11-23-2016, 08:36 AM   #1
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Join Date: Sep 2014
Surgery today :(

They admitted DD because her kidney stone is 4mm and that's the cutoff for a stone you can pass on your own. Urologist gave two options:1) go home, wait it out and 50% chance she'll pass it on her own but may keep having terrible pain as it passes or 2) surgery today to go in through her ureter (no cutting) and pull it out and possibly place a stent and then 3 days of antibiotics.

Of course my knee jerk reaction is go home and wait it out, but she's the one who has to go through the pain and she may have to have surgery anyway. She passed a 1-2mm stone a few months ago but this one is twice the size. She wants the surgery because she doesn't want to chance spending another holiday in a hospital (last year she was in the hospital for Thanksgiving, Christmas and New Year's). She's 15 yo so technically still not her decision. I just wanted to come here and get opinions from parents that have been through it all like i have. I may not be thinking clearly! Any time general anesthesia is used I get scared and I don't like the idea of antibiotics either. But the idea of her going through more pain (and she has a HIGH tolerance and was writhing on the bed) and not being able to pass it anyway scares me too. It broke my heart when she said she just wants the surgery because "it's just my luck I know I won't able to pass it on my own".
11-23-2016, 09:01 AM   #2
Lisa's Avatar
Join Date: Apr 2010
Location: New York

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Having had kidney stones, and knowing the pain they can cause, I'd go for the surgery to get it out. If you go home and wait it out, as you said, there is a chance she won't pass it, and will end up being in more pain. Also, if it does try to pass, it could get stuck and cause issues.

Not to be alarmist, but my Mom had a kidney stone a few years ago that caused a total blockage, and after being mis-diagnosed by the ER team (they didn't bother to do a CT scan!), she was rushed back tot he ER by ambulance where they finally found the stone - and her 'popped' kidney from the pressure build up! Thankfully a kidney can self-heal, and once she had the stone taken care of she was good to go.....the procedure itself to get the stone out wasn't a big deal.

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
11-23-2016, 09:04 AM   #3
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Clash's Avatar
C hasn't had to deal with kidney stones but I'd wager he'd choose surgery as well.

His pain tolerance is high too but if there was a chance he'd had to have the surgery anyway and over his holiday break he'd opt for now. He's already grumbling that his wisdom teeth are being removed over his holiday break. They are so impacted, the dentist is amazed that they haven't had him in excruciating pain. We had to wait til break because of med alignment(surgery needs to be done two weeks out from next dose).

Sending hugs your way. I hope all goes well with the decision you make and she is back on her feet and enjoying the holidays!
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
11-23-2016, 10:24 AM   #4
Senior Member
No experience with kidney stones, but I'm all for letting our kids make their own medical decisions. A is 11 and we try to involve her in the decision making process as much as possible. Only your daughter knows how she feels....we can only guess. I hope the surgery goes well and she's back to normal ASAP!
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
11-23-2016, 10:40 AM   #5
my little penguin
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Join Date: Apr 2012

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I had a1 cm stone and had the procedure
The procedure itself was minor
Nice nap no issues very quick no pain
The stent they use was annoying and made you constantly feel like you had to "go " every 10 seconds from spasms
Take the anti spasmodic if they give her one -I didn't take it

Never want to be rid of something so bad in my life
Good luck !!!
DS - -Crohn's -Stelara -mtx
11-23-2016, 11:06 AM   #6
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Join Date: Dec 2014
Location: Portland, Oregon

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No experience with kidney stones here either, but just wanted to say that I hope it goes well, no matter what you choose.
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (20 mg weekly)
vitamin D, folic acid, iron, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15, 3/24/18-5/18/18
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Clobetasol for Remicade-induced psoriasis
11-23-2016, 03:04 PM   #7
Join Date: May 2016
Location: Calgary, Alberta
I had the surgery done a few years ago and was given the same two options as your daughter. Asked the dr what he would do and he recommended the surgery as I'd be in excruciating pain until it passed and that wasn't even a guarantee. I went in for surgery late morning and was walking out of the hospital that early evening. I honestly don't even remember feeling any pain or after affects from the surgery. The idea of going under was scary but it was so quick!
11-23-2016, 03:09 PM   #8
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Maya142's Avatar
My husband has had kidney stones several times - he had the surgery once. It was very quick and easy.

I'm sorry to hear that she has to deal with something else - poor kiddo .

Good luck!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
11-24-2016, 01:11 PM   #9
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kimmidwife's Avatar
Hope it went well! I have had multiple kidney stones and they are not fun!

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-24-2016, 10:30 PM   #10
Senior Member
Join Date: Sep 2014
Surgery went well, aside from the fact that they gave her Toradol and I told them MANY times NO NSAIDS! They did end up placing a stent but hopefully she'll get that out tomorrow. Had a scary few minutes last night after surgery(LOTS of blood when she first urinated) and this morning before discharge (she passed out on the toilet). But she's home now and all she has needed so far is an extra strength Tylenol. Thanks for all the support and info
11-24-2016, 10:32 PM   #11
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Maya142's Avatar
Glad she is ok!!
Just FYI, my daughter has had Toradol many times after various procedures. They checked with her GI who said it was ok, occasionally. If it was just the one time, hopefully she will be just fine. My daughter has never had any side effects at all with it, thankfully.

Hope she continues to feel better!
11-25-2016, 12:29 AM   #12
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Join Date: Dec 2014
Location: Portland, Oregon

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So glad to hear that she's already home, and that the pain isn't too bad. Hope that you were all able to enjoy Thanksgiving!
11-25-2016, 12:30 AM   #13
my little penguin
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Join Date: Apr 2012

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Glad it went well and she is at home
Hope she gets the stent out soon
11-25-2016, 02:56 AM   #14
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Join Date: Apr 2015
Location: Kankakee, Illinois

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I just had a stone surgically removed about a month ago. This one blocked me from urinating, but I was able to go just enough to last until the procedure. I've been meaning to ask if stones are a Crohn's byproduct, or a side effect of one of the medicines. Docs tell me our stones ARE UNIQUE.
Diagnosed 1982
Ileostomy and reconnect
Meds over the years: Sulfasalazine, Pentasa, Prednisone, Entocort, Azathioprine (allergic reaction)
Present: Humira

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