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Crohn's Disease Forum » Parents of Kids with IBD » Get Well Wishes for Niks Daughter J


 
03-07-2013, 06:35 PM   #1
Farmwife
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Get Well Wishes for Niks Daughter J

As many of you know that J has been in and out of the hospital.
Her wonderful mother has been keeping us up-to-date on her on-going struggles.


I thought it would be lovely for Niks daughter J to get some well deserved
Get well wishes from all of us on this thread.

Any one, from any subforum can leave messages.

If you like updates on J, please check on Niks thread.
http://www.crohnsforum.com/showthread.php?t=48067
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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, 06:43 PM   #2
Farmwife
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Dear J,
Grace and I want to send you get well wishes and big hugs all the way from the USA.
I hope you start feeling better and better every day. You've been so brave through all this and I hope your back to your healthy self soon.


From,
Farmwife and FarmGirl/Tinker Bell/ Water Fairy/ Grace (Yes she does like going by all those names)
03-07-2013, 06:44 PM   #3
Catherine
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Wishing J a speedy recovery.

Glad to see the new hospital is taking notice.

Thinking of you all.



Our wishes are comming from Melbourne, Australia.
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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; 03-07-2013 at 08:28 PM. Reason: Add location.
03-07-2013, 06:52 PM   #4
Niks
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Thank you so much! I will show her these posts tomorrow..

You are all so kind. Jaime wouldn't even be where she is without your advice and support

You are all amazing Mums and Dads xxx
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
03-07-2013, 06:55 PM   #5
Clash
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I'm so glad she is getting the care she so deserved!!! I know you are too, Mom. I hope she improves quickly and is feeling much 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
03-07-2013, 07:02 PM   #6
Devynnsmom
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Great idea farmwife!
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Samantha, AKA Devynn's mom


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
03-07-2013, 07:04 PM   #7
Devynnsmom
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Jaime, Devynn and I (in sig above) are sending our love. We hope you start feeling better real soon! Sending love to your mom as well, as I know how much she loves you and how worried she has been! (((((hugs))))
Love Devynn and Samantha xoxo
Edited to add- Our love is coming from Ontario, Canada

Last edited by Devynnsmom; 03-07-2013 at 08:02 PM.
03-07-2013, 07:05 PM   #8
kimmidwife
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Dear Jaime,
Sending you hugs and wishes for a fast recovery! We are all thinking of you.
__________________

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.
03-07-2013, 07:34 PM   #9
dannysmom
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Hi Jaime -
There is a New York family thinking of you too. My 16 yr old son has been sick and undiagnosed for over 4 years now ... so we have some understanding of the horror you have been through. We are happy this hospital is making you feel better and are putting together a thorough plan for evaluation.
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
03-07-2013, 07:41 PM   #10
my little penguin
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Get well soon
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DS - -Crohn's -Stelara
03-07-2013, 07:44 PM   #11
Jmrogers4
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Jamie,
You have lots of families across the globe checking in each day to see how you are doing. This family from Boise, Idaho in America is wishing you a speedy recovery and hope you start feeling fantastic quickly. We are thinking of you.
Jacqui, Jack & Jamey
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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
03-07-2013, 08:17 PM   #12
upsetmom
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.. Jamie thinking of you ...i hope you get well soon.
03-07-2013, 08:30 PM   #13
poppets mum
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Every time I have read of J,s struggles I have always hoped that things would turn around, and somehow she would be feeling better you are doing an amazing job trying to get treatment for her and she is being so brave. Hoping someday soon I will read a post that says she is doing a lot better. Hang in there, lots of hugs to ya both,
03-07-2013, 09:20 PM   #14
CarolinAlaska
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Hi Jaime,

Get well soon from cold and snowy Alaska!

Jaedyn and I wish you a quick recovery. Know that we'll be reading about your progress and I will be praying for you, as I have been. I'm so glad that you are getting the medical attention that you need now and I hope that they can find the problem quickly!



Carol and Jaedyn in Soldotna, Alaska
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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.
03-08-2013, 12:52 AM   #15
Kimberly27
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Sending love from the wine country in Northern California. Get better soon!

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
03-08-2013, 01:11 AM   #16
afidz
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Niks I really hope that she starts to feel better soon
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
03-08-2013, 02:16 AM   #17
Jennifer
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Keep it up J! I heard you held down some food today. That's awesome! Your parents have done a wonderful job helping you get the care you desperately needed and no words can describe how bad we all feel about you going so long without proper care. You're going to get better and we're all here for you anytime you need us. *HUGS*
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
03-08-2013, 02:55 AM   #18
Stephyjane
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Hi J. I've been also following your story and send you lots of love and wishes and have everything crossed that you will find out what's going on so you can start getting better.
Niks you must be feeling a sense of relief at actually having drs do something for your daughter. You are such a great mum and I know how heartbreaking this must be.
Get better real soon J.
My daughter is also seen at Oxford so we are not many miles away from you.
Take care xxxxxx
03-08-2013, 03:08 AM   #19
Niks
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Thank you so much everyone! You are all very kind. Will show J later
03-08-2013, 03:49 AM   #20
Bubbly
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Get well soon and hope J is feeling much better very very very soon x
03-08-2013, 04:12 AM   #21
Sascot
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Glad they are finally doing something to help. Saves me having to travel from Scotland with my rolling pin ready!
Hope you feel better Jaime!
03-08-2013, 05:58 AM   #22
Mylittlesunshine
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Get well soon jaime x I hope they sort you
Out soon and you will be feeling better soon x
Love n hugs from me and Lucy x x
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Currently on EN
Neacate LCP
Multivitamin
Folicacid
Iron
Dalavit
Calcium sandos
Dyclavlovin
Inhalers x3
Pred tapering
03-08-2013, 07:47 AM   #23
Lewis,s mum
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Get well soon Jamie u.ll soon be up and about causing mischeif and drivin your mum crazy . Keep strong bunny your a beautiful young lady , when I showd Lewis your picture he said she's pretty mummy is she your friend is she coming round to see me lol he keeps asking how's Jamie , bless , get well soon bunny . Big hugs from rainy Manchester .xxxxxx
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lewis dx age 5

had first peri anal abcess age 2.
fought for his dx for 3 years
disease is located in . his peri anal, rectum colan and small bowel
meds todate are
infliximab 6 weekly
Azathioprine 50 mg daily
omeprazole 40 mg daily
buscopan 30 mg Daily
movicol 5 sachets at present a day
03-08-2013, 09:16 AM   #24
Tesscorm
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Jamie, so glad you're finally getting the care you deserve! From what your wonderful mom's said, it seems these doctors are finally on the ball and putting you on the path to recovery! I hope you begin to feel the improvement very, very soon!

All the best from some Canadian friends! (Toronto, Ontario)

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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
03-08-2013, 10:05 AM   #25
Maree.
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Think of you both. Jamie, Hope your back on your feet and feeling good again very soon. Sorry it's taken so long but glad to hear it sounds like your now in the right place and getting the care you need.
03-08-2013, 05:44 PM   #26
Niks
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Jaime was so upset today at the thought of having to stay in hospital for longer than she thought.. I showed her all your lovely messages, she was stunned!

'Why would all these people put such lovely things for me when they don't even know me'?

She was amazed that so many people from all over the World have been thinking about her..

Thank you all so much! You made me cry
03-08-2013, 07:39 PM   #27
Crohn's Mom
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Jamie, hang in there sweetheart !
You have an amazing family that is supporting you all the way ~ and an abundance of "invisible friends" that are rooting for your health and happiness!
Just remember, whenever you start to feel as if "no one believes you", we are all here, and WE BELIEVE YOU, AND IN YOU !
You can and will get through this tough time, and hopefully will get some solid answers to where it doesn't get this bad again.
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-08-2013, 07:42 PM   #28
izzi'smom
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Get well soon jaime!!! Sorry you've been through so much but thrilled that u have some docs that are paying attention finally!
Love, another NY family...angie, izzi, and xavier!
Farmwife, your thoughtfulness warms my heart
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.

Last edited by izzi'smom; 03-08-2013 at 09:12 PM.
03-08-2013, 07:52 PM   #29
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Mac and I send you a big big hug Jaime and get well wishes.
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Medication regimen:
Vitamin d3, 5000 iu, entocort 15mg,codeine 60mg, cipro 1000mg per day, iron infusions, b12 injections, humira.
03-09-2013, 01:52 AM   #30
Jennifer
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Jaime was so upset today at the thought of having to stay in hospital for longer than she thought.. I showed her all your lovely messages, she was stunned!

'Why would all these people put such lovely things for me when they don't even know me'?

She was amazed that so many people from all over the World have been thinking about her..

Thank you all so much! You made me cry
It's what we do! Sorry you have to be in the hospital longer. I know its not fun. I got to stay in one for 3 months before my diagnosis. There were no cell phones or computers. I watched the helicopters land and take off and knew the train schedule. I had a nice view. :P Mostly I watched TV though. All old reruns of I love Lucy and Gilligan's Island (both before my time). I called the nurses in a lot and chatted with them and made little food sculptures out of playdough then smashed them (except for the tiny Thanksgiving dinner I made, I invited the night time nurse in for dinner, I was 9, not creepy :P). Hopefully you wont be in there anywhere near as long though. *HUGS*
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