03-07-2013, 08:58 PM   #331
CarolinAlaska
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Ok my update
This hasn't been a good two weeks ended up
Back hospital twice.
Last weekend was the worst I collapsed
Again with my heart very fast beating
Pain in chest was rushed to hospital resus
It's really scary wish everything will
Go back to normal x x
I'm sorry to hear that you are still suffering with your own health. Are you back home now? I will pray that they can find a way to stabilize you better.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), intermittent 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.
03-10-2013, 09:17 AM   #332
Mylittlesunshine
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Hi everyone
just a bit of news i wanted to share with you all
Lucy went for poop on potty for the first time
i was so proud of her, as you all know she is still in nappies,
hope it carrys on
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Currently on EN
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Iron
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Pred tapering
03-10-2013, 11:16 AM   #333
Kimberly27
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Yeah!! Whoo-hoo!

Kimberly
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"You never know how strong you are until being strong is the only choice you have."

Mom of 17 year old son with Crohn's
2000 mg Pentasa
125 mg. Azathiorpine
Calcium/Vit D
Multi-Vit

Past Meds:
Metronidazole (Flagyl), Ciprofloxacin, Levofloxacin, Xifaxin, Zosyn, Augmentin-ES, VSL#3
03-10-2013, 01:04 PM   #334
CarolinAlaska
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Congratulations to both of you! I hope it becomes a habit soon!
03-10-2013, 02:02 PM   #335
Mylittlesunshine
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Hope so to carolin.
I'm a bit nervious as I've got my
First heart failure clinic tomorrow
And not sure what to expect.
03-10-2013, 02:13 PM   #336
CarolinAlaska
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I'll say a prayer right now that it will go well and provide a good solution to your cardiac needs and bring you peace and health.
03-10-2013, 02:17 PM   #337
Mylittlesunshine
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Thanks carolin it's been really hard to
Get used to and not being able to
Do things you are used to doing .
The worst is being tired all the time and
Out of breath.
It made me cry today when the kids gave
Me Mother's Day card found it really emotional.
All prayers welcome Hun thank you
03-10-2013, 03:32 PM   #338
Sascot
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Hope the clinic goes well. That was great she managed to go on the potty - what a star!
03-10-2013, 09:01 PM   #339
Farmwife
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Hugs
Let us know how all goes.
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I'm mom to............... Little Farm Girl 9 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 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
03-12-2013, 05:04 AM   #340
upsetmom
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Hi MLS
How are you feeling? Did you go to the clinic?
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Daughter dx CD March2012...
(aged 14)

Currently on:
Stellara
125mg Imuran




Dx Premature Ovarian Failure 2014



03-12-2013, 06:56 AM   #341
polly13
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Well done Lucy - good for you. Hope your clinic appointment went well mls
03-12-2013, 07:17 AM   #342
Mylittlesunshine
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Hi everyone
I went the heart failure clinc
Things didn't go as well.
I've had to have heart monitor fitted for
24 he then got to take that back to have
A blood pressure monitor fitted for 24hr
The heart failure nurse fiited me in for emergency
Appointment to see heart doctor Friday
As she thinks I might have anarythmia which
Is making my heart beat fast, I'm still shocked
As this is with the cardiomyopathy aswell.
Sorry for not updating earlier x
03-12-2013, 07:20 AM   #343
Mylittlesunshine
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Sascot thanks for the information on
The alarm I found a local company
Who don't charge for the alarm all
You pay is 2.99 per week for the service.
I'm hoping to have the alarm fitted next
Monday .
03-12-2013, 04:46 PM   #344
Sascot
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Glad you managed to find an alarm company. Helps with a bit of peace of mind. Sorry your appointment didn't go well. Hopefully the heart specialist will be able to come up with a good treatment plan!
03-12-2013, 09:38 PM   #345
kimmidwife
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Glad you found that alarm company! Hopefully they figure out things fast and get you onto a good treatment plan. I am sending prayers your way!
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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.
03-13-2013, 03:14 AM   #346
Mylittlesunshine
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Thanks everyone don't know what I
Would if done without you guys x
Lucy goes to see the GI on Thursday
To discuss treatment plans and meds and
Results x
03-13-2013, 01:25 PM   #347
Mylittlesunshine
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A quick question Lucy went poop today
And in the poop was yellow/orange/ pinky red
Mucous. Has anyone else's kid had this?
Is this normal. She's had mucous before but not
This colour. Any ideas or advice greatful x
03-13-2013, 01:29 PM   #348
Farmwife
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Mucus can mean inflammation in the track. Grace has it also. Call the GI. Now you know what she has they will be able to answer right away. Let us know how it goes.
03-13-2013, 02:06 PM   #349
Mylittlesunshine
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That's what I thought fw, we have appointment
With GI tomorrow. Will see what he says
03-13-2013, 02:09 PM   #350
Farmwife
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If you think of it, take a pic.

You should ask if they want samples if things like that happen out of the ordinary or would a picture do?
03-13-2013, 02:37 PM   #351
Mylittlesunshine
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I've already took pic on my iPhone
Always do when I need to show doc something.
Find it best way x
Thanks FW how's grace doing ?
03-13-2013, 03:06 PM   #352
Sascot
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Wouldn't people be shocked if they ever got hold of your phone and saw the pictures!
03-13-2013, 03:17 PM   #353
Jmrogers4
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They might think we are some kind of weird perverts
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-13-2013, 05:06 PM   #354
Mylittlesunshine
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Lol you guys make me laugh,
Good job I keep the in a locked file lol
03-15-2013, 12:33 AM   #355
CarolinAlaska
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How did your GI appt for Lucy go, MLS? What did he/she say about the poop?
03-15-2013, 12:26 PM   #356
Jmrogers4
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^^^ Second that.
03-15-2013, 04:07 PM   #357
Mylittlesunshine
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Hi everyone
Sorry for not updating sooner
Ok will start with Lucy.
Went to GI appointment on Thursday
Showed him pic of mucus and he said
It's most likely inflammation so he took
Bloods. He want to keep her on EN
And start he on pred which I'm a bit
Concerned about and the dose seems abit high
For a 3 year old or maybe just me.
He also mentioned instead of using NG
Tube she would be better with a mickey
Button, has anyone else's kid got a peg? Or
Mickey button? Would like to know more
Info snd experiences.
So all in all things are happening.
03-15-2013, 04:13 PM   #358
Mylittlesunshine
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Ok my update
After having 24hr heart monitor on
I went to heart clinic today
And it showed my heart going fast even when
Sleeping, so he sent me for a ECG of heart
Which showed my heart racing at 130
and LVH abnormality and tachycardia
. So the have started me on more new meds
And in 2to 3 weeks time I've got to have
A heart monitor implant put into my chest
Which I'm really scared about as I will be
Awake 😱x so the story continues
Wish I could fast forward 2013x
03-15-2013, 04:19 PM   #359
Jmrogers4
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I believe vtfamily has a peg, there is someone else but darned if I can remember. If I do I'll come back and page them.
03-15-2013, 04:23 PM   #360
Mylittlesunshine
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Thanks jacqui that would be great
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