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05-10-2013, 11:03 PM   #1
Twosons
 
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Hydronephrosis

Ev has had a very terrible night. His heart rate and blood pressure went crazy, pain, nausea and headache that hit so suddenly they called a code and for 30 minutes he was surrounded. Once he was stable they took him for an emergency CT and found fluid on his kidneys and an issue with his bladder. Tomorrow brings many new tests and doctors. Tonight he's on morphine and finally resting.

Sorry if I'm leaving this half done. I'm so tired. Praying my husband can get here tomorrow.
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05-10-2013, 11:48 PM   #2
upsetmom
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..I'm so sorry to hear this..
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05-11-2013, 01:03 AM   #3
Patricia56
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I'm so sorry he is going through so much. You must be scared to death.

I also hope your husband is able to get there soon.

Don't know if you need this but here's a link to info on hydronephrosis.

http://www.medicinenet.com/hydronephrosis/article.htm
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Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
05-11-2013, 02:32 AM   #4
Sascot
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Sorry to hear that! I really hope they manage to help him soon so he can start feeling better.
05-11-2013, 04:53 AM   #5
DustyKat
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Hey Twosons...

What a difficult and heartbreaking time you and your lad are having, my heart goes out to you.

Both of my children have had hydronephrosis, affecting the right kidney, in varying degrees. Sarah's was worse than Matt's and it resolved when their intestinal inflammation was brought under control. This is an old post of mine...

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 obstruction 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
...I know there are there are other members here, and kids, that have had issues with hydronephrosis. I will tag Crohn's Mom and AZMOM as I'm sure Gab and Claire did??

Good luck with the tests today! I hope more than anything it is easily resolved and your boy is soon feeling better, bless him.

Dusty. xxx
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05-11-2013, 08:39 AM   #6
ChampsMom
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Sending more prayers, more hugs and more positive energy your way... Hope you husband gets there soon!!
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Shell

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Dx: CD April 2010
Meds: 04/25/13 switched back to Pentasa 3,500mg/day - Lialda brought lower abdominal cramps & exhaustion); 04/05/13 switched to Lialda 1.2GM 3 pills/day verse Pentasa 3,500mg/day, prevasaid 15 mg x 1/day, elemental iron, daily vitamin, calcium w/mag D, 50,000 mg Vitamin D/week, B12, B6 supplements, Cetrizine (for sinus issues)
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05-11-2013, 08:52 AM   #7
Farmwife
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So sorry for all he's going through. He's definitely on my prayer list.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
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05-11-2013, 09:58 AM   #8
AZMOM
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Yes, Claire too - left kidney. Hope things are already better!!!!!



J.
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Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
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No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
05-11-2013, 10:10 AM   #9
Tesscorm
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I'm so sorry this happened; I can't imagine how scary it was for you both! I hope he's beginning to feel better and you are able to get some rest.

Lots of hugs!
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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-11-2013, 10:15 AM   #10
Devynnsmom
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I'm so sorry he's not well I hope he's feeling better real soon. (((((hugs))))
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Devynn (12 years old) was *unoficially* diagnosed with Crohn's disease in Dec 2009.
That diagnosis was changed to Ulcerative Colitis in Mar 2012.
Pentasa ASA Dec 2009-Mar 2012 (dosage tweaked a couple of times)
Mezavant Mar 2012- Nov 2012
Sulfasalazine-Nov 2012
05-11-2013, 10:55 AM   #11
Twosons
 
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The on call GI is very young. 35 yrs old. He told me he knows of no connection between Crohn's and hydronephrosis. In his opinion they are unrelated. I'm very confused. Ev may be getting a catheter as his bladder is not draining properly.

Scopes showed overall improvement in every area accept his stomach and duodenum. His stomach has many nodules.
05-11-2013, 12:45 PM   #12
Tesscorm
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Keep in mind that scopes will not show most inflammation in the ileum (the scope can only reach a small distance into the ileum). According to what Dusty posted above, it was inflammation in the terminal ileum that contributed to the hydronephrosis. Perhaps you can find some info connecting the two to show to the GI and just ask him/her if the treatment would be the same, whether or not related to crohns .
05-11-2013, 01:02 PM   #13
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How scary! Sending (((HUGS))) Hope he's feeling better soon xx
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2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
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Peristeen Irrigation every other day.
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05-11-2013, 02:07 PM   #14
AZMOM
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Claire had urinary retention not related the the hydronephrosis.

If he shows no sign of UTI, I would ask what the possible reasons are for retention. Claire's CT at the time of the retention crisis showed diverse inflammation in her abdomen. The inability to urinate resolved after 5 days bladder rest with a foley. However try also did an MRI to rule out acute transverse myelitis (ATM) No one thought it would be positive since she could walk but sure enough, she did have a spinal cord lesion.

Don't panic but I would ask. ATM will usually resolve with steroids also but it is important to know if he's had a dymelinating event (ATM) because it is a risk factor with biological drugs, specifically the TNF blockers like Humira, Remicade, etc.

Claire's ATM event was almost two months to the day prior to crohns dx. The subsisting hydronephrosis (although it is now classified as mild) is thought to be secondary.

Big hug - hope there's no relation, his issue is simple and resolved quickly!!!

J.
05-11-2013, 04:53 PM   #15
DustyKat
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There are loads of medical/scholarly/general articles that discuss hydronephrosis as being an extra intestinal complication of Crohn's. These are but a few...

http://onlinelibrary.wiley.com/store...bmd1d&9a9a5bb3

http://www.ncbi.nlm.nih.gov/pubmed/12189739

http://www.ccfa.org/resources/kidney-disorders.html

http://journals.lww.com/amjmedsci/Ab...isease.11.aspx

...easier said than done I know but the GI has only to search Crohn's Disease and Hydronephrosis and he will soon make the connection.

As Tess has said, perhaps print some out for him. Thinking of you!

Dusty. xxx
05-11-2013, 05:04 PM   #16
DustyKat
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PS...

Even back in 1987 it was a well known complication of Crohn's...apparently...

Abstract
Obstructive uropathy with hydronephrosis is a well-known complication of Crohn's disease. The treatment for this condition is still controversial. This is the case study of a 14-year-old girl with documented right-sided obstructive uropathy secondary to Crohn's disease associated with renin-mediated hypertension secondary to her obstructive uropathy. The patient had complete resolution of her hypertension following surgery, which involved only resection of the involved bowel without ureterolysis.

http://www.ncbi.nlm.nih.gov/pubmed/3430314
For my own daughter it was her renal pain that set the ball rolling to us finally getting a diagnosis. An ultrasound showed a swollen right kidney that was diagnosed as a PUJ obstruction. Further nuclear testing proved the diagnosis to be wrong. Her condition continued to deteriorate and she required emergency surgery, at which time she had a resection and received her diagnosis. Her hydronephrosis resolved as a result of the surgery.

My son also had early signs of hydronephrosis when diagnosed but his resolved when treatment was commenced.

Dusty. xxx
05-11-2013, 05:17 PM   #17
AZMOM
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Agreed, as usual, Dusty .

My only eyebrow raise was the inability to drain the bladder
05-11-2013, 05:22 PM   #18
AZMOM
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Twosons - keep us posted. Thinking of you.

J.
05-11-2013, 07:54 PM   #19
xmdmom
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How is his kidney function (BUN?CR)? Do they have/ Can you get a nephrologist or urologist consulting?

I hope things are looking up very soon! I'm sending big hugs and healing thoughts your way!
05-12-2013, 12:34 AM   #20
Patricia56
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Nephrologist - now.

Cannot believe any age GI would say that...Where are you? Timbuktu?

Or perhaps more relevant, where did he go for his GI training and/or how many hours had he been up continuously?
05-12-2013, 03:49 PM   #21
ChampsMom
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Hey Twosons...

How's Ev doing today? Thinking about you guys...

05-12-2013, 05:10 PM   #22
Sascot
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Also thinking of you, hope things are getting better.
05-12-2013, 11:11 PM   #23
CarolinAlaska
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Sorry to hear Ev's suffering like this. I hope he gets answers and healing soon.
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05-13-2013, 02:27 AM   #24
Twosons
 
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Sorry for not updating. Sunday was just a resting day. All tests start later this morning. Ev had one very bad 4 hour period on Sunday when his pain again was so strong it caused his body to almost go into shock. Thankfully the rest of the day his pain never passed a 7 level. Praying we get answers today. Thank you all for the support and concern. It's just been Ev and I here and its been frightening at times.
05-13-2013, 03:19 AM   #25
upsetmom
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its been frightening at times.
I bet it has ...my thoughts are with you...
05-13-2013, 10:13 AM   #26
araceli
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Praying everything gets a lot better. Sending Hugs.
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05-13-2013, 10:39 AM   #27
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I hope you're taking care of yourself too, Mom. I know it's hard to leave, but even a few minutes outside to recharge your batteries can do wonders. Drink lots of water, don't forget to eat, sleep when Ev sleeps. Hugs to you both!
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05-13-2013, 11:14 AM   #28
Devynnsmom
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(((hugs)))) I hope he's feeling better real soon.
05-13-2013, 12:50 PM   #29
Farmwife
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I hope and pray he get's better.
05-13-2013, 04:35 PM   #30
ChampsMom
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Wish there was someone that you felt comfortable to come and sit with you... As a single Mom when A was in the hospital it was all I could do to have family, friends and some of the ladies from Church around... I pray - you and Ev get comfort with the test - but even moreso - just comfort (AKA - NO PAIN!!)

((((HUGS))))
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