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Crohn's Disease Forum » Parents of Kids with IBD » Much Ado About Nothing! eh!


 
01-21-2016, 05:08 PM   #2581
CarolinAlaska
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I've been sitting in preop for my nonIBD son to have a minor surgery for 7 hours. He was supposed to be brought in 5 hours ago. I literally called them 2.5 hours ago because we hadn't seen anyone for hours and I thought they'd forgotten us. They just came in now and said we're next. Apparently we were bumped for a couple emergencies.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
01-21-2016, 05:25 PM   #2582
pdx
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Wow--that's a long time to wait--how frustrating. Hope he gets called back soon. Was he able to eat while waiting, at least, or was he NPO?
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, 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
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-21-2016, 05:30 PM   #2583
fuzzy butterfly
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Oh no hun. Nightmare that hanging around one. Drives you batty doesnt it . I have had the emergency one crop up before now too. Sending hugs to you both n hope your seen very soon. Best wishes n hope all goes smoothly for the minor op . 💖
01-21-2016, 05:39 PM   #2584
CarolinAlaska
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Wow--that's a long time to wait--how frustrating. Hope he gets called back soon. Was he able to eat while waiting, at least, or was he NPO?
NPO since 7 am central time. Yea for iPad. They just took him back.
01-21-2016, 05:41 PM   #2585
fuzzy butterfly
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ipad's are a god send arent they. 💕
01-21-2016, 05:45 PM   #2586
CarolinAlaska
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He didn't peep for hours once he got that thing. I never let him do that at home!
01-21-2016, 05:57 PM   #2587
fuzzy butterfly
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Aw bless him. I know home is different isnt it. But stuck in a waiting room , its a life saver from the boredom. Hugs 💕
01-21-2016, 06:03 PM   #2588
fuzzy butterfly
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Talking about this has reminded of when my son was little. Games consoles were just comming into play in a big way. Where was my son.. out in the piddling down rain playing out. Could barely get that boy in the house, except when he was poorly. So he rarely went on his console even if i would have allowed him to spend hours on it. Which i wouldnt have done, so good job really lol ☺
01-21-2016, 06:15 PM   #2589
CarolinAlaska
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Yeah, he'd rather be doing electronics unfortunately.
01-21-2016, 07:57 PM   #2590
crohnsinct
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My kids tell me Facebook says it is National Hug Day! Here are some extras for all of you just because!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-21-2016, 08:03 PM   #2591
Susan2
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
01-31-2016, 10:04 PM   #2592
Catherine
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Miss almost 17. Comment after being admit to hospital on Saturday night.

I'm in lose lose situation.


Situation 1.
Lose: I'm fine. Lose because I will have stay here trying to sleep in a neck brace with no pillow.

Situation 2.
Lose: Because I have really damaged myself and need to be here.

Situation 1
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)

Last edited by Catherine; 02-01-2016 at 08:53 PM.
02-01-2016, 09:31 AM   #2593
Tesscorm
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Trying to keep them positive up can be a full time job sometimes! Thankfully, it turned out okay!!
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Tess, mom to S, 22
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
02-12-2016, 09:49 PM   #2594
crohnsinct
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Where are all the girl scouts?! Isn't it cookie season? My girls are all older so none of their friends are girl scouts. I just had to buy the supermarket, rip off, thin mint cookie

Not the same!
02-13-2016, 11:03 AM   #2595
pdx
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We have a dangerous number of girl scouts in our neighborhood! We've ordered, but the cookies aren't here yet. I've got to start being a little more careful, though. A year of making high calorie food for E has left my jeans a little tight...
02-13-2016, 12:24 PM   #2596
Farmwife
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No girl scouts yet for us.

Yea I agree pdx, why is it we get this food to plump them up but it's our waist line that pays the price.
Maybe I should buy as twice as much in hopes she'll eat more.
Yea the sounds reasonable.
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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)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
02-13-2016, 09:45 PM   #2597
kimmidwife
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FW,
That sounds like a plan!
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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.
02-19-2016, 09:22 AM   #2598
Tesscorm
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Not related to crohns but just need a bit of info from you all...

My father was admitted to hospital a couple of weeks ago. Intitally they thought he had termporal arteritis (vasculitis of arteries in head) and started him on prednisone (50 mg). Subsequent tests have shown he did not have this so they are going to start tapering him off pred. He's been on pred for 14 days. The tapering schedule is moving to 40 today, 30 tomorrow and then reducing by 5 each day.

Because S has never been treated with steroids, my knowledge is limited to what I've read here. This seems to be a pretty quick taper - but, of course, I'm comparing it to the situations here and I'm dealing with an adult who, it turns out, does not have a condition that needs to be treated by the pred.

I'll spare you the details but hospital care can sometimes be lacking (as we all know), so I just want to make sure this is handled correctly. If the taper is too quick, what happens? What should I watch for?

Thanks guys!
02-19-2016, 10:46 AM   #2599
kimmidwife
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Tess,
Since he has not been on it long term I think that should be okay. I would also have him take a vitamin B complex which helps when you wean off prednisone.
02-25-2016, 05:18 PM   #2600
Sascot
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Feeling yucky today. Just found out my calprotectin is raised - oh boy!
02-25-2016, 05:28 PM   #2601
pdx
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Oh no--are you being tested for IBD too, or was the test for something else?
02-25-2016, 05:54 PM   #2602
Clash
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Sascot, I hope everything is ok. I must have missed the thread where you were having tests. Hope you get to feeling better soon.
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Clash
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
02-25-2016, 10:55 PM   #2603
kimmidwife
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Sascot,
Oh no!!!! That is terrible. Feel better and keep,us posted what is going on!
02-26-2016, 09:29 AM   #2604
Tesscorm
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Wish you were feeling better. I hope the elevated FC leads to some answers and, hopefully, to something that can be quickly treated.
02-26-2016, 12:31 PM   #2605
crohnsinct
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Sascot: What are your symptoms? FC in older adults (and I say that with love) can be from a number of causes that we usually don't even consider with the kids...I hope it is one of those easy fixes. Keep us posted!
02-26-2016, 12:37 PM   #2606
Sascot
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Thanks. I had to take 4 strong antibiotics last year May/June and it really messed up my stomach. It came and went for a while but the pain and nausea is getting worse. I assumed IBS, but the GP sent the calprotectin away just in case. Who knew it would show anything. Not a high reading but enough for them to tell me to come in
Crohnsinct - it's bad nausea on and off, tummy just feels 'off' and sometimes like a blowtorch is burning my intestines plus random bad pains that last a while then disappear completely. Believe me I am feeling much older these days
02-26-2016, 12:49 PM   #2607
pdx
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Hope it turns out to be something that's easy to treat, and that you're feeling better soon.
02-26-2016, 12:56 PM   #2608
Maya142
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Sascot - I remember you saying at some point you were going to be tested for AS? Did that ever happen? People with AS can have higher FCs and often have gut inflammation. Just something to look into if you still have joint pain.
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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
02-26-2016, 01:26 PM   #2609
Sascot
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They never came to any conclusion about the joints, the rheumatologist just sent me off. Joints have actually been fine since giving up gluten
02-26-2016, 03:05 PM   #2610
kimmidwife
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Sascot,
Did they test for Cdiff? Especially after being on antibiotics.
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