU AND CAN TELL ME WHAT IT IS LIKE WHEN YOU SURVIVE THE LOSS OF A BLADDER. I WISH I HAD THE BODY OF THE GIRL WITH THE COLON CANCER WHO IS ON THE CALENDAR. MY ABDOMEN IS STILL SO DISTENDED AND ODD LOOKING. HARD TO FIND A SURGEON WHO WILL TOUCH A BELLY THAT HAS AN INDIANA POUCH. THANKS FOR LISTENING, AILEEN

sorry to hear you are feeling so bad. i had hoped your surgery would help you some. i know this is out of left field but have you tried smoking any pot. my aunt who was taking cancer treatments starting smoking it in her 70's and it helped her with her nausea some. i'm not saying to do that i'm just floating it out there. hope you start to feel better. rikki

I have been reading old posts and came across this one from you. I had an Indiana pouch done on May 7, 2009, 8 weeks ago, for bladder cancer. I also had interstitial cystitis which would have been enough to want to have my bladder removed. To me it was so much worse than the cancer. So as far as the pain, burning and suffering from IC I can relate to you. At my request they removed my urethra along with the bladder. It had burned and was so painful I wanted it out of there. so glad to get rid of that pain. My recovery is still taking a long time but I knew it would, does not make it any easier but in time I hope to have a life again. Voiding 20 to 40 times a day with pain and burning during and after was no fun and I was getting housebound. Just wanted you to know you are not alone in that area.
Take care,
Tamlin

Hi,folks.Could you explain what is a Indiana pouch.Thanks.
Margaret.