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CystinuriaI have CystinUria.I,m 47 have lost 205 stones from left kidney. last lot in Feb,1999,measuring 1.1cm in length 9mm wide plus 2 small ones behind.I passed m 3 mths later 5 more med.y removed my left kidney except fear am coping all is well so far.y expect it to come back.I dont.(fingers crossed)My problem is I have alot of colic pain still in re.Could also be related to my disease.I have read it sometimes upset intestines I cant find any inmation about it.
Regards
Alice
re: CystinuriaCystinuria is a terribly difficult problem when it's severe. You question indicates pain of some sort but it isn't clear if you mean that this is in the remaining kidney (indicating new stone formation) or pain where the old kidney was. Please clarify this. Obviously, you can't have renal colic pain if the kidney was removed. It is possible to have some complication related to the surgery that may be affecting the bowel that has nothing to do with cystinuria.
You should be on some type of treatment to help prevent stone formation now that you only have one kidney. The most effective therapies are increasing fluid output to 3000 cc's per day or more, urinary antacids to reduce urinary acid levels which helps more cystine to dissolve instead of forming stones, and one of several medications that spefically bind to cystine such as penicillamine, Thiola and captopril. Several of these are quite effective but side effects are a problem. You should be under the care of a urologist or nephrologist with experience and expertise in managing cystinuria patients because this is a complicated area of medicine that most physicians rarely see or care for. Stephen W. Leslie, MD Assistant Clinical Professor Dept. of Urology Medical College of Ohio Lorain Kidney Stone Research Center Lorain, Ohio
Re: Cystinuriahave stage 3 kidney function, entered hospital w/minor respiratory tightness (have emphysema) on Jan 7. . 2 days before Dr. has prescribed prednisone and doxycicline for the lung symptoms (cold), these meds produced bowel upset. I n hospital was given ciprofloxacin IV on Jan 7 and 8. Avelox IV Jan 9, 10, 11, 12. Ciprofloxacim oral on Jan 13. At the same time was given flagyl oral. My arms and hands began to get swollen, Dr. didn't seem concerned. Then my urine output began to decrease to the point that on Jan 11 I put out less than 200 ml of dark tea colored urine (7 AM). At 7 PM I put out same amount/same color urine. On Jan 12 - 7 A> - same amount/same color urine.
On Jan 12 I had access to computer and went to RXlist.com professional site and found that all these antibiotics are very hard on the kidney. That night I refused those medications. Nexct day dr told me he had to keep using the antibiotics to kill the infection in the colon and try to find out what was causing the diarrhea. - never mind that I kept reminding him that what cause the diarrhea in the first place was the two medications taking at home had caused the problem. He was fine before. On DEC 23 had blood test taking for nephrologist and he was very satisfied with results. Now creatinine has gone to 2.90 never that high before. Blood pressure completely out of control. The Dr. that prescribed the antibiotics in the hospital was assigned by hospital.
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