looking to talk
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i have had about 4-5 kidney stones since 2012 and i am now 20. ive been so paranoid recently about what i eat because im scared of getting another one. i was finally able to see a urologist earlier today hoping this would give me some answers so i could start eating again. he did an ultrasound and told me i have a 2 mm kidney stone on my right side. im pretty sure it is still in my kidney. once it moves out will it hurt really bad? the one i had before this was april 2016. im so scared im going to end up back in the ER most of the times when i get them i wake up with pain in the middle of the night and have to go. could this be because i was dehydrated? does this mean at some point ill be in excruciating pain again and have to go to the ER im really scared of eating anything now since i dont know what kind of stones i have had in the past i assumed calcium oxalate because i drank a lot of iced tea. but i stopped right after i had one in 2016 i might have had it one or two times since then but im not sure. i suffer from anxiety/panic disorder and just feel very scared. its at the point where i dont want to eat because im terrified of it getting bigger and needing surgery. any advice? 😞
0 likes, 13 replies
elizabeth03619 jessxo
Posted
Aweee you can't live in fear. I'm surprised the Dr didn't go over what foods to stay away from. I was told to stay away from salty foods. I like yourself contributed my stones to drinking coke. It's been 2 years since I've had a nice cold coke. I swore after my last stone I would never drink it again. He told me I need to drink a lot of water. At least 2 liters a day, which I find impossible to do. It could be years before you pass the one you have. Just stay well hydrated. Stay away from salt, coffee, dark pop, teas.
jessxo elizabeth03619
Posted
me too! ive loved iced tea my whole life but after my stone in 2016 i had enough😫 thanks for this it means a lot, i will definitely do that! he did give me a list but i had already seen the exact same list online so im not sure how accurate it is.
elizabeth03619 jessxo
Posted
I've actually went through a period where I kept drinking water for a month straight and i flushed a few stones without feeling all the pain. So water is the key. You'll be fine. If you have any questions don't hesitate to contact me!
jessxo elizabeth03619
Posted
Luna_Sea jessxo
Posted
I also have a panic disorder, but it's mostly under control and has been for quite a few years now. There is nothing wrong with taking meds for it. Also, explore yoga, meditation and awareness of breath. They are helpful and can be life changers for people suffering with a panic disorder. Restorative yoga was especially helpful.
I've had shockwave lithotripsy once, had to go to the ER when I suddenly passed 4 stones, each one 4mm (very painful. Morphine did nothing for the pain. I didn't feel relief until they gave me dilaudid). Sent home to pass 2 more of equal size within the week. Those didn't hurt at all because of the flomax and hydrocodone (which is why I keep a hydrocodone stash...I will be prepared next time). Four months later I found out I had another large one and had a uretorscopy with laser lithotripsy. I think I have more...some jabby pains here and there, but I go in for a recheck in February. I've been taking Chanca piedra because some people say it breaks stones up. No idea if this is true, but it's worth a try. If I don't have stones at my next appointment, I might start believing.
The diet info is too confusing for me and my urologist doesn't even hold much stock in it's effectiveness. He told me water was the defining issue and drinking as much as possible. I asked him how to make water more palatable when I'm not thirsty and his not very amusing reply was to think about the next kidney stone. Unfortunately that was not helpful because I'm still not drinking the minimum 130oz he said I needed. It's really difficult to drink anything if I'm not thirsty.
As far as food, I do avoid spinach (which I love) and some of the super high oxalates. But I still eat chocolate on occasion and I'm not giving up soy sauce (though I do use low sodium now). I'm bad about getting enough calcium (lactose intolerant). I just need to work on increasing water intake every day.
Don't let the procedures scare you. I know it's hard. Take them as they come. I hate the stent, but I've figured out how to make it tolerable for me. The rest of it wasn't even a big deal. If they took the stent completely out of the equation, I wouldn't have any fears about the procedures I've had.
You have a 2mm. Get some Flomax, a prescription anti-inflammatory, drink a ton of lemon water and walk around. You want to get it out if you can. Mine sit in my kidneys and accumulate sediment the longer they are there and get too big to pass. Lay in positions that encourage it to exit the kidney. If in your left, lay on your right side. Everyone is different, but I've known a few people that passed 3mm and smaller with no trouble at all. I'm not even sure my 4mm's would have been so bad if there hadn't been 4 of them at the same time.
Keep positive. I used to be down about this, but now I'm trying to take them as they come. Control what I can and let the rest land where it may. If I have more stones in February, my urologist and I will deal with them. And maybe at some point I will decide my love of high sodium Asian food (Pho, Ramen shops, sushi, Thai...ugh, why must I love you so?) is not worth the consequences. I'm not there yet, though.
jessxo Luna_Sea
Posted
hahaha thanks for this! i have tried contacting the urologist multiple times today and it keeps saying lines are busy. definitely will be going to get a second opinion on monday and hopefully some more testing to figure out the kind of stones. and some medicine to have incase! i’ve read about chanca piedra actually, please let me know how it works for you maybe ill give it a try. the thought of a stent scares the crap out of me 😖 but i hope your visit in february goes well. hoping i can find a urologist who will want to keep up with me and help as much as they can. my stone in 2016 was a 4mm and i was able to pass it, i think in the past ive only really noticed pain because i was dehydrated and ended up at the hospital, but not really sure if that makes a difference or not, im drinking as much water as i can get down now. im going to try my hardest to stay positive, i wil definitely feel better once i see a more involved urologist. thanks so much for your help and best wishes on your visit in february!
ele101 jessxo
Posted
Hello Jess, I'm around the same age as you, and although I haven't had repeated kidney stones I do have one very large 1.5cm in my right kidney. I have had pain for many years, and I have also been said to have had anxiety at one point, however I actually dismissed it because I knew anyone else in my position would be feeling equally anxious and fed up; it's not nice feeling out of control for so long. In terms of eating, make sure you eat anything nutritious you can get your hands on, and make sure you do it as often as you can. The last thing you need is to be low on energy as well. As long as you don't eat a lot of one thing, you should be fine. Also listening to what foods you should stay away from is a good bet, but I've just cut down on the things I used to binge on (mostly dairy products... I used to drink a lot of milk!). Make sure you have someone who helps you with food. It's very important when you are low to just keep to the basics. Food, water, sleep, and TLC. Also, when thinking about the pain, try not to expect the worst. Stay as neutral as possible. It's easy to say I know, but honestly, when this has gone away you will forget that you had many of these anxieties, and you may even wonder why you had them. Often, the anxieties are the worst part about long term chronic illness, as there seems to be no end. All you can do, is just make sure you give yourself the best fighting chance. Stay well, and hope to hear from you soon!
E x
jessxo ele101
Posted
hi!
i am so sorry to hear about what you’ve been going through.
i’ve felt very alone throughout all of this, i have been eating a lot of rice lately since i read that was okay, i’m not sure how accurate that is though. i will change it up a bit and continue drinking lots of water, i used to drink lots of iced tea but after my stone in 2016 i stopped, which is why its confusing me as to why i have another one not long after.. i did continue drinking green tea but ive been told that was okay. i found a new urologist and went to see him yesterday, i like him very much! he has ordered a 24 urine collection to see what the problem is. as well as a CT scan and some blood work, im not sure if getting another CT scan is the best choice since i’ve had around 4 at only 20, but also the doctor said that it’s possible the other doctor missed a stone or was wrong about the size on the ultrasound, that’s what im scared of the most.
thank you so much for your positive message ele, i will never be able to show you how much it means to me, all this anxiety is so exhausting. i will keep you updated i really hope you will do the same, it would be nice to have someone to be able to go to with this stuff!
thanks again 😊
ele101 jessxo
Posted
Hi Jess,
It's great to hear from you so soon. I understand that having to go through this repeatedly can be so exhausting and it seems like a losing battle, especially when it isn't an obvious illness; when it's something so hidden. I heard that some people are just more prone to creating stones, and are nicknamed 'stoners', which sounds pretty hilariously dodgy. Finding black humour when your struggling is another thing that can keep people going; it's the little things.
In terms of water, you are definitely doing the right thing. I've kept away completely from caffeine and alcohol and carbonated drinks, as I can tell they are a no-go zone. Sometimes you can just tell what to keep away from. Keeping your food as natural as possible is important, but make sure you are not starving yourself or making yourself ill because of your worry for food. Your body has ways of telling you what you do and don't need. Maybe you should back track again and see what foods and drinks affect you?
Anyway, I've done the 24 hour urine collection, and I didn't get a reply! D: So I'm still kind of waiting around, but to be honest, I don't really think it makes much difference when the stone is so big as to what you eat -_-'' As long as you're not binging.
You've had 4 CT scans? Oh my word. When I had my one scan, they were even reluctant then to put me through it because of the low dosage of radiation. Honestly, there are other ways of telling roughly how big a stone is, but a CT scan is much more precise. With the ultrasound I found out that the stone was around 1cm, and it was fascinating as I could see the blacked out area on the display myself. With the CT scan it was more accurate (to the millimetre) however they only do it to make sure it's not causing any blockage to the ureter - or to make sure it's around the right size for a particular procedure - and then they take things from there. Be careful with how many CT scans you have. To be honest, the fact that they have put you through so many annoys me, and I'd personally be anxious about having more. With smaller stones, and if you've had them repeatedly, they should be able to just zap them. It is tricky though as they have to know how to go about this to cause you the least pain, and that means that the scan is necessary to see how to approach it in the best way. Doctors sometimes have to make tricky decisions and compromises to get results. I'm sorry, I'm probably writing a lot! I've just had so much information thrown at me over a long period of time, so it's nice to be able to help someone a bit with it.
Feel free to pop up if you have any further anxieties,
stay strong!
E x
jessxo ele101
Posted
i got my kit for the urine collection in the mail and will be doing it at the end of this month along with the blood work and everything (have to wait since i dont drive and i know you have a time limit with turning the samples in to the lab.) i mentioned my concerns about everything to the receptionist and she told me she was going to get all of my records from the hospitals and call me back along with mentioning my concerns about the CT scans. i was doing okay anxiety wise and eating kind of normally but then i read about stones growing rapidly and i scared myself again
how are things with you? did you get back the results yet?
the humor definitely helps make light of the situation, it feels good to laugh! im sorry if my constant worry is becoming irritating, i hope im not annoying you too much.
best wishes
- jess
Assassin1999 jessxo
Posted
I realize I am a little late tot he party here, but just wanted to say that it's all about the water! As far as the dieting stuff........there's too much stuff that contradicts the other stuff. You have a lot of life left to live, and not to get all paternal on you but, kidney stones are just the kind of thing that can cast a shadow over your whole life. No harm in being on meds for anxiety (I once was), but you also need to focus mentally. If you feel good one day, try not to anticipate what the next day may hold. You may end up ruining a perfectly good day. I believe if you drink as much water as you can stand each day, and only have other drinks in moderation, then you will prevail. They say spinach and rhubarb are the two worst things for calcium oxalate stones. They are at the top of the "do not eat" list, but they are far above #3. So, unless you will really miss rhubarb pie or spinach, then don't eat them and drink water every day. You should be fine. You can't sit and wonder if another stone is around the corner. It's very hard, but please don't let it define your life. I am sorry if it sounds harsh........I really do feel for you though........
jessxo Assassin1999
Posted
if it continues like it has i might have to start looking more into medication, i have stayed away for it for so long because of a psychiatrist who was terribke at his job and pretty much told me to grow up and that i was “too young” to be feeling the way i was. it’s so hard to find the right person to see about these things.
Assassin1999 jessxo
Posted
That's interesting because I was 20 when I first got on anti-anxiety meds. My doctor at the time said it was not unusual for a young person to have that level of anxiety. The fact is, I have mellowed more as I've gotten older. I have learned how to deal with some of the things that were stressing me out back then, so yes, you had a terrible psychiatrist indeed! Telling someone that their feelings and physical/mental symptoms are invalid is a big no-no. Any psychiatrist with a single brain cell knows that. Hope you don't see him/her anymore....