Undiagnosed Chronic Kidney Stones Flare-ups
Jan 6, 2015
I'm 16 years old and suffering from what I've been told is medullary sponge kidney disease. I have been to countless doctors, including the mayo clinic in Jacksonville, Florida, Children's hospital in St. Louis, and many local hospitals. Every doctor that I've seen has thrown around many ideas of what my disease "could" be, but none of them have ever actually diagnosed me. It started out as a kidney stone two years ago, had gotten better on and off for the past two years. I had always had at least one kidney stone every six months or so. We call my kidney stone's "flare-ups" because when I get them, it is impossible for me to control the pain without being hospitalized. Also, the doctors have said they are not entirely sure that my pain is kidney stones. The pain is a burning, stabbing pain that goes down my right backside and to my lower stomach on the right side. The stones are calcium-oxalate and are usually small. In the past six months, I have been passing a steady amount of "gravel" in my urine, which is basically small stones. Therefore, I am in pain all of the time. I have been put on countless medicines such as potassium citrate and hydrochlorothiazide. Not to mention the pain medicines, I have found that only Percocet and Norco can even touch the pain. And Phenergan helps with the nausea sometimes. I throw up from the pain almost every other day; Some days I am unable to get out of the bed, eat, walk, and keep anything down. On top of all of that, I am unable to urinate on my own. I have to use a straight catheter 4-5 times a day. I have been unable to go to school, and have been put on homebound through my school. All of this has been very frustrating and we basically have no answers. I have recently had a cystoscopy to look at my bladder and ureter. The doctor said it was completely normal, other than that my ureter tube is smaller than normal. I need some way to cope with my pain and get a better quality of life.
View 4 Replies
I have RA, fibromyalgia, and diabetes II. I have been dealing with kidney stones for 10 years. The last 4 years have involved kidney infections and hospitalization. Last year I was near sepsis and placed in the ICU. Since then I have been experiencing RA/Fibro flare-ups that are worsening. I have had mono 3 times (infancy, twenties, and early thirties). I am wondering if I have it again and whether the kidney infections caused it or were a result of the EBV in my system.
View 1 Replies
This is embarrassing but I've been experiencing haemorrhoids on and off for at least 2 years now. I think they are external. They are big and blue. When they flare up I have chronic pain and some itchiness. They don't often bleed though. I am a 20 year old female. Two Drs have told me to increase the fibre my diet. One said to drink 3L of water per day. Clearly I haven't been very successful.
View 2 Replies
My question is what do you do to relieve the pain when you have bad haemorrhoids? I have bought Retinol cream but one of the Drs told me not to use it, I'm not entirely sure why. Also, at what point do you know if you need surgery for haemorrhoids?
I was just wondering if anyone has protein in their urine with Chronic Kidney Disease and what did your doctor do about it if anything. I am trying to keep my GFR stable. The last time it went up a bit but am worried about the protein causing more damage quicker.
View 5 Replies
Is it me or is this stuff a waste of time?
View 1 Replies
I've had obout 20 lithotripsy's in 15 years of having continuous stones. They've never gotten my kidney completely empty of stones ever. I've had lithos, ureterscopy, PCNL. On meds but they can't seem to stop them from growing. I avoid alot of the things that cause stones or limit them. Got to have the 1 cup of coffee in the morning
On the day before litho, your suppose to eat light ( nothing that leaves residue in bowl) but they say you can have white bread or boiled chicken. (Why bother?) I usually only eat jello, gatorade, and just broth. Plus tons of water. The instructions say to drink the magnesium of citrate after dinner. Well to me dinner is after 6/7. But I thought this time I would take earlier since last time didn't start to move the bowels until i was in the hospital. Plus this stuff is awful- taste bad- even refrigeration like they suggest doesn't really help. Twice in past I threw it up.
So I took at 5 pm thinking it would work earlier. Nope. Nothing. Just stomach cramping and it finally started around 5 am after me getting up every hour during night. Still was working again while in hospital.
There has to be something better (tasting) and work faster. Plus less side effects. Or they should change instructions & say take a noon. Next litho (in 2-3 months) I'm taking a 1/2 day off day before and taking at noon. Maybe then can get a little sleep the night before procedure.
Sorry- felt like ranting as frustrated as its been two full days since litho and nothing passing yet. Plus I have a bad back (2 surgeries) which makes it hard to do the exercises where you drink 2 cups water, wait 30 minutes, then elevate kidney @ 45 degrees and stay like that for 30 minutes to try and get the pieces to move.
Thursday morning I spent the night in the ER with a kidney stone in the left kidney -- when they did a CT Scan - they came and told me that they made an "incidental finding" in the right kidney that is a problem -- they have discovered that I have a "Staghorn" kidney stone that has attached itself and almost completely filled the right kidney. He said that I will not pass it and now my GP has made me an appt. with a Nurse Practitioner at the urologist's office for Tuesday morning to discuss my options. What are my options going to be?
View 1 Replies
A while ago I had kidney stones, I was sent for a scan after, upon returning to my GP for the results of my test, he told me there were calcium deposits in my kidney that could mean I have another on the way, I've been trying to keep well hydrated and doing all I can to prevent a recurrence, because they're damn right evil, I've got away with it for quite a while now, last night I was woke up with the same pain I had when I had kidney stones, I sat on the toilet and waited for the pain so subside, it seems to have gone again for now, I was just wondering if I'm supposed to avoid eating foods rich in calcium, I'm also lactose intolerant and with all this I'm starting to wonder if I'm going to en up deficient in calcium.
View 3 Replies
For the past few years now i have suffered with constant water infections, its always pain in my right side, sometimes i'm sick with it and my back feels like it could break. It can also go into my groin area and down my leg also. I've had CT scans and another type of test which all came back as normal which was last year. I don't understand how it can be nothing as the pain is horrendous and all they do is take a urine sample and give me antibiotics. Does anyone else suffer with this? I wasn't sure if it was when i drank alcohol which is very rare but sometimes i get a water infection and sometimes i don't. The hospital put me on antibiotics for 6 months changing them every 2 months and i still managed to get a water infection on them. I am now having blood tests again and will presume i may have to go for all scans again but just wondered if anyone has had the same problem and had any advice on what it could be or what i could do?
View 28 Replies
I have had severe left flank pain for 3 months now and still not been able to get a diagnosis. I am a 24 year old usually fit female.
View 45 Replies
The pain started towards the end of April while i was in work (an office desk job). It was on my left side in between my hip and ribs, spreading down to my groin. The pain got worse over the next couple of hours, and it has been a constant dull ache since then. The pain is most strong on the back of my left side but i can also feel it from the front.
I went to the doctors with this pain where i done blood and urine tests and got put on antibiotics for a suspected kidney infection, as well as codeine to ease the pain. The results came back with an apparent slight kidney abnormality showing, but a week later, i was still in a lot of pain and unable to move much, so i went back to the doctors where i got referred into hospital. I spent the night in hospital where i had more blood and urine tests, as well as an ultra sound. The hospital told me my results showed a UTI, but the ultrasound was clear, so i got put on another course of antibiotics and sent home. A week later, i was still in a lot of pain so i went back to the doctors where i was put on another (stronger) course of antibiotics for 2 weeks. The pain eased slightly above the groin, but the main pain on my left side was still the same.
My doctor then referred me to gastroenterology at the hospital where i had to wait weeks for an appointment, only to be told that he didn't think it was bowel or stomach related (as i can still eat and pass stools normally) and that i should have been referred to urology.
My doctor referred me to urology where the waiting list was 2 months, so i decided to get a private consultation with a urologist. The consultant done a urine test, which confirmed i had blood present in it. He went over my symptoms and suggested a CT scan in case i had a small kidney stone stuck which had been missed by the ultrasound. He was also concerned at my frequency as passing urine (this is usually over 20 times a day with anywhere between 3 to 8 times through the night). He referred me back to the NHS for the CT scan which i had a few weeks ago.
The CT scan results came back clear of kidney stones. My consultant now thinks the issue could be musculoskeletal but he still wants to see me to do some bladder studies as he is concerned about the frequency of urination. I have an appointment with my urology consultant for a few weeks time, but to see someone to investigate if the pain could be musculoskeletal there is a 3 month waiting list.
I am still in a lot of pain, both when moving and sitting (it never eases), and it is effecting my every day life. I can't go into the office to work due to the amount of pain i am in, i can't drive with it, and i haven't left the house the past few month apart from doctor or hospital visits. I am constantly feeling down and tired, and often get spells of dizziness and my eyes blacking out when i stand up (i am unsure if the tiredness and dizziness is related or not). I had a breakdown the other weekend where i cried for 2 days straight with the pain, the frustration of not being able to get a diagnosis, and not being able to do anything. I am worried that depression is kicking in with how long this has dragged on for.
I had no injury or knock to the area before the pain started. My mums side of the family also has a history of nephritis (kidney disease) with 4 of my aunt and uncles having it, but my urology consultant doesn't think there is a connection.
Is anyone able to provide any help or suggestions on what they think this pain could be as well as how to help ease it (the codeine doesn't help)? I feel like i have been passed around so many different people who still have no idea what is causing this pain.
I know this is probably a place for guys but I cannot find anywhere else to post this ...here it is Last Monday me and my boyfriend went to the ER and they diagnosed him with having kidney stones... he got a cat scan and all that and they said the stone was almost in his bladder... they put him on loratab and flomax i think.... Well Tuesday or Wednesday we did "our" thing and everything was fine well here these past 2 or 3 days if he attempts to get his self off or if I try he cannot cum at all we have tried everything too make him cum and it will not work...
View 1 Replies
I have a kidney stone and I seen on a site where it said sex helped so I tried but when I got off nothing came out everything feels normal but nothing came out ...
View 2 Replies
Is it possible to have kidney stone pain while the stones are still in the kidney? I have about seven stones in my right kidney and five in my left... I've had lower back pain for almost a month straight and nothing makes the pain go away. I'm trying to get my urologist to call me back, but that is next to impossible if I'm not in the emergency room doubled over in pain. Any suggestions/comments are welcome here
View 3 Replies
Had anyone had kidney stones? This is my 3rd child I'm 12+1 weeks. I'm healthy.but in the last 2 weeks I have had 4 kidney stones(on top of being really sick with"morning sickness"). Not kidding it IS worse than having a baby. MY ob said they don't effect the baby at all and pregnant women are more prone to getting them.
View 8 Replies
I have had kidney stones for about 20 years and have had a number of treatments. My right kidney now works at 21% due to scarring and infections. My left is fine, working at 98% with one stone. I do not suffer many symptoms but do get an infection 1-2 times a year (I am experiencing my normal infection pain at the moment). My consultant has discussed removing my right kidney, obviously I have my concerns - will my other kidney be strong enough as I am susceptible to stones etc.
View 1 Replies
I'm a 29 year old female 36 weeks pregnant. Back in January I had a large amount of blood in my urine and some flank pain ( nothing like what most describe with stones) happened again two weeks later so my OB requested a urology work up. I had a full ultrasound which showed mild fluid in my right kidney which is normal in pregnancy. Then sent me off to a urologist for a cystoscopy and two cytologies to look for bladder tumors and Cancer cells. All which were negative. Fast forward to April and again some flank pain with blood in my urine. Urologist wants a CT scan but can't due to pregnancy. So it became a waiting game. May comes along and im having blood every few days with a little more Intense pain lower along my hip and into my pelvis. No back or 'flank' pain per say but now I am urinating large clots and tissue and blood. Went to the hospital they pumped me full of fluids did an ultrasound and saw absolutely nothing and said probably a kidney stone we'll look closer after you have the baby.... Does any of this sound like a kidney stone? They feel it would be a small one since it can't be seen on ultrasound and I am not in excruciating pain. But I'm having a hard time wrapping my head around a 'small' stone causing so much trouble, blood and clots and taking MONTHS to pass... Any thoughts?
View 3 Replies
As a frequent maker of kidney stones (20+yrs) I have for the last 4 years have been operated on approximately every 6 months for stone removal the last 3 times I have been fitted with jj stents which cause me absolutely agony ,I am unable to work with these stents inside me and have now lost my job .am I unusual in having this agony ?the specialists all seem to think I should be able to cope. How long do people put up with the agony before going to a&e?
View 2 Replies
Is it possible to have 2 different types of kidney stones? I had a cat scan and it showed only a stone in the kidney. Is it possible I could have more and they didn't show up?
View 1 Replies
I have had hyperparathyroid surgery. Had 3 of 4 removed. I also have had 3 lithotripsy (sorry about spelling) surgeries. About 2 weeks ago I had kidney scope surgery and blasted 30 stones on each side. Uro said he had never seen so many in one person. I have high oxalates, and slightly elevated sodium. My PTH is 77-106 off and on and my calcium levels are both normal. Uro and Endo are perplexed. I am wondering if it is because I have a malabsorption and a bad digestive system. They just don't know. I am watching my diet and trying to learn how to eat, but I have many food issues so hard to keep a perfect diet. I am scared to death the stones are going to come back. Doing lab and x-ray in 3 months. I want to find a specialist who can tell me why this is happening. I live in Ks but am willing to travel to find a doc who can tell me what is going on. I have also had gallstones. I am just a stone maker. Hate it. I also drink around 3 liters of water a day.
View 1 Replies
I have been passing kidney stones recently. I have had them for a decade or more but only recently started to pass them. I have an appointment next week with my urologist. I also follow up with a psychiatrist whom I have an appointment with next week but overall I am stable. However, every time a kidney stone starts to pass I encounter extreme psychosis and depression. Once they pass and are eliminated this settles.
View 1 Replies
I have a kidney stone lodged at the bottom of the right ureter pole near my bladder that won't pass into my bladder. I have been dealing with the pain of this stone moving for several weeks. My urologist say it is small enough to pass (4mm). Meanwhile I'm on pain meds and anti nausea medication. My health insurance kicks in January 1st and if it hasn't passed by the my doctor will remove it. I understand that process is as uncomfortable as the stone's movement. I have esophageal lesions and a gastric ulcer so drinking anything with lemon juice to help the stone pass is unheard of. (I read some people do that). My worst pain is in my back at the area my doctor calls the right flank; and also lower. I am also having pain in the front of my left side but I'm not sure if that's related. Has anyone had to deal with waiting for a stone to pass for this length of time. I'm miserable.
View 10 Replies
About a year ago, I had a kidney stone, and stent put in. I thought the stent would help me pass the stone. The Dr. said that wouldn't happen, removed the stent 6 weeks later, saying he thinks I still have it. To my knowledge I have not passed a stone, people say if I did I would feel it. I am now having pain, like a kidney infection, am a little worried it could be this stone. The Dr. said it would make me really sick if I don't pass it. It does hurt on the left, where the stone was located, but not like before. I don't have insurance and can't afford another ultrasound. has anyone passed a stone with stent in place? I think I passed it when I had the stent and just have an infection.
View 1 Replies