Posted 2/4/2013 11:25 PM (GMT -6)
I am so sorry that you have joined the Kidney stone club. I will tell you that if there were no stones seen on a CT, then there were either no stones at all or they were so tiny then they really meant nothing. A CT scan can see stones as small as 2mm unless they did it with contrast (which they shouldnt use for kidney stones). If they were smaller than 2 mm, then they couldnt have been causing any troubles. A 6 mm stone that you have now, your urologist is correct in wanting to remove because it can get stuck when trying to pass. Is it stuck in the ureter now? or is it in the kidney?
My story is a long and complicated one. I had a bowel obstruction and perforated colon in October of 2010 which caused me to lose 18 inches of my colon and ultimately needed an iliostomy. After 3 months the illiostomy was reversed (thank goodnes - it was the worst 3 months of my life but it did save my life - they didnt think I was going to make it after the perforated colon). Well, the reversal was in February of 2011 and the bladder infections started in April. By June I was walking around with terrible back pain but didnt know what it was. In July, my Endocrinologist sent me to the Urologist because my Urinalysis was loaded with protein and blood but no infection. She sent me for a CT scan and 2 days later I was on the operating table - 4 stones on the right side - 1 was obstructing the ureter and I had 3 on the left. It was the beginning of a long year and a half. She did a cystoscopy and lithotripsy and blasted the stones with a laser and inserted a stent. After the procedure, I lost a ton of blood and spiked a fever of 104 - was hospitalized for 9 days. A week after I got home, I finally got the stent out - thank goodness it was torture, it burned and itched so bad. After that, I got so many more bladder infections. It took until October before I could finally have the left side done or so I thought. I was scheduled for the middle of October. The day I went in for the surgery, I felt fine other than I had terrible back pain all week but I had a KUB 2 days before and a CT the week before for something else and I was told all was fine. I got to the hospital and I had 103.8 and I was septic. My urologist called my bariatric surgeon in New York City where I had my gastric bypass because she is the one that did the CT scan (she was covering for my original surgeon) - it turns out the CT showed an obstructed ureter the week before but since it was related to my gastric bypass - she was looking to see if I had another bowel obstruction and she knew I was having kidney stone surgery, she failed to see the need to tell anyone that I had the obstructed ureter and let me walk around septic for a week. If I were ever to sue a doctor it would have been her but I was so sick and not up to it but my urologist could have killed her. So, they had to cancel my surgery but still had to take me into surgery to insert a stent for 2 weeks in order to avoid my from shutting down. My Creatinine was through the roof. So, I went back in 2 weeks and they took out that stent and then performed the original surgery and put in a new stent. Each of those procedures, also caused me to bleed severely and again the lithotripsy also caused me spike a fever of 104 again. I was in the hospital for 8 to 10 days for each time and I had a blood transfusion this time as my hemoglobin got down to 7.7 this time, the other times it went down to 8.1. For some reason my body doesnt like having foreign bodies in it. those surgeries were in Oct and Nov 2011
Then in 2012, the bladder infections were the main problems for me. At first we thought the kidney stones were better. My nephrologist tested my urine through a company called Litholink - that is all they do, you can check out there website - they do very thorough testing and I take tons of supplements to prevent the stones and it really helps - it all depends on what type of stones you have. YOu can follow a certain diet too and you also have to drink alot. I will list all that I take at the bottom because I think it will help alot of people.
Starting in March, I was beginning to get bladder infections again and I was taking Macrobid which wasn't working so I went on Cipro. At first it worked but then I got Yeast and needed Diflucan. Then they kept coming and I would go back on Cipro and then that stopped working and I would try Macrobid again and nothing, so we tried Levaquin and it worked at first and then that stopped working. I am allergic Penecillin, cephalosporins (which are keflex and all things that start with Ceph), sulfa and cleocin. So, that doesnt leave anything else to treat a bladder infection with. So, by June when the bladder infections started coming back resistant to all oral antibiotics accept for the things that I am allergic to, I had to be admitted to the hospital for IV antibiotics. They treated me with Durapenim which is very strong and very effective. I got better and 3 weeks later I was back in the hospital, another infection. Back on IV antibiotics. This time, I was on Vancomycin and Diflucan again. Then 3 weeks later, again - back on Durapenim. Then 3 weeks again - This time Meripenim. Each time they checked me for stones and up until October, even though I had unbearable flank pain, I kept being told it cant be my kidney stones, because they were small and they were in the middle and bottom of the kidneys. There was only nephrologist that said the infections were due to the stones and I agreed with him but my urologist refused to operate. By September I was in the hospital with infections every 2 weeks, it was insane and my PCP's partners were getting annoyed at me saying I was faking or elevating the amount of pain - I told them to try to live one day in my shoes with a kidney stone. Then one night in October, I was playing BINGO and the pain in back was so bad I thought I was going to pass out. Now, I have never passed a stone before. They always get stuck when they try, even it they are tiny = that is why I told my urologist to not wait even if they are tiny because they are going to get stuck and she said, they wont. Well, on Oct. 16th at 8pm, the pain started and by 4 am, I called 911. By 7 am, I was on the operating table. A 4 mm stone decided to try to pass and it got stuck in my right ureter. Thank goodness, my urologist partner was there that day and he operated. So, he was great. All he did was put in a stent and then on Oct 31, Halloween my urologist did the full surgery. When I asked her to do the left side - she basically said she wont be my uroloigst anymore. We dont see eye to eye. So, I now use her partner and I am very happy about that. I will go back to him in a few months to talk to him about doing the left side if anything is still there.
The best thing happened though and I was right all along - now that the stones are gone on the right side - I have had a bladder infection since the surgery in October and that is a miracle. It is so nice to not have constant flank pain and to not be in the bathroom all day and all night long. I cant stand when doctors think they know everything when we know our bodies. I even had my nephrologist agree with me and she still said he was wrong.
As far as treatment for stones - Calcium oxylate stones - 100mg of vitamin B6 daily, drink atleast 64 to 80 ounces of water a day, take 500 mg calcium citrate with each meal - this binds with the calcium and removes the calcium oxylates. It must be calcium citrate not calcium carbonate - carbonate causes stones.
If you have a low citrate level - in addition to the calcium citrate - you should take 300 - 500mg of magnesium citrate with each calcium dose and Potassium Citrate (this is a prescription called Urocit K) and it comes in 5MEQ, 10MEQ or 15MEQ - that is up to your doctor. I started with 15MEQ, the usual starting dose and my nephrologist just doubled it 15MEQ, 2 times per day. This is a very important supplement that is only used as a kidney stone preventative. It isn't the regular potassium that people take for low potassium levels that is potassium chloride - this is potassium citrate.
People that have uric acid stones - there are other treatments that I am not familiar with because I dont have that type of stones.
Anyone with stones, should ask to have there urine sent to Litholink - it is so much more detailed than any other lab and the report is amazing. Check out there website. YOu can see a sample report and also learn alot about stones. There is a patient section, a physician section - I read both