hey everyone....i just found this site today and have been reading it this afternoon looking for advice to give to my mother. you guys all seem so friendly and helpful and im hoping you can maybe send me in the right direction for information for her.
for starters...shes diabetic and has been for about 20 years. she suffers from diabetic neuropathy in her colon/large intestine. the nerve death there has caused colonic inertia that she has spent the last 10-12 years dealing with by taking daily enemas. for the last year and a half though, the enemas have stopped working. she will fill up with water and blow up like a balloon and most of the time now not only will she NOT get fecal matter out, but the water stays put too. so they have stopped working for her. to make matters worse she has begun to suffer from excrutiating rectal pains (she says it feels like its clamped shut like a muscle spasm that wont go away) and has begun living on lortabs. these pains wake her up in the morning and she practicaly runs to get her enemas ready cause the warmth is the only thing to give any relief even though they dont clean her out anymore. she is becomming quite toxic from all of the waste backing up in her system which leads me to her newest health problem....her kidneys are beginning to shut down from all the toxin overload. she was diagnosed with kidney disease 2 weeks ago and is functioning at 40%. she was FINE a year ago.
now a year ago she went to a Gastroenterologist and had a colonoscopy done and everything looked GREAT even though she wasnt having bm's. so they did a sitz marker test and she failed with flying colors. after 14 days the markers had all conglomerated in one area which is where the beginning of the dead bowel was and then remained. they did daily xrays on her for 2 weeks and finally gave her the go-ahead to do an enema which did wash them away. their advice...eat more fiber. (i have to admit i gave them a serious piece of my mind that day). after that though she refused to go back to that piece of crap doctor who wouldnt do anything to help her. we actually had to go home do all the research and tell him what tests to run on her in the first place. we should have known then he was a waste of time.
so for a year now she wakes up in pain, spends 80% of the day in bed in pain because sitting is out of the question. if she gets looped up on enough lortab and doesnt pass out, then i may be able to take her for a short drive to just get her out of the house. this last week she told me she didnt want to live like this anymore and she was ready to give up fighting because its not worth it. that broke my heart. i made her call her regular doc and move up her appointment so she could go in and find out what CAN be done for her. well her appt was this morning and her doc decided to send her to Baylor. we are waiting now to hear when that will be. im so thankful that the ball is rolling FINALLY for her to get some help from docs who know what they are doing but she is scared to death.
we expect she will have to go thru all the same testing again and probably even more that they werent able to do here in hickville where we live. i almost feel rushed though for her to have surgery...of anytype just because of the shape her kidneys are in. i know when she is finally moving again, it will take quite a load off of them.
so for her...where do i need to find information for her to read to make her feel more comfortable about this? timing wise, how long do you think it would take from them running tests to actually doing something to help her? im just so concerned i dont know where to start looking and i want to arm myself with as much information ahead of time so i can go up to bat for her again if need be. im definately going to make her sit down and read these forums because just after finding them today i already feel more positive about it but she has never known anyone in her life who has had to deal with a bag of any sort so that is freaking her out. we already call her the bionic woman since she has hearing aides, an insulin pump, and electrostim thing to go on her leg 10 hours a day to help speed bone growth (osteoporosis too) and a power chair since shes so weak she cant walk far. with all that...whats a bag huh??
anyways i appreciate any help you guys can offer and look forward to your responses.