update for march '09

i went to the dr. last week. i have to cysts in my epididymis glands and have to take cipro for 10 days to battle the infection. i get to meet w/ an urologist at the end of the month to get a consult. i blame all the catheters from the surgery. my family dr. says no, but we'll see what the specialist has to say. oh there is more i started physical therapy this week to try and get in shape. i guess the weight i gained after surgery, doesn't work well with cerebral palsy. my blood pressure is up, i am getting more muscle spasms and moving in general is harder. i get to meet w/ a dietician on monday. i have to lose the weight. the irony is they did the surgery so i could eat, and stop throwing up. now i'm looking healthier and not gaunt, and now i need a diet. a word on throwing up btw. when the surgeon told me i wouldn't be able to throw up after the surgery. that was a major selling point. considering before surgery most meals didn't stay down due to the huge hiatal hernia and the lower esphogeal spincter was tested working at 0%. what they fail to mention is post operatively, you can still get nausea and the dry heaves. my surgeon did warn me if i catch a stomach virus, it would be worse and last longer since it only has one way out. unless the wrap comes undone. he had 2 failures when patients caught a stomach virus a week after surgery. please consider things carefully. a big part of me wants to go back in time and just have my gallbladder out, and the hiatal hernia fixed. for the hell i experienced the last 2.5 years another part of me would like to get some financial renumeration. they probably made close to 75-80k w/ er visits, tests, dr. appts, and the surgery. the surgery was 41k. and i am still not done, my nerves cause stress which cause nausea. my family dr. says take zantac and prilosec, neither is good for long term use.
i have lost time to enjoy family, friends, hunting. i had to get a pocket calendar to keep track of appts. don't make the same mistake i did. i believed my surgeon. it is not a simple surgery they're more potential problems than you had prior and it's not just wait 8 weeks and your life will resume as normal. i'm still waiting to feel normal. i can't remember when i felt normal last.

my story cont'd

after the barium xray. i had a nuclear gallbladder scan and abdominal ultrasound. on top of the huge hiatal hernia, my gallbladder had stopped working properly with no spincter muscle contractions. it was filling up like a balloon but not emptying. so i was sent to see the surgeon to get a lap nissen fundoplication. i had chronic abdominal pain, i thought i could get fixed right up. i was wrong, it was just the beginning of more tests. i had to have an endoscopy that showed i was starting to develop barret's esophagus. after that i had to have a swallow test which showed my lower esophageal spincter was functioning at 0 %. next i needed a gastric emptying study before the surgeon would ok the lap nissen. i passed that test w/ flying colors(which later i would regret) i had allot of reservations prior to the surgery, i had bad dreams about getting the surgery. i had thought of cancelling it all together and waffling on just getting my hiatal hernia repaired and my gallbladder out. on 10/23/07, i had the lap nissen because the surgeon thought that would give me the best outcome w/ my GERD. i woke up hours later and was out of it and in quite some discomfort. i got pain medication. the worst was after the surgery i had strong hiccup burps that was agony that i didn't want to experience. they lasted for a week w/ severe pain. i couldn't urinate post surgery i needed a catheter to alleviate the pain from 750cc building up in my bladder. the dr. told me you get uncomfortable at 250cc. i was discharged on 10/25 w/ the catheter. i was experiencing nausea, a temperature and abdominal pain on the 26th. taken by ambulance to the local hospital, they deternined my bowel went to sleep. i was then transferred by another ambulance at 2am back to the hospital where i had the surgery. they wanted to do another ct scan, i had to drink a special contrast. since the first 2 choices were loaded w/ artificial sweetner. they wanted me to drink a huge cup of stuff. i couldn't drink allot at once. the 1st tech didn't seem to comprehend that i just had the fundoplication. the 2cd tech was more understanding. by 7am after laying in the er for 5 hrs. a dr. informed me i was getting re-admitted so they could try and get my bowels moving again. i was released on the 29th (my 36th birthday) i ended up at the local er twice that night for a blocked catheter. after they were going to give me a 3rd catheter the er dr. informed me it was normal for urine to go out around the catheter while straining to have a bm. do tell, what torture i endured. some birthday. i used to look forward to my birthdays ever since i was a kid. i think that feeling has died since that night.
the surgeon told me i neede to add fiber to my diet to keep my bowels going. try to find stuff like metamuscil w/o artificial sweetners. plain benefiber is what i tried. next i developed a severe urinary tract infection due to my 5 catheters. oh goodie, i needed cipro for it. i was still burping, had bloatedness and a sharp pain under my left ribcage. the surgeon recommended simethecone or the otc version gas-x. however gas-x has artificial sweetner. i found phaszyme at walmart that didn't. i was taking 2 a day. after surgery they warned me that i may be sensitive to hot and cold. i tried to go rifle deer hunting a month after surgery, the wind took my breath away and i started choking a dry heaving for quite a few minutes till i was able to stop. i have had terrible bloatedness, bouts of nausea and dry heaving. the acid reflux is much bettr.i started eating and gaining weight. people say i look great. i still have no energy. the added weight is a problem w/ my cerebral palsy, due to moving around. my family dr. warned me if i continue to gain weight i will develop more muscle spasms and run the risk of my surgery coming undone.
fast forward to '09 i now think i may be allergic to gluten, i eat at burger king talk about fast food. within an hour severe stomach cramps and diarrhea, add a beer and it is a perfect storm for a very bad coupla days. no gluten means no benefiber. i think i may have gastric dumping syndrome, so i am trying a gluten free liquid vitamin by doctor's pride. mentally since trying to cut out gluten for the past 2 weeks. i do feel more alert. however it means more dietary restrictions. i also found fruits and veggies are not very filling and are rather costly this time of yr. it also seems that when i get overheated i start to feel weak and lightheaded. prior to the surgery. i couldn't get warm now i can't regulate my body temperate to stay comfortable. i read somewhere online that you can suffer nerve damage from the fundoplication and you can get shortness of breath, heart palpitations, and the surgery can affect your gastro-intestinal hormones. although drs. are unsure exactly how or to what extent. i feel like i was misled by all my drs. the hospital and surgeon got 41k just for the surgery and initial hospital stay. i regret every day that i didn't stick to my guns and just had my gallbladder out(which broke in half when they tried to remove it, because it was thin walled, and they had to spend extra time cleaning me out in the or) an my hiatal hernia repaired. drs. have no clue, it is a total guessing game for them on how tight or loose to make the wrap. too tight, no burp and problems digesting. the food doesn't empty properly. too loose and it slips and welcome back GERD. this is why my fundoplication journey ain't been no fun.

fundoplication reflections

i was born w cerebral palsy. i have had stomach problems since childhood. it seemed that i always had stress induced vomiting around the holidays, i would get sick w/ excitement. at 19, i had a barium x-ray and ultrasound. the tests came back inconclusive. in 2000 i had another barium test, that came back also negative. i have had increasing episodes of vomiting and sttomach pain and bowel problems. in 2007, things got really bad, i was throwing up even at home with no stress induced situations, i had irritable bowel symptoms, was given medicine by my family dr. w/out being formally diagnosed. at this time i also found out that i was allergic to artificial sweetners. as a teen, diet soda gave me a headache. what i didn't realize is nutrasweet has morphed into other names: splenda, ascesulfame k(potassium), sucralose(propel made by gatorade) gaviscon tablets helped my heartburn i was taking 10-18 a day. i ended up in the er thinking i was having a heart attack or stroke. my extremities went numb, i had dizzyness, severe headache and fast heart rate. it is a reaction to artificial sweetner. i am now also allergic to bottled water, due to the chlorine. chlorine is in artificial sweetner by product.
i had a third barium x-ray in june of '08. which allot of them are full of artificial sweetners. this time, i threw up the barium milkshake. the tech and dr. said,"No wonder, look at the size of that hiatal hernia