‘I Thought I Was Going to Die’: My Kidney Stones Journey

I woke up at 6 a.m. on a sunny Saturday morning in June feeling like I had to pee, but when I went to the bathroom, nothing happened. If this doesn’t sound that strange to you, let me add that I was 20-years-old at the time and a college student, more used to going to sleep at 6 a.m. than waking up at that time. 

Then, I noticed a growing pain in my back. Within minutes, it was so debilitating that I was hopping around, bending over, stretching, moaning – anything for relief. I took some Advil but knew it would take at least 20 minutes to start working, if it would help at all. 

After a few more minutes of intensifying pain, I was worried something very serious might be wrong. My appendix might be bursting, or, who knows what. So I called 9-1-1. According to doctors, this is the right move. 

“If you have severe abdominal or chest pain, go to the emergency department or urgent care center immediately, because it could be something life-threatening,” said Dr. Neil Brown, a practicing emergency medicine physician and Chief Medical Officer at K Health. 

In a few minutes, I was in the back of an ambulance. While I was still in pain, I felt relieved that I was getting care. 

Then, a miracle happened: Just as we pulled up to the hospital, the pain stopped. I felt normal, but shaken. What happened? Was I actually in any danger? Would it happen again? 

What Are Kidney Stones? 

Kidney stones are exactly what they sound like: mineral and salt deposits that form inside your kidneys. There are five major types of kidney stones – calcium oxalate, uric, cystine, struvite, and calcium phosphate – and each forms in a different way and involves different treatments and preventative measures. 

They all have one thing in common: They can cause extreme pain when they pass through the urinary tract. For most people and most stones, the painful part is when the stone dislodges itself from where it is forming in the kidney and starts to move to the bladder through the ureter. A common misconception is that passing the stone from the bladder and out of the body is the painful part, but having experienced this several times now, I can tell you that you barely feel it. 

If you ever are unfortunate enough to have a kidney stone, the doctor will tell you to do something that seems strange but is actually very important. They will ask you to pee through a sieve, to catch the stone so it can be analyzed to determine which kind it is and, therefore, what you should do to prevent the next one. 

Diagnosing Kidney Stones

“I personally have treated 1,000 kidney stones,” said Dr. Brown. “They’re common and I can spot one a mile away.” 

Dr. Chesney Fowler, an emergency medicine physician and medical director at K Health, said that she doesn’t even need to see the patient, but can tell by the way they are moaning in pain. 

For Dr. Rob Vichich, an emergency medicine physician and a medical team lead at K Health, it’s all about the way the patients move. 

“They do the kidney stone dance,” he said. “They’re super uncomfortable, they’re writhing around in bed. You can always spot them from across the ER.”

These symptoms are a dead giveaway: a feeling of having to pee, nausea, and blood in the urine. Kidney stone pain starts in the lower back, on one side, depending on which kidney has the stone. As the stone moves, the pain travels, too. People often wonder if it’s appendicitis, but that pain is in the front, in the lower right-hand side. 

Once doctors suspect a stone, they will order blood tests and urinalysis to make sure that the kidney and bladder are not infected – which can happen in some cases – and that there is blood in the urine. The doctor may order an ultrasound, which can confirm visually the presence of a stone and can also show swelling of the kidney. Lastly, the doctor may order a CT scan, which will show the doctor the size of the stone as well as its exact location. Both are critical for treatment. 

Stones typically range in size from just a few millimeters up to just over a centimeter, which is a smidge more than half an inch wide. 

“The largest one I ever saw was 12 millimeters,” said Dr. Vichich. “It was an old man and he was very stoic about it, but he must have been in a lot of pain. 

That may sound small, but imagine something the size of a large pea, made of hard, sharp rock, forcing its way through tiny tubes within your body. Occasionally, untreated stones can get up to the size of a golf ball. The Guinness Book of World Records lists five inches as the largest stone ever. 

Kidney Stone Treatment

For stones five millimeters and smaller, the prescription is literally “take two, drink lots of water and call me in the morning.” 

“The only goal of treatment is pain control, because you can’t do anything emergently to pass the stone,” said Dr. Brown. 

Doctors manage kidney stone pain with a combination of anti-inflammatory drugs and opioids. Toradol and diclofenac are the two anti-inflammatory pain medicines usually given as first-line treatment, and oxycodone or other similar opioids are used for breakthrough pain. Many doctors will also prescribe a medication called tamsulosin, which relaxes the ureter, but research is mixed as to whether this improves outcomes. 

Because there’s nothing that the doctor can do to make the stone pass faster, it’s all about pain management while the stone is moving. 

“I usually say, ‘I know you’re miserable. I’ll get this fixed. I have more pain medicine than you have pain, so ultimately I will win,’” said Dr. Brown. “That seems to relax them.”

Some kidney stones are larger than five millimeters, and are less likely to pass through the ureter on their own. These stones need to be destroyed inside the body so the pieces can pass through. This is done in one of two ways. The first is a procedure where a urologist will put an instrument up the ureter and use lasers to blast the stone apart. The second is called lithotripsy and essentially uses highly focused sound waves to blast the stone from outside the body; they say it feels like being kicked in the back really hard a thousand times in 30 seconds. Both procedures are performed with anesthesia. 

In the worst case scenario, a large kidney stone could block the urinary tract and it can become infected. Patients experiencing this will know immediately because they will feel very sick: severe pain, fever, and uncontrollable vomiting. When this happens, complications can be very serious including, if untreated, sepsis and death. 

“This infection can be very dangerous and result in hospitalization if not immediately caught,” said Dr. Fowler, adding, “it’s less emergent than a gunshot wound.” Not exactly a comforting thought. 

If a stone is blocking the ureter, the first thing doctors will often do is put in a stent, which is a tube that will go around the stone and allow the flow of urine to continue. The hope is that this will also help drain the infection. Doctors will also order IV antibiotics, like zosyn, ceftriaxone, or levofloxacin, depending on what part of the country the patient is in (different first-line antibiotics are used depending on which antibiotic-resistant bacteria are more prevalent in the area). 

My Kidney Stone Journey

My pain had subsided, but they wanted to check me out anyway. After a conversation with the doctor, they ordered blood tests and a CT scan. The scan confirmed that I had a small stone and it had traveled into my lower ureter, meaning I might soon pass it. I was relieved to learn I probably wouldn’t die that day. 

They sent me home with a sieve and some pain medicine. Being 20 and stupid, I threw the sieve in the trash. I wasn’t going to pee into a screen to collect a stone and send it to the crime lab for analysis. It’s a mistake I regret until this day. 

A week later, I passed the stone. I know because I felt it. Just a little blip as I was peeing. No pain. I was relieved to know that the episode was over. My dad is a pediatric urologist who also gets kidney stones and I asked him what I should do next. He told me to cut down on foods with oxalates, including Coca-Cola (read below about different types of kidney stones and how they form). This was painful for me, because at that time I drank about six Cokes a day. I thought hard about his advice and reluctantly switched to Diet Coke. I would only learn 10 years later, when I had my second stone, that Diet Coke, while less caloric and ultimately more delicious than Coke, still contained the dangerous oxalates that sent me to the hospital in the first place. 

It was July 4. I was at a barbecue with some friends. I took a break to pee and what I saw in the bowl below me scared me to death. My pee was the color of rust. This was not something I had ever experienced, but blood where it wasn’t supposed to be seemed bad. I was certain, again, that I would die, probably of a rare bladder cancer. While bladder cancer can cause blood in the urine, most of the causes are relatively benign, including stones, urinary tract infections, or even too-strenuous exercise. 

I called my dad and he suggested that it might be another stone. Another trip to the urologist and another scan confirmed it. This time, it was too big to pass, and lithotripsy was the prescribed treatment. 

On the day of the procedure, covered only by a flimsy hospital robe, I was placed in a warm, shallow bath of water on a bed of thick plastic. The water is to better convey the sound waves, I was told. They put me to sleep and when I woke up it was, indeed, like someone had kicked me in the back a thousand times. Again, I was told to pee into a sieve, and again I made the reckless, youthful decision to ignore the doctor’s advice. 

It wasn’t until this summer, just a few weeks ago, when I felt the familiar back pain that comes with a kidney stone. I was on vacation in a remote, rural place, biking through the woods, when my back started to ache. I pedaled faster as the pain got worse, knowing I might not make it home before being overwhelmed. 

Suspecting a kidney stone, I wanted to wait it out. I knew there was little they could do for me at the hospital, and I hoped it would just pass, which was definitely possible. But the pain just kept getting worse. 

Finally, after a few hours of rolling around on the bed and freaking out my dog, I relented and my wife drove me to the emergency department at the small rural hospital. I was the only patient, but I was certainly making up for it by my volume. I had never felt such pain. I was screaming, pacing, moaning, squeezing my wife’s hand – anything to get through each wave of pain. 

They say that the pain of a kidney stone is worse than the pain of giving birth. As someone who will never experience the latter, I cannot confirm this. I can confirm that this is something doctors will tell you when you are going through it. But is it true? 

“When we tell women that, they tell us it’s way easier than giving birth,” said Dr. Vichich. 

“I’ve seen women handle being in labor with a hell of a lot more composure than men with kidney stones,” said Dr. Fowler. 

They took my blood and had me pee in a cup. If I had any doubt as to what was happening, that doubt was dispelled when my pee came out brown: It was an open-and-shut case. They put an IV in and started me on toradol. While I’m sure it works for some people, it did nothing for me. 

After a few hours of observation to make sure the stone didn’t get worse, they sent me home and told me to come back if I started throwing up and couldn’t stop. There was no urologist in the area, they said, so unless I passed it myself, I would have to be evacuated to a bigger hospital where more sophisticated procedures could be done. 

The next two days were among the toughest in my life. I barely slept, ate nothing, and endured endless waves of pain. The opioids they gave me did nothing. After about 48 hours, the waves slowed down and became less intense. 

Vacation now ruined, my wife and I decided that I would go back home and see a urologist to decide what to do next. We did not get a CT scan at the hospital, so we didn’t know how large the stone was or where it was. 

Through my primary care physician, I got a referral to a local urologist and saw him the next day. It was a Friday, and the initial pain was on Monday evening. He examined me and ordered a CT scan. The machine in the hospital was available, but I was told that the physician’s office didn’t have the manpower to get the prior authorization from my insurance company that would be necessary to have the procedure done right away. I spent the whole rest of the day trying to navigate the byzantine world of health insurance and found out that I couldn’t do the paperwork myself and that even if I did, if I made any kind of mistake, I would be penalized by my insurance company. So I found an outpatient center that would take a credit card and had it done there. 

Looking over the radiologists shoulder, I taped a video of him scrolling through the scan and identifying my stone: 3 millimeters, halfway down the ureter. It could pass peacefully any time, or maybe it would take months. A few days later, on the phone, the urologist confirmed the same thing. In the meantime, he gave me some pain meds, told me to take them as needed, and to drink as much water as I could, 100 ounces a day if possible. 

That was three weeks ago from when I write this. As far as I know, my kidney stone is still with me. I have been dutifully peeing into a sieve. I haven’t caught the source of so much pain, but when I do, you can rest assured that I will not let instinct take over and throw it out the window or send it to a watery grave in the sewer system. I will send it to the proper authorities, to face justice – and so I can know what kind of stone it is to try and prevent this from happening again any time soon. 

Types of Kidney Stones: Prevention and Treatment

Calcium oxalate stones are the most common, with about 80% of stones containing this substance. These stones form when calcium and oxalates meet in the kidney and bind to each other. Preventing these kinds of stones is about eating less salt, protein and foods high in oxalates, like nuts, beets and sesame seeds. Paradoxically, eating foods with lots of calcium at the same time as foods high in oxalates can cause these things to bind to each other in the stomach, not in the kidneys. Perhaps the most important preventative measure is to drink lots of water, which can help prevent stones from forming. 

Uric acid stones are formed by eating too much of the same foods that cause gout, which is essentially a buildup of uric acid in the joints. These are foods high in purine, which include fish, meat, poultry and, in particular, organ meat like liver. To avoid these stones, reduce intake of these foods and drink lots of water. For some patients, doctors will prescribe allopurinol to reduce uric acid levels in the blood and urine. 

Cystine stones are caused by a rare condition called cystinuria, which occurs when a substance called cystine leaks into your urine. These stones tend to be larger and recurring. Reducing salt and meat consumption as well as drinking lots of water is recommended for prevention. For some patients, doctors will prescribe tiopronin, which controls the rate of cystine excretion in the urine. 

Struvite kidney stones are caused by bacteria entering your urinary tract. They are often associated with urinary tract infections. These stones can cause life-threatening infections, which is why when you have any kidney stones, the first course of action is to test your urine for infection. Doctors may prescribe medications such as acetohydroxamic acid,  pyrophosphate, or trisodium citrate to prevent these stones from forming. Research has also shown several herbal supplements as effective in preventing these stones, including rotula aquatica, boerhaavia diffusa linn and curcumin. 

Calcium phosphate stones are similar to calcium oxalate stones but rarer. They are sometimes caused by conditions such as hyperparathyroidism, or renal tubular acidosis. They can be prevented by reducing calcium intake and drinking lots of water. 

This article was medically reviewed by Jennifer Nadel, M.D.