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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!


 
01-03-2016, 01:52 PM   #1
kimmidwife
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Just realized it has been 7.5 years since diagnosis!

Holy cow!
I just realized we have been fighting Crohn's with my oldest daughter for 7.5 years! This forum has been amazing. Without you guys I don't think I would have made it through! Love you all!!!!!
In all this time my girl has never really achieved complete remission. The closest we came was the two years on low dose naltrexone during which she had very limited pain and her disease was the least active on biopsy.
I am hoping we are close again with entyvio though her pain is bad again right now. Her next infusion is Tuesday.
Now we begin the fight for my second daughter. If her medication ever gets here! It was supposed to arrive last week and still hasn't.
We need a cure for this darn disease!!!!
#ihatecrohns!!!
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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.

Last edited by kimmidwife; 01-03-2016 at 01:54 PM. Reason: Addition
01-03-2016, 02:13 PM   #2
Maya142
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I'm so sad that she hasn't ever been in remission. I hope the Entyvio helps her pain - poor kiddo .

How is your little one feeling?
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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
01-03-2016, 02:43 PM   #3
pdx
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Really hope the Entyvio is the medicine that finally works for your daughter. And that your younger daughter finds a quicker path to remission. (And yes, my dream is for a cure!)
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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
01-03-2016, 05:50 PM   #4
kimmidwife
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Maya,
She is doing okay right now.
01-03-2016, 09:48 PM   #5
CarolinAlaska
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I'm sorry that your girls have to suffer thru this, Kim, and after so long...
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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.
01-04-2016, 12:19 AM   #6
ronroush7
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I am sorry your daughters are suffering. You are right. We need a cure for this disease.
01-04-2016, 11:23 AM   #7
Tesscorm
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Lots of hugs Kim! I hope your younger one is able to reach remission quickly and, really hope entyvio will finally bring Caitlyn to remission and some deserved relief from crohns!!

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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
01-04-2016, 11:25 AM   #8
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So sorry both of your kiddos have to deal with this dreadful disease!!

Hopefully 2016 will be the year of the cure!!
01-04-2016, 11:31 AM   #9
Mehita
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Our kids must have been dx'd around the same time. Seems like yesterday some days, but also like we've been fighting this forever too.

I hope 2016 is her year!
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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
01-04-2016, 01:35 PM   #10
ronroush7
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I hope 2016 is better

01-04-2016, 02:51 PM   #11
Sascot
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Wow, can't believe it's been that long! Here's hoping for a good 2016 for both girls
01-08-2016, 12:55 AM   #12
kimmidwife
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Caitlyn's pain has not improved this time after the entyvio. We have an appt with the doctor for Monday. We may be looking at surgery to try to get rid of the area around the anastomoses that won't heal up but I am worried that it is just going to keep reoccur I f in that same area when they reattach again.
01-08-2016, 12:58 AM   #13
ronroush7
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Hoping for the best.

01-08-2016, 01:31 PM   #14
Sascot
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Really sorry to hear that, very frustrating if they can't guarantee the surgery would fix it.
01-11-2016, 02:17 PM   #15
kimmidwife
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Caitlyn is not doing well and I realized this morning her appt is tomorrow not today. (Good thing I always check the calendar first thing in the morning.) she is having worse and worse pain and having blood in her stools again.
01-11-2016, 02:26 PM   #16
SUNIT
 
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Really sorry to hear that but hopefully she is doing otherwise fine....
01-11-2016, 02:55 PM   #17
Madhu
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Amen to that. We definitely need a cure soon. Hugs to you and your girls. I hope this year is awesome for you guys!!
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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
01-11-2016, 07:31 PM   #18
ronroush7
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Caitlyn is not doing well and I realized this morning her appt is tomorrow not today. (Good thing I always check the calendar first thing in the morning.) she is having worse and worse pain and having blood in her stools again.
I hope everyone is doing fine soon.

01-11-2016, 07:53 PM   #19
Optimistic
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I hope tomorrow comes fast and Drs have some new options tomorrow.
01-11-2016, 08:28 PM   #20
Maya142
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Will be thinking of you guys .
01-11-2016, 10:18 PM   #21
Tesscorm
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I hope you get some answers or direction tomorrow!
01-12-2016, 06:01 AM   #22
Sascot
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Sorry to hear that. Hope they can help her tomorrow!
01-12-2016, 10:22 AM   #23
kimmidwife
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Thanks everyone. Appt is at 1pm and we have to drop a stool for a fecal calp. this morning. Our doctor wants to see how her numbers are trending to see if the entyvio is helping at all.
01-12-2016, 05:40 PM   #24
kimmidwife
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The doctor thinks maybe Caitlyn has Cdiff again. He wants to get a culture and fro her to start a medicine called Alinia. It is similar to flagyl but supposedly with less side effects. He also wants her to try Donnatal again. She is also having some back pain in the area they saw the kidney stone so he wants her to have an US. I think that is everything.
01-12-2016, 05:49 PM   #25
ronroush7
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The doctor thinks maybe Caitlyn has Cdiff again. He wants to get a culture and fro her to start a medicine called Alinia. It is similar to flagyl but supposedly with less side effects. He also wants her to try Donnatal again. She is also having some back pain in the area they saw the kidney stone so he wants her to have an US. I think that is everything.
Best to jer

01-13-2016, 04:21 PM   #26
CarolinAlaska
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The doctor thinks maybe Caitlyn has Cdiff again. He wants to get a culture and fro her to start a medicine called Alinia. It is similar to flagyl but supposedly with less side effects. He also wants her to try Donnatal again. She is also having some back pain in the area they saw the kidney stone so he wants her to have an US. I think that is everything.
I hope the new antibiotic works.
01-13-2016, 06:15 PM   #27
kimmidwife
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Thanks guys. Tomorrow we see the new neurologist. Hoping maybe he has some good ideas about her pain since her doctor thinks at least some of it is neuropathic pain of the GI tract. I have heard really nice things about this doctor fingers are triple crossed.
01-14-2016, 01:24 PM   #28
kimmidwife
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We just saw the new neurologist. He was very nice. Caitlyn's neuropathies in her feet and hands have actually improved since we saw the pain management doctor who discovered them last May. He said adding the B complex and Folic acid seems to have helped.
For her neuropathic stomach pain he wants her to try Lyrica.
I am wondering if anyone else's kids have tried Lyrica and what their experience was?
01-14-2016, 03:32 PM   #29
Maya142
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M has been on Lyrica for the last two months. Unfortunately, it hasn't really helped with pain. The only side effect she had was drowsiness during the day, and once we reduced her dose in the morning, that went away.

Hope Caitlyn does well on it - good luck!
01-14-2016, 05:36 PM   #30
Catherine
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Has anyone tried Capsaicin, it an ointment?
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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)
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