I just discovered that taking Pyridium (Phenazopyridine)three times a day significantly reduces, if not completely eliminates severe pain caused by a [reasonably-sized] kidney stone scraping its way down a ureter. This is one of those lessons you have to learn on your own, especially since narcotics are the first line of defense for severe kidney stone pain.

Anyone who has presented to a doctor's office or ER with kidney stone pain before knows they are loaded with narcotics in the hospital, and sent home with buckets of percocet, dilaudid, or something similar, only to experience the common side effects of these medications, without experiencing much if any relief.

For those who aren't familiar with this drug, Pyridium is not a narcotic or traditional pain reliever. It is a dye that happens to be a natural numbing agent. When ingested, it travels to the kidneys where it is processed with urine. As the Pyridium-filled urine moves from the kidneys to the bladder, it numbs the ureter along the way.

Pyridium is commonly used to relieve bladder infection pain, but for kidney stone patients, it's used to relieve pain associated with post-op ureteral stents. While most kidney stone patients are familiar with Pyridium, how many of us have stopped to wonder what else it can tackle?

A couple nights ago, I was lying in bed with bi-lateral stone pain, with occasional 8/10 pain in my left flank. It hurt to breathe in or yawn. Normally, this level of pain has me reaching for Percocet, but not wanting to become nauseous, my thoughts turned to Pyridium. If it could take away much of the pain I've experienced from ureteral stents, why couldn't it do the same for kidney stone pain?

I took my first dose late that evening. By the next morning, my kidney stone pain was completely gone. I was prescribed one pill three times a day, so I took that amount and by the next morning I felt the need to feel where I was at, so I stopped the medicine. By 1:00pm, the telltale dark orange Pyridium urine had changed back to normal, and I was starting to feel the stone in my right ureter. Now, nine hours later, it's obvious that the stone on the left must have moved, because I only feel the stone on the right.

While the stone on the left shifted to a position or point in my ureter that's less sensitive, I wouldn't have been able to tolerate the pain without the Pyridium. It spared me hours of agony. Pyridium doesn't "kick in" as quick as a traditional pain killer, but it does work, and it works better than a narcotic. Other than the color and staining ability of my urine, I experienced no side effects.

Everyone's bodies are different, but I believe Pyridium could benefit most stone sufferers out there. Ask your doctor for a prescription in advance, and keep it on hand until your next stone appears. Try Pyridium instead of whatever pain killer you would normally use, wait until the dye starts showing up in your urine, and let me (please!) and your doctor know what your experience was like.

I found a new GFR calculator online. It's easy to use and once you have your number, you can look below to see what your number means.

http://www.davita.com/gfr-calculator

Also, once you have your number, don't forget to use these two charts to predict how many years your kidneys have left: first chart, second chart.

Just over 4mm at its widest part. It wasn't set right on that tape measure, but I couldn't tell until the pic was blown up.




Passing it didn't hurt at all. I didn't feel anything, and thankfully, it didn't hurt my ureter on the way down either. A year ago or so, I made a joke about my ureter being a slut. Now y'all get it? It's either dilated (*cough* "loose" from stones and cystoscopes) or scarred all the way on down. I'll take either. I mean, I forget how many times I've been told that stones 4mm and larger don't usually pass, let alone without pain. Maybe I should come up with a kinder analogy. A proverbial high-five of sorts, instead of an insult. ;)

Heehee. I feels one acommin'. My kidneys don't hurt at all right now (a first on this blog I might mention), but I have one...you know. Down thur. Why the southern accent? I don't know. Nerves I guess.

My pain tolerance is WICKED high in this area. Sad, huh? It's a good thing, but I'm just curious to see how big this thing is. Anyone wanna take a pool?

My bet is, 3mm. Any takers? Winner gets bragging rights.

My husband is home on leave for a couple weeks. He took the girls out while running a couple errands and here I am...in a wretched mood. The girls really stressed me out today and I'm having a hard time shaking it.

For some reason, hardly 100% psychological (I doubt), kidney pain always comes on the strongest when I'm stressed. I think being stressed does something to the pain receptors in your brain, like that emotional state weakens your resolve and sucks your endorphins dry. Sure, the pain was there the whole time, but on several occasions throughout the years, when I've been under great stress, the pain comes on like getting blindsided by a train. This doesn't mean I'm in tons of pain, it just means I feel the pain relative to what's going on inside of me. Tonight, it's that annoying salesman-knocking-at-your-door pain. A pain that's letting me know that the stones are back earlier than usual. Great.

I haven't been taking very good care of myself over the past couple months. I haven't been eating well, and I haven't been taking my meds. Do I care? No - no regrets even now that I'm feeling pain again. Classic depression. I'm a logical person. I know I need to stay well while my husband is in Japan for the sake of my children, but I've gotten to the point where I just don't care and I'm struggling with everything on an hour-to-hour basis. Part of it is how I still don't have any Zofran but I'm trying to take care of that now as I write this.

There are so many people out there who have it worse than I do. Some people would be glad to have cystinuria vs. whatever ails them. Gawd I feel like an ass for complaining.

On a side note, despite my awesome Stanford GP and the care in general, I really miss my old setup at the Naval Hospital and my civilian doc. Things happen quick in less-populated areas/on base. Here I have to wait weeks for a CT to get approved by Tricare, despite my diagnosis. There I could go on base and talk to Dave the CT guy. Sigh.

/ramble

I've been intentioanlly bad.

Okay, it's been a while since I've written anything, mostly thanks to that successful ESWL procedure back in August, but I have something awful to confess. My secret isn't that I've started snorting random samples of animal protein or that I've become helplessly addicted to Red Bull (Drinking anything with taurine is like drinking kidney-failure-in-a-can for those of us with cystinuria!) I'm not doing something.

I'm not taking my potassium.

So that's my secret, which can also translate into, "My secret is that I'm the world's biggest dumbass."

But here's why: I'm afraid. I am so pathetically afraid of nausea that I'm afraid to even try these miracle pills. Here's what I've been told. Potassium in these doses lowers your blood pressure. For me, even slightly lowered blood pressure = [insert gross puking onomatopoeia here.] I've been traumatized by all of the nausea I've felt from blocked or failing kidneys, that I'd rather be in pain than experience one more second of nausea. Maybe the fact that I no longer have easy access to Zofran has something to do with my apprehension.

If my husband were here, this wouldn't be an issue. Since it's just me and the kids, I'm afraid. The reason I thought about posting this is because my husband will be home on leave later this month, and I will be able to test out these pills while he's here. I know any side effects won't last forever as people build up tolerances drugs like this. Maybe mine will build up before he goes back.

I like to think I'm a strong person, but as Dr. House once said, "Pain makes us make bad decisions; fear of pain makes us make even worse ones." While that's 110% true for me, pain and nausea are interchangeable in this context.

Just don't tell my urologist. Deal?

Did I mention my bladder issues after the stent was taken out? I'm too lazy to go check, so here goes...

This had never happened to me before, but for whatever reason, when the stent was removed, I had to pee constantly. Bladder spasms were abound and were threatening to reeeally piss me off. I felt a CONSTANT need to pee, even if I had just peed - worse than any UTI I've ever had. It was so bad I could hardly stand the 5 minute car ride to pick my girls up from school.

This didn't necessarially start while the stent was in, in that up until the ureteral stent was taken out, I had to pee at relatively normal intervals, but I do believe the stent and 8 stones combination messed my bladder up somehow.

So I googled the condition and came across a website written by a urologist who suggested re-training your bladder before trying medical intervention. He suggested urinating every 2 hours whether you had to go or not. At first this didn't make sense and seemed contradictory since I was going constantly, but I quickly realized he meant pee on a schedule every two hours, and then as needed in between...duh, right? Ya. It took a second for me to get what he was talking about because I was in so much distress. :)

So, I peed every two hours plus as needed inbetween, and I kid you not, in a matter of 2 or 3 days, things started getting back to normal. As of today, I am 99.9% back to normal. The last thing to go was this insane urge to pee. In other words, I was able to wait for normal lengths of time before peeing, but when I had to go OMG watch out! I spent the last couple days of the ordeal sprinting to the toilet, but things have finally settled down. Retraining doesn't mean that in the end you will feel an urge to urinate every 2 hours. It just helps your bladder settle down and should eventually return you to a perfectly normal pattern.

Long story short, if you have bladder spasms whether due to a UTI, or some kind of acute trauma, try re-training your bladder before looking into medical interventions. Of course see your doctor if antibiotics are necessary, but hopefully this advice will help people who are too shy to bring something like this up to a doctor. If you're like me, you spend waaay too much time at the urologist's office as it is.

Guess how much the total cost of my ESWL procedure was? $30,000! Totally paid for by Tricare. I mean, it always is, but I've never seen the figures before. Ouch!

Now I think I know why I was in so much pain. I think a stone was stuck at the beginning of my urethra and was somehow tethered by the string. Makes sense. As soon as I got home yesterday, I passed a small stone. The doc took a traditional x-ray and said they all saw one 3mm stone left in my kidney. Well, here's why doctors should never rely on traditional x-rays to see how many stones a cystinuric has:



I passed 7 stones this morning! The biggest one is at least 3mm - maybe 4. It didn't hurt, but now that burning feeling in my urethra is totally gone. Go figure. Here is a close-up of the cystine stones:



They are a little darker than normal because they have been soaking in that pyridium dye all this time. The stones were in a Ziploc baggie on top of a tissue. I might take them out later to get a clearer picture. I just didn't want to lose any.

I woke up this morning and couldn't take the pain anymore, so I went to the emergency room at Stanford. I was given a thorough checkup and the on-call urology resident went ahead and took the stent out.

Then when I got home, I peed and the final stone came out - 3mm. I'm so happy and I feel like a normal human being again! Now work, thiola. Work!

Okay. Well for the past week or so, I've felt like my stent has dislodged itself somewhat and is now dipping its tip into my urethra. It hurts to walk - it burns and I feel it moving. I'm so done with this damn thing. I want to live and do stuff while the weather is still nice.

So, just for poops and giggles I went to the urology section of justanswer.com, to see if it's okay for women to pull their own stents out. After posting my question, a young board-certified urologist from Columbia University Medical Center, NY, tried to answer my question. Here's how it went down (for $15):

Me:

Can women pull their own ureteral stents out without any complications? When ever my docs did it, I was always lying down, so it seems like it would be awkward. I'm so done with this thing! I have cystinuria and had this stent placed Aug 19th after an ESWL. It's been killing me the entire time (it hurts to walk). I'm no longer passing fragments, so I think I'm good. My doc wants be to wait until Sept 21st, and he doesn't have any appointments until then.

Optional Information:
Gender: Female
Age: 32

Already Tried:
Diagnosed with cystinuria in 2004. 7 stone removals and stent placements since. Last procedure Aug 19th - 7 stones in left kidney with 11mm stone in renal pelvis.

Doctor:

You could if he left a string attached to the stent. Otherwise it would be impossible because the curl of the stent is inside your bladder. Tell them you are miserable with it and you can't wait- they will live your appointment up. Good luck.

Me:

My doc knows about my discomfort and had me get an x-ray to check for stent placement, which was fine. He's adamant on me obtaining a new ct-scan prior to removal, but none of my urologists in the past had me get one prior to the removal.

This guy is a Stanford doc who has a very busy schedule and has been speaking to me by phone since the pain got really bad. I'll call back on Monday again, to see if I can get it out ASAP. Meanwhile, I'm on detrol and pyridium but it's not dealing with the stabbing sensation I feel while sitting, or the burning sensation I feel when walking.

But, if I decide to take it out on my own, which position would be the best for removing it, or does it not matter? My stents tend to get encrusted with cystine crystals, so I'm guessing it will be a bit stiffer than a fresh one. Thanks.

Doctor:

You won't be able to reach into your urethra and bladder and grab the stent out. He probably wants a Ct to make sure there are no fragments of stones left that will require further treatment.

(Nooooo. Really? This is the problem with male docs messing with womens bits by the way...)

Me:

I realize that - the string is out and taped to my upper thigh. This is my 7th or 8th stent...while most were left in without the string, my new doc left the string attached.

Doctor:

Yes, you could pull it out if the string is still attached-I would do it with your doctors permission- lying down with your legs frog legged.

Me:
Okay - I will discuss with him first.


Fin.


What a complete idiot! I checked this guy out online and he's a very young doc who works on men and women with voiding issues. My question about how to best position myself for the removal was sincere, but I've always wanted to try out this service. I'm not fond of my current urologist, but he makes this other guy look like he grabbed his medical license from a box of Wheaties.

Here's what I've learned today:
1. Stay away from justanswer.com if you have urology questions, and
2. Yes, it's true! You can't stick your fingers up your urethra, on up into your bladder. (Damn.)

Gonna call my doctor on Monday to ask the same damn thing...not that he's at all reachable. :/

No matter how you look at it, ureteral stents suck; pardon my colloquialism. Fortunately, or unfortunately, depending on your personal experiences, one stent will almost always feel different from the next. One doctor can place one type and size of stent in you several times, with the string in or out each time, and for whatever reason each experience will be different, and by "experience" I mean pain.

One stent may have you reeling in pain every time your bladder has been fully emptied, another will leave you with a constant burning feeling in your urethra, one will feel like it stabs you everytime you sit down, and yet another will cause only a slight burning sensation when you pee, but it will be totally tolerable.

Then of course people with cystinuria have the added burden of having cystine crystals encrust the stent if left in too long (a.k.a normal length of time for most people), which will eventually increase the daily pain, and add pain upon removal. The only cure for this is leaving it in for a shorter amount of time, which your doc might not like.

Many doctors are quick to prescribe narcotic pain medication to patients who just underwent a procedure that called for a stent placement after, such as stone removals, but the truth is, you shouldn't need strong pain medication for more than the first 24 hours. There are other medications that are quick to take 80%+ of the pain away, but not all urologists prescribe these medications. Self education is hugely important in this area, especially in times when we only have fellow stent users to rely upon.

Before you undergo surgery for a stent placement, ask your doctor for two medications: Pyridium and Detrol LA. These two drugs affect two different points of pain.

Pyridium is a dye that comes in pill form. When introduced into the urinary tract, it acts as a numbing substance, and while it doesn't completely deaden the stinging, it makes a huge difference. In fact, it's almost inhumane to not take it. After my last stent, my nurse said I could take it up to three times a day. I started at three, and once the irritation died down (by the end of the first day) I went down to two pills. By the next day I realized that two wasn't enough. Three pills allowed me to go through the day in relative comfort.

While on Pyridium, your urine will turn into the color of slightly diluted iodine if taken three times a day. Like iodine, your urine will stain anything it touches, including porcelin, underwear, your fingers if you go a hunting for a stone in a pee bucket (Don't judge me - it happens!), so be sure to thoroughly clean the toilet and anything your urine touches after each use. You will need a cleaner with bleach to help re-whiten the toilet. For women; be sure to use a thin pad because vaginal secretions will be effected the same way. I didn't experience any negative side effects on Pyridium.

Detrol LA is normally prescribed for women who deal with incontinence or the need to urinate frequently. In this case, it keeps our bladders from spasming constantly due to the stent. This drug kills two birds with one stone; the pain that comes with bladder spasms will lessen dramatically, and you won't feel the urge to pee every 15 minutes. When you do urinate, the Pyridum will come into effect and the stinging won't be as bad. That's why these two drugs are great to take together.

Detrol LA did cause irritating side effects on the first day I took it. First, my eyes felt like they were heavy and it hurt to move them naturally. My vision was also a little blurry. They didn't necessarially feel dry like the pamphlet from the drug store warned. Also I got one heck of a headache, but not a total migraine. Lastly, I experienced slight nausea. All of these are noted side effects. Despite the comfort issue with the side effects, it did its job and within hours the bladder spasms were gone.

All of the drugs in the world won't stop you from accidentially tugging on a stent string! You can have the urologist cut the string off after it is placed. This is especially handy if you are a female due to wiping after urination. Also, there's no risk of tugging on the string, thereby shifting the stent, causing severe pain a million times worse than any stone.

The only drawback to having the string taken out is that the urologist will have to remove the stent using a cystoscope instead of just pulling it out. In all honesty, your urethra is numbed up beforehand, and you can hardly feel the scope going in. When it comes out, the pain is no better or worse than having your doc pull it out by the string. Trust me - I've had eight stents, and only two had strings. I'd rather deal with the minor discomfort of a cystoscopic removal than have to constantly worry about patting dry after peeing, and accidentially yanking on it in the shower.

When all else fails and you're still in pain, try taking a hot bath. Do not use bubble bath or oils as it may cause an infection in your already irritated urethra. The warm water does wonders for stent pain and your stress level.

Stents are never fun, but they are a necessary evil after stone removals. The one time I didn't receive a stent, I had extreme pain, nausea, a fever and went into acute kidney failure quicker than a wink all thanks to a post-op blood clot in my ureter that wouldn't pass.

You know something ain't right when you have to use the hick maneuver for a few seconds after peeing to keep from passing out because of unimaginable pain. He wants me to go through this every half-hour for 4 weeks? Ya, right. My old doc took the stent out the same day the last time this happened.

Something's telling me my Mother-in-law and I are going to have the ultimate bonding experience this weekend, one filled with rubber gloves and lots of alcoholic drinks beforehand.

So, Wednesday I had my 2nd ever ESWL and my 8th stent. This time, the ESWL went perfectly! I woke up pain free in regard to my kidney and renal pelvis. This stent, however, is as bad as that one other bad one I had a couple years ago.

I'm not sure if I had this blog up or not at the time of that one stent gone wrong. Basically, stents suck no matter how you look at it, and there will always be some pain involved, but this pain makes me think the stent shifted some.

I have to pee every half hour, and as of this morning, as soon as my bladder is emptied, I get this 8-9/10 pain for 10-15 seconds, and it feels like someone is ripping my kidneys right out of my body. More specifically, once it's emptied, it feels like my kidney is being pulled down, and my bladder is being pulled up, but I feel this pain sort of in my front - not in the flank. Ugh. Hard to describe.

So this morning my Mother-in-law drove me all the way down to Stanford for an X-ray and I'm still waiting to hear back from the doctor, who probably thinks I'm crazy by the way he's dismissing my pain.

Thank gawd for pyridium though... Without it I'd still be on vicodin for the constant pain and burning caused by the stent in my bladder and urethra. Battery is dying - more later.

Hi Everyone,

Well, I'm finally in California and my husband has left for Japan...twice. He came home for a military conference about 4 weeks after he left. But he's gone again. I might have mentioned that I've been having back problems including leg pain and numbness. Turns out I have a huge disc herniation and I was scheduled for surgery next month.

Well, right on time, cystinuria reared its ugly head. I've been taking my thiola on and off during the move - about 50% of the time. Bad, I know. I made an appointment with my new Stanford urologist, and he set me up for a CT scan just so he could see where I'm at. Turns out I have a bunch of stones, mostly on the left.

There's a 4x6x11 stone in my left renal pelvis...yay, my best friend (my renal pelvis and I don't get along if you haven't been following). I also have a 7mm stone in the lower infundibulum on the left. There are also 4 other 3mm stones scattered in the left kidney. There are tiny stones in the right kidney that can't be measured. Yay! They should pass. No stones in the ureter.

So, yes, I knew I had a stone on the left. Over the past month, I've had two instances of moderate flank pain. Nothing bad at all, just a pesky knock on the door like that cockroach in the Terminex commercial. This is the first time I've had pain and there hasn't been any stones in the ureter, so I officially thumb my nose to all urologists who say you can't feel stones/pain in the kidneys. Maybe my renal pelvis is extra sensitive after my last eswl gone wrong.

Since everything is lodged in the kidneys, I'm going in for my second eswl. My new doc knew I hated those with every ounce of my being, but what can you do? I may or may not get a stent, but as of right now, everyone is saying I'll be getting general anesthesia, to which I say pffFFFft. Hells no. They just don't know my history with that nastiness. If they do, I'm demanding an overnight stay at the hospital. It's either that or puke in my MIL's car the whole way home and for the next 24 hours. I don't want to go through that hell, plus the pain without my husband here. No thank you. The stone clinic I'll be headed too isn't even local. :/

Tomorrow I'm gonna call Beaufort Memorial Hospital's anesthesiologist dept to see if I can get my records faxed over or something. last time I had a spinal and sedation, something started going funny with my heart and they had to give me some kind of medication. They are real secretive about all that, so while I don't know what happened (assuming my heart rate slowed down too much) but I had a dry mouth, and the doc said it was typical with that medication. Sill, I'd rather have that drama than go through general.

My surgery is scheduled for Aug 19th.