Blood in the Urine & Pain but no kidney stone

[JJ_777]

Hi everyone...

I have just returned home from a 4 day hospital stay... Ill give you a quick run down on what landed me there....

1. 5 Weeks ago I woke up at 6 am with stomach pain & D... Normal for me.. however around 10 mins later I had THE MOST severe pain I had ever encountered in my life! It was in my right side radiating into my groin.,., I took some strong pain killers and threw myself in the shower.. 10 mins following that I started to pee almost straight blood... I went to the ER who did some scans but could not find ANYTHING... It was decided that it may have been a kidney stone.. (not prooven) and so I was sent home with pain killers... but no answers...

2. Last Monday the same thing happened but the pain was not as severe... I went to the ER and again they found NOTHING.... I was again sent home with pain killers & no diagnosis...

3. Sunday Morning I woke up at 5:30am with more severe pain in the right side and the groin.... I took pain killers and waited for the blood in the urine... which came around 30 mins later with more blinding pain... I was rushed back to the ER.. the pain this time was worse than the previous 2 times combines and I cried all the way into the hospital...

I was given copious amounts of morphine which worked for about 20 mins before it wore off... in the end I had to be given a self administrating IV morphine machine... The pain FINALLY went... but the nausea kicked in... and so I was making several trips to the toilet to vomit...

I was given a CT scan.,, X-RAY and an ultrasound and STILL nothing was found... I was kept in hospital for four days and 3 nights on IV fluids ( i was very dehydrated and too nauseas to eat) while they kept looking for answers... I had what they called 'rigors' while I was in hospital.. (boughts of uncontrollable shaking & sweating while feeling freezing cold...) which is the body;s response to an infection... but all of my blood and urine tests were clear for infection... and my temperature normal....

In the end they found no answers and I was sent home with a diagnosis of..."diagnostic mystery" by the hospital urologists....

I am concerned that this will happen again and I was wondering if anyone has been through anything similar

I would appreciate and ideas or feedback that I can suggest to the urologists when I go back to see them in a few weeks....

Is it not bad enough to have crohn;s without random severe pain and blood in the urine WITHOUT kidney stones!!!

JJ

 

[Jennifer]

Only thing I've read for other possibilities besides stones are blood clots, bladder cancer, Alport syndrome, Sickle cell anemia, kidney injury (from an accident or contact sport), tumors, drugs like aspirin, penicillin, the blood thinner heparin and the anti-cancer drug cyclophosphamide (Cytoxan) and even intense workouts (may be trauma to the bladder, dehydration or the breakdown of red blood cells that occurs with sustained aerobic exercise). You may need to have an MRI done and a cystoscopy (scope for the bladder) to rule out cancer.

Here are a couple of sites I found:
http://www.uihealthcare.com/topics/medicaldepartments/urology/bloodinurine/index.html
"Visible urinary bleeding may be a sign of advanced kidney, bladder or prostate cancer." http://www.mayoclinic.com/health/blood-in-urine/DS01013/DSECTION=causes
http://www.nlm.nih.gov/medlineplus/ency/article/003138.htm

I've never dealt with that myself sorry.

 

[DustyKat]

How well controlled is your Crohns?

Dusty. xxx

 

[Grumbletum]

The onset of my Crohns was almost exactly as you describe, without as much blood in my urine. The GPs tested me for UTIs and sometimes they tested positive for blood and infection and sometimes not.
I still have bladder urgency/ frequency and my urine is often cloudy and fizzy looking.
I'm having a CT scan on Tuesday to check for fistulas etc.
I'm sorry, it must be very frustrating for you to have had no answers from the hospital. I guess keeping a detailed diary of your symptoms everyday til you see them again would be useful.
I do hope they can help you. Keep in touch and let us know how you get on.

 

[JJ_777]

Only thing I've read for other possibilities besides stones are blood clots, bladder cancer, Alport syndrome, Sickle cell anemia, kidney injury (from an accident or contact sport), tumors, drugs like aspirin, penicillin, the blood thinner heparin and the anti-cancer drug cyclophosphamide (Cytoxan) and even intense workouts (may be trauma to the bladder, dehydration or the breakdown of red blood cells that occurs with sustained aerobic exercise). You may need to have an MRI done and a cystoscopy (scope for the bladder) to rule out cancer.

Here are a couple of sites I found:
http://www.uihealthcare.com/topics/medicaldepartments/urology/bloodinurine/index.html
"Visible urinary bleeding may be a sign of advanced kidney, bladder or prostate cancer." http://www.mayoclinic.com/health/blood-in-urine/DS01013/DSECTION=causes
http://www.nlm.nih.gov/medlineplus/ency/article/003138.htm

I've never dealt with that myself sorry.

Thanks for your reply & research!
Sounds promising lol!!!! I have an appointment with a Urologist next week... fingers crossed its nothing sinister....

 

[JJ_777]

How well controlled is your Crohns?

Dusty. xxx

Not very at the moment I'm afrain Dusty... I seem to be in a small remision.... but only by chance... they are looking at changing my meds to Budesonide in a few weeks to try and get it under control...

 

[JJ_777]

The onset of my Crohns was almost exactly as you describe, without as much blood in my urine. The GPs tested me for UTIs and sometimes they tested positive for blood and infection and sometimes not.
I still have bladder urgency/ frequency and my urine is often cloudy and fizzy looking.
I'm having a CT scan on Tuesday to check for fistulas etc.
I'm sorry, it must be very frustrating for you to have had no answers from the hospital. I guess keeping a detailed diary of your symptoms everyday til you see them again would be useful.
I do hope they can help you. Keep in touch and let us know how you get on.

Im sorry to hear that you are not well :-( .. I have an appointment with a Urologist next week... I think they might book me in for a cystoscopy to check my urinary system... will keep you posted...

Good luck with your CT... Hope all goes well!!

xxx

 

[DustyKat]

Something to consider...is your inflamed ileum causing problems with your right kidney, ureter.

Both of my children have had issues, that resolved when treated, with the swollen and inflamed ileum obstructing their right kidney. My son was diagnosed quickly so it never became a problem for him. My daughter however suffered with severe pain over the right kidney region and this was the cause.

Dusty. xxx

 

[NikkiP610]

Im currently having the same issue. i had a kidney infection about a week ago and was hospitalized for iv antibiotics and pain control. i came home, after a day or two the symptoms came right back, and so was i back in the hospital. after that discharge i felt ok for about 3 days but that weekend i started spiking fevers, having mad chills, feeling sick to my stomach. i havent eaten a meal in about 3 days now with my right sided flank pain. i was in the er yesterday and they said my urine was clean and no infection was detected. they were looking at me like i was crazy. i have crohns also btw. they did say there WERE red blood cells in my urine. so why would i be having hematuria with flank pain without having a kidney stone and/or kidney infection.....your not alone trust me. im going to see my urologist today and i have a feeling hes going to pass me off to a nephrologist. anybody else have any input or same experience???

 

[Jennifer]

NikkiP610 your urologist should do a scope on your bladder to rule out bladder cancer. After that its very possible they might try to blame it on overactive bladder which mine claims can cause there to be small traces of blood in the urine. I'm not aware of it causing any pain though. Keep investigating till you find the answer.

Since my post above I've had blood in my urine but its only found in urine tests. I'm not in any pain though and have had a couple ultrasounds and a cystoscopy done already. So far everything looks normal and they want to blame it on over active bladder. I will be asking for more testing after I give Vesicare a fair try for three months. After that there shouldn't be anymore blood I'd assume. I've also never had a kidney stone.

 

[JJ_777]

Hi Jennifer and Nikki,

Sorry it took so long to update! My hematuria and flank pain turned out to be a rare kidney disease called renal papillary necrosis, they are not sure what caused it although it is likely that it was caused by the massive doses of Salofalk (pentasa?) I was on at the time.

I no longer have the blood in the urine although I still pass necrotic (dead) tissue that breaks away from my kidney which is insanely painful, and I still get chronic and severe pain in my kidney area daily -- particularly when I am dehydrated-- and I also pass protein in my urine regularly.

Have your doctors worked out what is causing your problems yet? If not it might not hurt to request a cystoscopy to rule out renal papillary necrosis!

I hope you are both well xxx

JJ

 

[sickinlk]

next time you have this pain, pee through a sieve and it should catch the stone if there is any. kidney stones are hard to prove once they are passed. did they notice any scarring on your ducts with the scans.
ju

woah sorry, I didn't see the above post. that's crazy. whats the prognosis with this disease. will you need a transplant?

 

[ron50]

Hi JJ my sympathies with the kidneys. I have had three biopsies so far. They can tell me what I havent got but they can't put a name to what i have . Because I have had other ca they have done the full rundown on bladder ca ,kidney and urinry tract infections.ect ect. I have had several episodes of renal colic . They think they are small uric acid stones. Sharp little buggers .lots of pain and scratching and quite a bit of blood. My biggest problem is the protein. It has climbed above 4 grams a day that I am losing. I see a rheumatologist on wed ,he works with my nephrologist. We are trying for something that will help psoriatic arthritis and protein -urea. Methotrexate did for a while my protein dropped to.4 of a gram,then it stopped working. I think he will try humira and if that does not work the kidney doc is putting me onto cyclosporine. Better than cyclophosphomide but not much.. Hope you get things under control soon. All the best Ron.

 

[JJ_777]

next time you have this pain, pee through a sieve and it should catch the stone if there is any. kidney stones are hard to prove once they are passed. did they notice any scarring on your ducts with the scans.
ju

woah sorry, I didn't see the above post. that's crazy. whats the prognosis with this disease. will you need a transplant?

Hi sicknick,

it's a nasty disease particularly as it can be bought on by taking too many over the counter pain medications -- not difficult for a crohns patient to do -- but I am positive that it was caused by the Salofalk due to the fact that the blood in the urine disappeared as soon as I stopped taking it! As far as a prognosis goes, as long as I don't take any more salofalk (hopefully) it won't get any worse than it is now... A far as it getting better... Well I have had this since 2011 and there doesn't seem to have been much of an improvement.... Transplant is unnecessary at this stage as besides all of the pain and passing of tissue, the kidney is still functioning properly, so I have basically be put into the too hard basket to deal with the pain etc on my own, the urologists and renal doctors are taking the 'wait and see' approach, which sucks... But there is nothing more they can do...

JJ

 

[JJ_777]

Hi JJ my sympathies with the kidneys. I have had three biopsies so far. They can tell me what I havent got but they can't put a name to what i have . Because I have had other ca they have done the full rundown on bladder ca ,kidney and urinry tract infections.ect ect. I have had several episodes of renal colic . They think they are small uric acid stones. Sharp little buggers .lots of pain and scratching and quite a bit of blood. My biggest problem is the protein. It has climbed above 4 grams a day that I am losing. I see a rheumatologist on wed ,he works with my nephrologist. We are trying for something that will help psoriatic arthritis and protein -urea. Methotrexate did for a while my protein dropped to.4 of a gram,then it stopped working. I think he will try humira and if that does not work the kidney doc is putting me onto cyclosporine. Better than cyclophosphomide but not much.. Hope you get things under control soon. All the best Ron.

Hi Ron,

Sounds like you have been through hell and back with the kidney thing too, maybe ask your rheumatologist if renal papillary necrosis is a possibility as the only way to DX is through a contrast X-ray... It's crazy how the body hides things from the doctors, three biopsies and they can't find anything? Best of luck with your rheumatologist appointment, I'd love to know the outcome!

Kind regards

JJ

HD

 

[Jennifer]

If not it might not hurt to request a cystoscopy to rule out renal papillary necrosis!

I had one done. They were looking for any fistulas or cancer etc. They said everything looked great. So far all they said is that overactive bladder can cause there to be traces of blood in the urine. My urologist is treating me with Vesicare and I'll see them again in March to see if its helped at all. I don't know if it would help to get rid of the blood though.

Sorry to hear about your diagnosis and that it causes so much pain.

 

[ron50]

The biopsises have revealed problems but none that fits the pattern of known kidney disease. The most probable cause was 48 sessions of chemo for colon ca plus 10 or so scopes done with fleet prep which has been phased out now because of kidney damage. I think most specialists have been told that chemo does not cause ongoing propblems,trust us we are doctors...Ron.