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03-23-2013, 12:52 PM   #1
Breuerc
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Please assist in my thesis research

Hello everyone! I am a graduate student at the University of Wisconsin-Stout conducting my thesis research on stress in parents of children with IBD. I need your help! If you are a parent or guardian of a child (under 18) who has IBD, please copy and paste my survey link below. The survey will take around 20-25 minutes to complete and there will be a chance to win one of five $20 gift cards! I'd really appreciate your assistance! If you know any other parents/guardians who have children with IBD (including your spouse or partner), please inform them of my study as well. If you have any questions, feel free to shoot me an email at [email protected]. Thanks much!!
https://uwstout.qualtrics.com/SE/?SI...Bt3ZXkJ6TuNu04
03-23-2013, 01:32 PM   #2
Clash
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done.
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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
03-23-2013, 01:47 PM   #3
Devynnsmom
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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
03-23-2013, 02:19 PM   #4
DustyKat
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I have two children with Crohn's but they are now both over 18. Any particular reason for the age limit if they developed the disease when they were younger than 18?

Dusty.
03-23-2013, 03:10 PM   #5
Twiggy930
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Will do it later today.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
03-23-2013, 03:34 PM   #6
Marni's mom
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03-23-2013, 03:45 PM   #7
upsetmom
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Daughter dx CD March2012...
(aged 14)

Currently on:
Remicade
125mg Imuran
3000mg Pentasa
600mg Calcium


Dx Premature Ovarian Failure 2014
On Estrogen and Provera


03-23-2013, 07:21 PM   #8
Breuerc
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Thank you so much, everyone! I really appreciate it!
DustyKat, I wanted to look specifically at the effects the disease places on the parents at the time they are going through it. After the age of 18, parents may not remember accuartely the stress they were under. There are also "within the last week and within the last year" specific questions which wouldnt be very relevant in your case. Thank you though for the thought!
Also, I am looking for both mothers and fathers, so please ask your spouses or any other parents you may know to complete the survey as well.
03-23-2013, 08:14 PM   #9
DustyKat
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I understand.

I will say though that my recall is like it happened yesterday!

Good luck with the survey!

Dusty.
03-23-2013, 09:14 PM   #10
CarolinAlaska
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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.
03-23-2013, 10:01 PM   #11
Johnnysmom
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Mom of Johnny
Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
Multi Vitamin
Vitamin D3 1000mg
Prayer
03-23-2013, 10:50 PM   #12
Hope345
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
03-24-2013, 12:00 AM   #13
Jmrogers4
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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
03-24-2013, 01:23 AM   #14
Jennifer
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I understand.

I will say though that my recall is like it happened yesterday!

Good luck with the survey!

Dusty.
Not to mention that many people don't realize how much stress they're actually dealing with until they have some time to relax and reflect.
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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.
03-24-2013, 01:40 AM   #15
DustyKat
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Very true Jennifer. I have often said that I find dealing with the demons harder in many ways when they well as I have far less to focus on and in those circumstances your imagination can be your worst enemy.

Dusty.
03-24-2013, 03:26 AM   #16
Ands
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.................................................. .............................
Son Joseph diagnosed July 2012 (aged 10)
Crohn's: oesophageal, ileal, oral and perianal disease
6 week exclusive modulen
8 weeks predisolone
2 weeks azathioprine - stopped after reaction
6-MP 50mg - stopped June 2014 (after 18 months)
Currently on:
Sennoside 18ml daily
Multi Vitamin
Omeprazole 10mg
Prochlorperazine 2 x 5mg
Predisolone as a mouth-wash (as and when needed)
03-24-2013, 09:03 AM   #17
Breuerc
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Thank you, thank you, thank you!
03-24-2013, 12:21 PM   #18
AZMOM
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
03-24-2013, 04:00 PM   #19
Mehita
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Please come back and let us know how your thesis goes. A very interested audience here. Good luck!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
03-24-2013, 04:34 PM   #20
jmckinley
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Done!
03-24-2013, 07:04 PM   #21
my little penguin
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DS - -Crohn's -Stelara
03-25-2013, 01:06 AM   #22
vtfamily
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...and that is one more!
03-25-2013, 05:22 AM   #23
Catherine
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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)
03-25-2013, 07:45 AM   #24
QueenGothel
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