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


 
04-22-2016, 07:43 AM   #121
Mehita
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Hugs to you. Just take it all one day at a time...
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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
04-22-2016, 09:21 AM   #122
kimmidwife
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They said they are advancing her diet but of course it still has not been done yet. She had another BM. So hoping they let her come home. Fingers triple crossed.
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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.
04-22-2016, 11:19 AM   #123
pdx
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So glad that she's doing well, and fingers crossed here too that she can go home today.
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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
04-22-2016, 05:35 PM   #124
Sascot
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What a relief she's a bit better. Hope it's not too long till she can go home!
04-23-2016, 03:24 PM   #125
Optimistic
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Kim, did she come home yet? It makes complete sense that she would be frustrated and over this. She obviously will have expert care at home!

She has made it through the worst part so celebrate her. I'm hoping the surgery pain will end soon so that she can see all of this was worth it and start her life fresh, feeling good.

Fingers also triple crossed until you give the word.
04-25-2016, 10:57 AM   #126
kimmidwife
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Hi Everyone,
Caitlyn came home yesterday. I am having an issue with my back and am in excruciating pain. Not really sure what is going on. Caitlyn is doing better. She has not taken much pain meds at all. She says it hurts a lot when she eats and the surgeon said that is normal.
04-25-2016, 05:19 PM   #127
pdx
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So glad to hear that Caitlyn is home and feeling better. Hope that eating gets easier in the days to come. And I really hope that you are feeling better soon--back pain is so horrible.
04-26-2016, 09:51 AM   #128
Tesscorm
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Just thinking of you, hoping both you and C are improving!
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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
05-01-2016, 05:23 PM   #129
kimmidwife
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Hi everyone,
Sorry I have not updated in a few days. My back pain turned into crazy neck pain. It has been a rough few days.
Caitlyn is finally doing a little better today. Her mood is better and she is complaining less of pain fingers triple crossed that she is on the mend.
05-02-2016, 12:43 AM   #130
CarolinAlaska
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Hi Kim, sorry I missed all this. We had a really rough month in April and I had to give myself space. I hope you are both much better quickly.
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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.
05-02-2016, 11:36 AM   #131
kimmidwife
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We took the sterns trips off her incisions, she has three small ones since the surgery was laparoscopic. It is very red and angry looking around each one. No fevers though. It almost looks like an allergic reaction to me. I have a call into the surgeon. I am waiting to hear back.
05-04-2016, 05:51 PM   #132
kimmidwife
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We saw the surgeon today. The redness and rash around the incisions are definitely an allergic reaction which is what I figured.
The one thing the surgeon is concerned about though is the amount of pain Caitlyn is having still. She wants her to have an X-ray tomorrow morning and to have blood work done.
05-05-2016, 03:18 AM   #133
Sascot
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Fingers crossed the X-ray and bloods don't pick up any issues!
05-05-2016, 10:58 PM   #134
kimmidwife
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I wanted to update, if you didn't see my last update Caitlyn continues to have severe pain two weeks after surgery.
The doctor sent her for an X-ray and blood work today. The blood work was normal. The x Ray showed her to be full of stool. The surgeon wanted her to increase her miralax and see if things start moving. She took four capfuls and went a tiny bit. Still having severe pain especially after eating.
I decided to call the GI Doctor and get his input. He thinks she has a partial ileus. Basically your intestines stop coordinated function after surgery and then have to get back to normal. For some reason hers has not gotten back to normal totally even though some parts are back. He wants us to give her two ducolax at bedtime and see if that helps things get moving.
05-05-2016, 11:01 PM   #135
Maya142
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Poor Caitlyn - she deserves a break! I hope the Dulcolax works and she starts feeling better soon .
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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
05-06-2016, 09:16 AM   #136
pdx
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Hope she's feeling better today, Kim.
05-06-2016, 10:30 AM   #137
Optimistic
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I checked in just to case there was some good news about Caitlyn. I hate this is happening to her. What horrible timing - as if any timing is good - but may this come to an end soon!
05-06-2016, 05:51 PM   #138
Sascot
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Thinking of you both. Hope it works!
05-06-2016, 05:57 PM   #139
kimmidwife
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Update:
She took two ducolax last night at bedtime. She went seven times today. But pain is not better. I am kind of at my wits end with this. I don't know how to help her. 😓
Pain really stinks.
05-06-2016, 06:41 PM   #140
my little penguin
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Is she on abdominal pain meds ( levsin , bentyl , gabopentin)?

How about tens unit ?
Hot packs /ice ?
05-06-2016, 10:01 PM   #141
kimmidwife
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Update to my update:
We noticed the area around one of the incisions got very red. Spoke with the on call doctor and we are on the way to the ER.
He thinks she has an infection.
05-06-2016, 11:20 PM   #142
pdx
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Hope you're able to get seen quickly, and that resolving the infection helps with the pain.
05-07-2016, 04:13 AM   #143
Sascot
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Sorry to hear that! Hugs
05-07-2016, 06:28 AM   #144
CarolinAlaska
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It's horrible. I hope they get to the bottom of things soon so she can get relief.
05-07-2016, 09:56 AM   #145
kimmidwife
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Hi all,
Just moved her to a room from the ER. Her blood work came back normal. The CT scan showed Free fluid building up in the abdomen in the area under her belly button. (Where the redness is). The area where the resection was done does not appear to be leaking but they can't figure out where the fluid is coming from. They started her on antibiotics and finally gave her some pain meds at about 2am.
Waiting to see the surgeon and also spoke with the GI team to let them know she was admitted and what is going on.
05-07-2016, 12:30 PM   #146
kimmidwife
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Getting frustrated and upset. The surgeon said the report does not show free fluid and he thinks the pain is still backed up stool even though she went 13 times yesterday. I asked for the copy of the CT report and am waiting for it now. I also called the GI again and am waiting to hear.
05-07-2016, 08:06 PM   #147
kimmidwife
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Just spoke with an aquaintance who is an adult general surgeon and her husband has Crohn's disease. She thinks this sounds like a wound infection and she says with Caitlyn having been on steroids for so long and the entyvio maybe that is why her WBC count is normal and she still might have an infection.
05-07-2016, 08:38 PM   #148
Clash
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I'm so sorry for all your sweet girl is going through. You guys are in my prayers. I hope they find the issue soon and resolve it 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

Last edited by Clash; 05-07-2016 at 09:25 PM.
05-07-2016, 09:15 PM   #149
DanceMom
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Just spoke with an aquaintance who is an adult general surgeon and her husband has Crohn's disease. She thinks this sounds like a wound infection and she says with Caitlyn having been on steroids for so long and the entyvio maybe that is why her WBC count is normal and she still might have an infection.
Yes! The only time A's WBC is within normal limits is when she's sick. Otherwise it's always low.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
05-07-2016, 10:26 PM   #150
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Crohn's Disease Forum » Parents of Kids with IBD » Just realized it has been 7.5 years since diagnosis!
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