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02-21-2013, 08:29 PM   #301
my little penguin
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Hugs a lot to take in.
Just breathe and realize sometimes things are just bad.
But we are here and things will go on .
Today get a trashy novel and have a good cry with the cabana boy serving you drinks.
Tomorrow you can put back on your big girl pants .
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DS - -Crohn's -Stelara
02-21-2013, 08:42 PM   #302
Kimberly27
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Even more hugs!

Kimberly
02-21-2013, 08:48 PM   #303
CarolinAlaska
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I know it must be a shock. I'm sending my love and care too.
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
02-21-2013, 09:34 PM   #304
kimmidwife
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Sending more hugs and more hugs! We are all here thinking and praying for both you and Lucy. Just take it day by day right now. It is hard when so much comes at you at once but at least you have answers to start to look for solutions. Keeping you in my thoughts and prayers!
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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.
02-22-2013, 11:09 AM   #305
Jmrogers4
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Adding my ((Hugs)). It is a lot to take in but taking it day by day or even hour by hour if need be, come on here and visit for a laugh, a cry, a vent, whatever you need we'll be here virtually holding your hand. Take care
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-22-2013, 11:13 AM   #306
Sascot
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Sorry to hear about that! Sending lots of hugs too!
02-22-2013, 11:37 AM   #307
Suzysu
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So sorry that you and your family are going through so much xxxx
02-22-2013, 04:53 PM   #308
CarolinAlaska
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Today I saw the eye speaicalist
And have been diagnoised with
Keracotonus disease of the right
Eye, this can not be cured the
Only is they can prolong it from progressing
It's where the cornier goes goes a cone she
And thiner as it progresses which scares me
As I could loose my sight in that eye or
Have to have a cornier transplant .
It feels like I'm a walking time bomb
Ready to go off, I can't help wondering
What other illness my body has been hiding
Because in 3 weeks a I found I have 2
Diseases which has majour effects.
Everything feels like its breaking apart
And I just feel like crying ��
I was just reading an article yesteday that was about how people can get cardiomyopathy caused by stress. I thought of you. I hope you can find a therapy that helps you deal with the stress so you can be healthy to help your daughter and so you can get better. I know how it is when you are in the thick of it - it plays a big toll on us all!
02-25-2013, 03:13 PM   #309
Mylittlesunshine
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Thanks everyone for your lovely thoughts
And wishes.
I'm hoping to come home at end of this 4 th
Week.
I'm so scared and worried that it will happen
Again. Been feeling really low and can't stop
Crying .
Sorry
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Currently on EN
Neacate LCP
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Iron
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Pred tapering
02-25-2013, 03:24 PM   #310
Kimberly27
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Giant hug.

Kimberly
02-25-2013, 04:11 PM   #311
CarolinAlaska
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Thanks everyone for your lovely thoughts
And wishes.
I'm hoping to come home at end of this 4 th
Week.
I'm so scared and worried that it will happen
Again. Been feeling really low and can't stop
Crying .
Sorry
Sweetheart, are you taking anything for anxiety and depression? You may consider asking your doctor about it if you can't come to a place of peace in your heart while you are under all this stress. <<<HUG>>>
02-25-2013, 04:29 PM   #312
Mylittlesunshine
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I've been told its normal to be upset and scared ect
And they won't give me anything
As all the long list of medication
That I'm on is not good with depression tablets
Also my blood pressure is far to high
198/145 average .
The thing that scares me is not knowing
If I will collapse again and if the kids are
Left alone with me if it happens.
I guess it's going to take sometime to get
Use to it
02-25-2013, 05:30 PM   #313
Kimberly27
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Since you can't take anxiety or depression medications, what about non-medication options like mediation or hypnosis CD's, counseling, or massage? Is there a support group at the hospital for people with similar conditions? Perhaps there is one on-line?

How's Lucy?

Hugs.

Kimberly
02-25-2013, 06:01 PM   #314
CarolinAlaska
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Seriously, they are going to send you home with a diastolic BP of 145? Have they checked you for pheochromocytoma?
02-26-2013, 03:19 PM   #315
Mylittlesunshine
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Hi carolin yes I asked about that and
Was told that the two 24 he urine
Collection test where to test for that
But take few weeks to come back
As it is a speaicalise test.
Thanks for mentioning it x
02-27-2013, 02:41 AM   #316
CarolinAlaska
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How're you doing? Is your diastolic BP still so high? Are you home now?
03-02-2013, 04:18 PM   #317
Mylittlesunshine
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Hi everyone
I just want to say a huge thank you
To all my dear friends for there support
And we'll wishes, if I didn't have you guys
I don't think I would of made it though
This last month.
Anyway I finally got home and have to
Take a long list of meds and have regular
Check up with gp and hospitals
Heart failure clinic .
Not all my test have come back but I
Do know for sure I have dilated cardiomyopathy
Which made me collapse that day ad my heart
Skipped beats.
Will keep u all updated x x.
03-02-2013, 04:34 PM   #318
xmdmom
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I hope you are feeling a little better and will continue to improve. Some causes of dilated cardiomyopathy are reversible. Hoping that's the case for you.
03-02-2013, 08:59 PM   #319
Jmrogers4
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Welcome home! Glad you are back home
03-02-2013, 09:55 PM   #320
CarolinAlaska
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I am glad you are home. I hope it is a good thing and you have lots of support around you and your family, and I hope you are completely healthy soon!
03-03-2013, 03:54 AM   #321
Sascot
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Glad you made it home. Hope the meds keep it under control. Just wondering - when my mom was being released from hospital quite ill, they recommended her getting a medic alarm button installed. Basically you have an emergency buzzer that you can wear round your neck and one for the house which you can press if you collapse and a trained first aider will be there asap and they can get in touch with an ambulance if needed. Don't know if you have that where you live, but might be worth looking into. Then both you and the kids have something to press if needed.
03-03-2013, 03:09 PM   #322
Mylittlesunshine
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Sascot thanks for that information
Where would I find details of that?
Is there any certain company's that
Do it? Any idea of the price?
Any info would be great
03-03-2013, 03:26 PM   #323
Sascot
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Not really sure as I think it varies between areas. Our emergency response is called MECS. My mom was quoted 3 a week, but she is a pensioner, so it would probably be more than that. Maybe if you asked your local hospital and/or local council? At the hospital I think it was the occupational therapist who arranged for it.
03-07-2013, 02:25 PM   #324
Mylittlesunshine
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Hi everyone
Thought I'd update you all on Lucy
Her EN is going ok she hasn't lost
Any weight but hasn't gained either.
She has appointment next week
For bloods and talk about meds I think
He wants to start her on pred?
Any experience and advise would be great.
If I decide not to go ahead with pred
What other maintenance meds are usually
Used?
03-07-2013, 02:36 PM   #325
Mylittlesunshine
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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
03-07-2013, 05:33 PM   #326
Clash
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Most of the maintenance meds take some time before they are effective, that is why EN or Pred is used to induce remission, the maintenance meds are started while still on EN or tapering pred so when you end EN or taper off the pred the maintenance med has had time to reach full efficacy.

So sorry to hear you are still having trouble. I hope they are able to get things under control for you and your daughter quickly!! HUGS!!
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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
03-07-2013, 05:41 PM   #327
Farmwife
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Oh, so sorry to hear that. Do you have help at home?
Hugs to you both.
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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
03-07-2013, 06:00 PM   #328
Sascot
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Sorry to hear you aren't feeling well still. Not sure about maintenance meds, seems to vary. Our GI starts with Aza, then 6mp, then Methotrexate, depending how the kids respond. Hope they manage to get you onto a med that makes you feel better!
03-07-2013, 07:07 PM   #329
kimmidwife
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Sending hugs. I hope you are feeling better and the medication is starting to work.
03-07-2013, 08:56 PM   #330
CarolinAlaska
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Hi everyone
Thought I'd update you all on Lucy
Her EN is going ok she hasn't lost
Any weight but hasn't gained either.
She has appointment next week
For bloods and talk about meds I think
He wants to start her on pred?
Any experience and advise would be great.
If I decide not to go ahead with pred
What other maintenance meds are usually
Used?
How much does Lucy weigh and how much EN do they give her every day? Is the able to eat with it? Is she still having symptoms other than not gaining weight?

Like Lucy, I think Jae may end up on pred next week since she is still having some belly aches and hasn't achieved remission by now (week 5). I think we'll be discussing starting 6MP as well for remission.
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