Crohn's Disease Forum » Extra Intestinal Manifestations » Renal Papillary Necrosis... Kidney issues...

12-11-2011, 06:31 PM   #1
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Renal Papillary Necrosis... Kidney issues...

Hi everyone,

I have read quite a bit about crohns & kidney stones, however I have a different kind of kidney problem!

I was diagnosed with mild crohns in February of this year, however by april I started having instances of SEVERE flank pain on my right side & blood in the urine. Of course the ER automatically assumed kidney stones, however, despite numerous MRI's xrays and ultrasounds no stone was ever found, still I continued to present to the emergency department every few weeks with the severe pain and frank hematuria.

Last month I presented to the ER once again with severe pain & hematuria , they did a contrast xray and discovered a blockage in my right kidney. They did a scope and discovered that several of my kidneys papillary had died and were blocking the urine from leaving my kidney. They put in a stent to unblock the kidney which had to be removed 2 weeks later due to severe infection, 6 days in hospital on IV antibiotics and fluids later, I got out of hospital and am just waiting for yet another episode....

Heres the real mystery of it all... Renal papillary necrosis is so rare in people under the age of 65 that I am the FIRST case my specialists (and their collegues) have EVER seen in a 28 year old... AND renal papillary necrosis normally effects BOTH kidneys... Not just one...

I am being bounced from urology specialists to renal specialists And back again, meanwhile due to these extra issues my gastroenterologist is starting to wonder if my crohns is in fact something else....

Has anyone had or heard of a similar issue before??

Dx Jan 2011 Crohn's disease Terminal illium & Colon
Dx October 2011 Renal Papillary Necrosis

Meds: Entocort/Budesonide 6mg
Oxycodone (for strong pain)
Pramin (for nausea)

12-11-2011, 07:15 PM   #2
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I did have renal impairement when I was a teenager coupled with a renal infarctus. I don't think it is similar to what you have right now though as, if I can remember right, papillary are more central and my problem was peripheric. Do you take a lot of acetaminophen?
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
12-11-2011, 08:29 PM   #3
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Join Date: May 2010
Location: New South Wales, Australia
Hydronephrosis is not uncommon in those with active ileal Crohn's. The swollen and inflamed TI presses against the right ureter causing obstruction, as a result the urine backs up into the renal pelvis and the kidney swells. It can lead to filtration issues, infection/sepsis and renal failure.

Both of my children suffered with hydronephrosis in varying degrees but it resolved once the inflammation in the TI was dealt with. Long term damage can be done though if the obsrtruction is present for longer than 6 weeks.

I wonder if you could you have had hydronephrosis going on for quite a while and the papillary necrosis is a complication of it rather than the other way round

Dusty. xxx
Mum of 2 kids with Crohn's.
01-06-2012, 08:45 AM   #4
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It may be possible!!! I will pitch that one to the renal specialist that I am scheduled to see this coming Tuesday!!! thank you for the suggestion & I hope that your kids are feeling better!!!!

10-22-2012, 04:17 PM   #5
Join Date: Oct 2012

I am having an experience similar to you. I have not have serious side effects but I do have blood in the urine with constant light abdominal/groin pain on the right side with a back pain in the area of the kidney after activity. The urologist said he saw abnormalities or some blockage in my ureter from a possible renal papillary necrosis. No stones, no tumors, and I was just told to stay hydrated. I do not have diabetes or abuse any drugs. Some light drinking (2 or 3 a night) and smoking (1-2 packs a week), an occasional ibuprofen (at most once a week). After drinking 3 beers I woke up in a sweat... so now no more alcohol. I am early in my process with doctors but would be interested in any diagnosis you may have had. I was thinking possible complications caused from hernia but I don't know. I do not want my situation to possibly get as serious as yours may be. I am 38 now. I hope you see this reply.

04-07-2014, 10:10 PM   #6
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Join Date: Apr 2014
Location: Texas
Oh my I'm so sorry for your pain, but yes it is uncommon to see in someone so young actually. Somehow I was diagnosed with papillary necrosis too in only one kidney when I was 15. It's weird what can happen I guess. Hope you're doing better though!

Crohn's Disease Forum » Extra Intestinal Manifestations » Renal Papillary Necrosis... Kidney issues...
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