Medullary Sponge Kidney Disease (MSK) Community
20 years old. Just diagnosed.
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20 years old. Just diagnosed.

Hi,

I am a 20 year old male who was just diagnosed with MSK.  I am currently dealing with the pain of an 8mm stone.  It's the worst pain I've ever had to deal with in my life.  I'm an student away at college, so this is especially difficult for me.  Can anyone give me any pointers on dealing with this?  I'm having a miserable time.  I assume diet will help, but don't know what to eat/drink and what not to eat/drink.  Please, I'd really appreciate any input.

Thank you,
Liam
Tags: MSK, misdiagnosed, Pain, 20 years old
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Avatar_m_tn
Hey,

Two years ago, I was in the exact same situation. I was 20 and away at college when I was diagnosed with MSK as well as my first kidney stone. It took me 6 days to pass it, and I was prescribed Lortab 750s to be taken every four hours. I really hate the effects of pain pills, so I only took them about every 7 or 8 hours. As far as diet, I hate to be the bearer of bad news, but it really depends on the individual. For me, it was water and chicken noodle soup. I was literally unable to keep any food down, so I chose soup because I knew it would be easier when it came back up. I was forcing myself to drink as much water as possible.

The hours or days it takes to pass the entirely pass the stone are awful, but the "passing" of the stone that we men seem to cringe just thinking about is not awful. Upon "passing" the stone, you should be able to expect pain relief within twelve hours. For me, I was back to normal the next day (passed the stone at night just before going to bed).

My tips would be to avoid eating anything thick, because as I already stated, odds are you will be throwing up occasionally if not all the time. My Urologist told me to drink water, so I drank water. Since having that kidney stone two years ago, I have not had anything to drink except water and water with lemon. You could try the lemon as well! They say adding a bit of lemon juice to a cup of water may help "dissolve" the stone as it travels through your body.

Get well soon, and I'm sorry that you have to be a part of this unfortunate group. On the bright side, you aren't alone!

-KJ
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Avatar_m_tn
Thank you so much for your comment!  Regrettably, my stone is too large to pass naturally.  Two weeks ago I had a stent put in the help dilate my insides (I don't know exactly what).  I'm getting surgery again in six days to have the stent removed.  While they're in there, they're going to try and break the stone down because it is twice the passable size, or so they tell me.  So yeah, something to do with a laser will be happening inside me in less than a week.  I suppose I'll ask my doctors what type of food I should specifically stay away from and eat.

Are irregular bowel movements common with this disease?  I've never experienced constipation before I was diagnosed with the kidney stone three weeks ago.  I'm hoping this will pass along with the stone.

Does the pain become bearable after the stone has left your system?  In other words, are you able to go out and perform normal tasks without having pain attacks?

Sorry for being so inquisitive!  I'm just in a lot of pain and a little scared.

-Liam
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Avatar_m_tn
Are you taking pain medication? If so, that would explain the constipation. If not, I am not sure what would be causing it.

After the stone has left your system, at least for me, the pain went away immediately. I recently (a week ago) suffered my second attack, another calcium oxalate stone being passed. It only took two days to pass the stone, but I'm still experiencing tingling sensations on the side it passed from. It was explained to me by my urologist that such pain/sensation is likely the irritation caused from the passing of the stone, and it should be gone by next week.

You are absolutely able to go out and perform normal tasks once you pass the stone. Once they diagnose the type of stone they are removing, they will likely recommend a diet for you to follow to prevent buildup of future stones. If you stick to the diet, you can dramatically reduce the likelihood of stone formations.

Upon passing mine two years ago, I literally went up until last week without any odd pain. Of course I had to give up soft drinks and such, but it's overall better for anyone to hydrate with water than anything else!

Hope things get better soon, and take solace in the fact that many of us have been where you are. The first stone is normally the worst because you aren't sure what's happening. Once you make it through this, you'll be well and ready for any unfortunate future attacks.

-KJ
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I was 19 when I had my first stone surgically removed.  The first stone I had been trying to pass for 3 weeks when another headed now the ureter.  I will never forget the pain of that weekend and yes, once the stone is gone the pain levels get better!Also  your bowels do shut down with obstruction so that too should clear itself.  I had a 10mm stone
at 31 too!  Right now, just focus on pain control and the surgery.  Drink lots of fluids and don't over do with that stent or you can further damage the ureter too,  Soaking in a warm bath helps, along with your pain meds.  If your meds are not controlling your pain you can try requesting a muscle relaxer that you can take al.ong with your other meds and it can increase your pain relief.  Talk to your doctor about this and also maybe alternating Tylenol and advil or NSAID too.

The key here with your age etc. is, if you have been diagnosed with MSK, make sure that once you do pass this stone your given a good round of a multipathogen antibiotic. For many of us with MSK and countless stones, the pathogens set up a low level chronic infection.  In your case, age etc. you have the potential to take so much of
what we learned to prevent the lifetime of pain many of us live with!

The next step is to have a 24 hour urine! Again this is post op.  The best way to get a clear picture is to do a fasting blood and urine test, then for them to give you a good dose of calcium etc. so they can watch your levels and see what goes into your blood or like many of us is dumped into your kidneys.  Then get your Vit D levels checked and keep up on making sure you keep it in the normal range of 30-80. 50 is best.  Also taking magnesium and B6 can help prevent stone formation since they compete for calium oxalte in the urine..., hang in there and keep us posted!
Shelly
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Avatar_f_tn
Hey.  I've just joined this blog as well.  I read your question and wanted to share with you a few pointers that has helped me.  I am a 30 year female who has been battling stones since 18.  I've had a baby and, yes!, its much easier to have a baby than pass these damn stones.  LOL!  Anyway, bowel habits can change with MSK as well cause other bowel diseases.  As far as something that will help is the most important thing is drinking water.  You want at least a urine output of 2 liters which means you need to drink around 3 to 4 liters of water (liquid) a day.   Orange juice is really good too.  Lemon water is a good diurectic to help you pee but orange juice can help in breaking the stones up as they contain the citric acid that is needed to break the stones.  Also, low salt and protein diet.  Like others have said, it does depend on the person as to what will help them but these are common denominators I have come in contact with since my voyage on this ride of stones.  Most people have at least one during their life.  However, if you are young and continue to have them, then there is something wrong and need to get checked out.  Sorry you are having so much problems with this while in college.  Hope the lipo helps in breaking it up and you have a less painful experience in passing the fragments.  Good Luck to ya!  I am not recommending this at all but will tell you that when I feel a stone moving, I am constantly moving, walking which helps the passing much easier and sometimes I even get on my John Deer and cut grass as fast as I can and bounce the mess out of myself to knock 'em loose.  Not recommending it just stating something that has always helped me.  :)
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