I hate to say the same old platitudes but I am with everyone else to say that I am with you and thinking the best for you! Like many others, I am going through one of the worst times of my life... all unexpected.
I am glad you came forward because so many times we all keep quiet when we can use sometimes the best information we can gather from others who have gone through it and possibly be helpful. I hope I never have to have what you have had to have done because I do not want to mess with the bowel as that can be very dangerous as well as a big surgery. If we can all survive the doctors... then we will be doing good! I have been hurt very very very badly with things that will affect me the rest of my life by 3 different medical "professionals" (I don't like to say professionals when we know more than they do most often and sometimes their stupidity never ceases to amaze me that the most common sense things) since 1995. Thoughts, good intentions, prayers and the best of the best to you and those taking care of you. 🌞 ~Lori nearly 37 years post On Sun, Sep 4, 2016 at 6:30 AM, Dana Wray <[email protected]> wrote: > I have been suffering numerous UTI for the last year and had a number of > testing. I was just told a week and a half ago that my ileoconduit was no > longer working and I needed a new one. I didn't realize that urologist I > had been seeing realized what I was facing. He had given me 4 lithotripsy > to break kidney stones. The urologist gave me three doctors. I had to look > up the numbers and call each office. None of the three doctors could do > that kind of surgery. One of the office managers gave me the name of > somebody that he thought might do this type of surgery. I had been in the > hospital for two weeks with sepsis and another urinary tract. The doctor > said that he had performed over 100 of the surgeries. Two out of three > people had complications and he had lost some of his patients, > I don't have any other option. Has anyone ever heard problems on your > ileoconduit no longer function. Dr. Wyre said that in normal ileoconduit > will last at the most 40 years. I hope I will hear from someone. I may be > looking at the wrong words but I'm not really finding documentation about > the surgery. He will have to cut another 6 inches off my small intestine to > make a stoma. I don't know the ureters are working properly. I didn't ask > that question. I had just completed 14 days using a central line after I > got out of the hospital and I'd already developed another infection. So > please provide any information. > I don't think I have any option, but I'm trying to prepare myself. My > disability C4-5 quadriplegic complete, 42 years post. Ileoconduit was > performed after bladder cancer 86. I just had 10 inches taken out of my > large intestine: in November 2015. Seven lymph were remitted that were > cancerous. Three were not. I took chemotherapy for a couple months but it > just cause bleeding. So it was no longer a candidate. They are going to > peat scan after my surgery,the surgery is going to be 10 hours long at KU > hospital on 9/7/16. > There is also something on my ovaries and a couple modules on my lungs. I > wanted to share this with all of my Quad friends, if anyone can offer any > information to my medical situation, please respond. It will be hard for me > to check my messages or the on my computer to read about other persons with > spinal cord injury with the same problem. Thank you for any input you can > provide. > > > -- "Petting, scratching and cuddling a dog could be soothing to the mind and heart and deep meditation and almost as good for the soul as prayer." ~Dean Koontz
