Categories: Alternative Medicine

Cystinuria: How to Live with Your Condition and Minimize Cystine Kidney Stone Formation

According to the National Institutes of Health, about ten percent of Americans will experience kidney stones at least once in their life. More than half of kidney stone sufferers have a condition called Hypercalciuria, a condition where the body consumes too much calcium and the load can’t be handled by the kidneys. This excess calcium is expelled in the urine and this overload can form kidney stones. Because cystine stones are so rare, those who suffer from cystinuria often receive incorrect if not detrimental advice on how to treat our stones, as they assume all stones are caused by taking in too many dairy products.

In reality, cystinurics form the rarest type of stones as only one percent of all stones passed are related to cystinuria. Cystinuria is a rare genetic disorder where the kidneys cannot handle normal levels of amino acid, specifically cystine. Cystine is a solid matter. If well hydrated, this cystine can sometimes be dissolved, however if the sufferer does not drink enough water these solids cannot be dissolved and the cystine forms into jagged golden-colored stones that can form or re-form in a month or two without medical interventions varying from taking in large amounts of water to taking medicines that help dissolve the cystine such as Cuprimine, Thiola or Capoten though not without side effects such as nausea. Potassium citrate can be used to prevent the patient’s urine from becoming too acidic in the first place, thus there is a smaller chance that stones will form.

When I was first diagnosed in February 2005 through August 2005, I had passed over one-hundred cystine stones on my own with sizes varying from 1mm to 4mm and had four ureteroscopic surgeries and subsequent ureter stent placements despite consuming inhuman-amounts of water to the point where I had to get up and urinate four times a night. One of the surgeries left me with an infection and a blood clot. I considered those four months a lesson in pain tolerance yet I had finally had enough and my urologist suggested two things. Either I try one of the above-mentioned drugs or I could see a dietician to help me transition to a fully-vegan diet, vegan meaning no animal protein whatsoever including meat and all dairy products.

I’m hyper sensitive to most medications that call for “slight” nausea as a side-effect. For instance most pain medications I took to treat my stone pain left me praying to the porcelain God for hours at a time, where most other people are not affected. Knowing this, I refused the medicine and made an appointment to see a dietician.

An unconfirmed hunch in the medical community assumed that since the amino acid cystine is the byproduct of animal protein, the natural solution would be to place sufferers on a strict vegan diet. To this day, it is not recognized as a solution.

A self-confessed protein lover, I had a hard time enjoying this diet. At the time I was in Japan so I was lucky to have soy-based products, including tofu, in constant supply. This was helpful because as I did my research, I found that carbohydrates were okay and I probably consumed more carbs than I would normally and that didn’t seem too healthy to me. In fact after a short while I craved carbohydrate avoidance. Instead I turned to soy milk, lots of vegetables and fruit, tofu and expensive pre-packaged vegan meals.

Despite my crankiness, one day I woke up feeling rather lonely, like an old friend hadn’t called up in a while. I realized that I haven’t felt kidney stone pain in over a month, which was a record for me. Against my doctors orders I started drinking only normal amounts of water and despite not being excessively hydrated, I still didn’t accumulate stones! I was elated and pain-free for the first time in months, although I did miss all of my new best buddies in the OR.

It’s been a year and a half since my last surgery and large kidney stone. I’m still not drinking the correct amount of water but the vegan diet seemed to reboot my body to the point where I slacked off of the diet and still remain relatively stone free. I haven’t passed a stone in about a year though a recent CT scan did notice a small stone in my kidney about two months ago but I haven’t felt it yet and it may even be dissolved by now.

I highly suggest that cystinurics try a vegan diet but if that is too much of a burden for the patient, there are still ways to curb stone formation.

First, don’t listen to well-meaning people who tell you to avoid coffee. My urologist told me coffee is fine but try to have one glass of water for each cup of coffee you consume due to the caffeine, which can be dehydrating. I switched to mochas with soy milk and they were rather good and satisfied my coffee craving before work.

Next, people will tell you to drink lots of cranberry juice. This may be helpful in people with calcium-based stones but it is contraindicated for those with cystine stones as the acid in the juice can aggravate and hasten the development of these stones. Instead load up on fresh lemon water or lemonade as that specific acid can help dissolve our stones, plus it is a less-boring way to stay hydrated. Oolong tea is also helpful. My close male friends suggested I drink beer at the height of my kidney stone pain to help flush out the stones faster and while I don’t condone drinking to self-medicate, my urologist didn’t have a problem with this method when I brought it up. Again he suggested the one beer to one glass of water rule.

Even though stones can cause excruciating pain it is good to get up and take a walk or go for a swim as the extra movement can help dislodge a stone and more importantly, stop the muscle spasms in your ureter.

Next, don’t be above using pain medication and take it as soon as you start feeling the pain or it will take longer to work later on. While most doctors hand out Percocet for kidney stone pain, I was partial to a non-narcotic anti-inflammatory called Toradol. If you have ever been rushed to the ER for stone pain, this medicine might sound familiar. It works wonders for stone and kidney pain. While it is usually administered intravenously, don’t be afraid to ask for it in pill form for home consumption. I now take it regularly for a chronic inflammatory condition in my back and it is an all-around good replacement for Naprosyn or Motrin. Toradol does the same thing but it is in a different anti-inflammatory class. Finally, if surgical intervention is needed be sure to go over all of your options with your urologist, especially if you are a female. Noninvasive procedures such as Extra Corporeal Shock Wave Lithotripsy (ESWL) can be easy on men as shock waves are placed on the body externally over the general location of the stone, however in women, the stone sites can be precariously close to our reproductive organs and shock waves can obliterate these organs. My doctor chose to go with a cytoscopy, otherwise known as Ureteroscopic Stone Removal. With the patient under general anesthesia or sometimes an epidural, the doctor will place a tube with a camera up through the urethra, into and beyond the bladder and then up into the ureter and possibly the kidney itself. Once the stone is located, lithotripsy is conducted internally and breaks apart the stone. A small basket grabs the stone pieces and pulls them out. Before the camera tube is removed a stent will sometimes be placed to avoid infection and it lets the ureter expand to allow for extra fragments to be easier expelled. The stent is taken out about a week later in the doctor’s office with local anesthesia while you are awake. It’s mostly painless but it’s no fun. If you follow the advice of your doctor and the above mentioned steps you should be able to avoid the operating room. I am proof. Even though I will have cystinuria for the rest of my life (and possibly pass it on to my kids but it seems to skip a generation in my family) I consider myself in full remission thanks to the homeopathic steps I’ve taken to correct my condition.