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


 
04-11-2016, 07:26 PM   #91
Optimistic
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Kim, I am so sorry to hear this about Caitlyn. I'm sure you are shocked and frankly I would be angry also!
There really aren't any good words other than we are sending you and her lots of support, prayers, positive energy and hope.
04-11-2016, 07:27 PM   #92
pdx
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I'm so sorry to hear this, Kim. I really hope that the surgery goes well and that Caitlyn gets a long, long remission afterwards.
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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
04-11-2016, 07:47 PM   #93
Maya142
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Really sorry to hear today was so hard. I'm glad they have found the cause of her belly pain but sorry to hear she needs surgery again . Poor Caitlyn!!

I hope the surgeon can get you in quickly for the surgery.
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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
04-13-2016, 09:19 AM   #94
Sascot
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Sorry things didn't go great! Really hope the surgery makes a big difference for her pain levels. Thinking of you both.
04-13-2016, 09:57 AM   #95
Tesscorm
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Ditto all above!! I'm so sorry she's facing another surgery but am sending lots of hope and wishes that this is finally it!! That she'll be able to come out of it feeling well and in remission for a long time! She (and you) most certainly deserve it!
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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
04-13-2016, 11:33 AM   #96
kimmidwife
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We are meeting with the surgeon today. Will update after.
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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.
04-13-2016, 07:17 PM   #97
kimmidwife
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The meeting went really well.
The surgeons office staff was amazing. They write the kids name on the table paper in big fancy letters (Disney like) before the kids gets there. So nice!
We were really impressed with the surgeon she really seems to know her stuff.
She said the area she has to remove is not to big and she is going to try to do it laparoscopically. The surgery will be next week.
04-13-2016, 07:28 PM   #98
pdx
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Glad you liked the surgeon, and I hope the surgery goes well.
04-14-2016, 05:52 PM   #99
Sascot
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That's great you liked the surgeon, best of luck for the surgery!!
04-14-2016, 07:03 PM   #100
Tubes
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Liking your surgeon is always great. Good luck with the surgery
04-20-2016, 11:24 AM   #101
kimmidwife
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Sorry I did not update yesterday. I barely slept the night before and was so tired I just crashed.
The surgery went well. The surgeon said that she had a severe ulceration right past the stricture and as soon as she touched it it started bleeding and bleeding. She said thank goodness she had it removed when she did because another few days and she may have had a severe GI bleed or a rupture into her abdomen.
They did manage to do it laparoscopally Thankfully. She is having really severe pain though and I think it is partly trapped gas.
She wasn't able to urinated after the surgery and they finally put in a catheter last night and emptied three bags of urine it was not good and they only did it because we insisted after she sat and sat and couldn't go.
I was not pleased about that.
The pain team has been really good though and they are going to change her from dilaudid to morphine as soon as they can get a new pump to see if it helps more.
Meanwhile I am going to try to convince her to try and get up and walk a little bit.
04-20-2016, 11:35 AM   #102
my little penguin
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Glad her surgery is done
Hope she heals quickly and this reduces her pain
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DS - -Crohn's -Stelara
04-20-2016, 11:46 AM   #103
Maya142
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Glad it's done and hope Caitlyn feels better SOON!!
04-20-2016, 11:55 AM   #104
kimmidwife
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I convinced her to get out of bed and sit in the chair, Cause this Momma don't play! Lol!
We changed her into her own pajamas and I think she is felling a drop better.
04-20-2016, 01:01 PM   #105
pdx
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Hoping for a fast recovery for her, and that the surgery gives her some relief from her pain.
04-20-2016, 01:09 PM   #106
Sascot
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What a relief she had the surgery when she did then. Glad she is a tiny bit better, hope they get the pain under control so she can just concentrate on healing.
04-20-2016, 06:16 PM   #107
my little penguin
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Your own pj makes a big difference
04-20-2016, 07:30 PM   #108
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I don't know how I missed all this.

I'm glad the surgery went well. And I hope the pain improves quickly.

C's bladder slows with anesthesia and painot meds. We knew going into surgery. They wanted to remove the catheter shortly after surgery and C begged them not to. They did and ended up having to reinsert it. C was so pissed. It was the worst part of the whole process. Although, ativan made reinsertion mostly painless.

Hugs. Remember to take time to rest for yourself.
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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
04-20-2016, 09:29 PM   #109
kimmidwife
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Rant: what has happened to nursing care here in the USA?

I was very surprised the nurse did not encourage her more to get her moving. It really upset me.
Nursing seems so different now then when I was working the floor 20 years ago.
We always got our post op day1 patients out of bed at least to a chair. We would help them wash and change their clothes and then their beds. Then in the afternoon we would help them take a small walk in the hallway and we or the nursing assistant would walk with them.
It seems like the personal touch is really being lost from nursing. It is all about computers and charting charting charting.
It makes me so sad about what the nursing profession is becoming.
End rant.
Feeling better now.
04-20-2016, 09:39 PM   #110
my little penguin
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Completely agree
At kiddie hospitals the parents are expected to do 90% of it
04-20-2016, 09:39 PM   #111
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Lots of hugs. I hope this surgery gives her some relief. Sorry the nursing staff isn't so helpful. Thank goodness you are there with her. Hang in there!!
04-20-2016, 10:01 PM   #112
Lady Organic
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All my best thoughts to you and your daughter.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
04-21-2016, 08:15 AM   #113
kimmidwife
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Morning update,
She had a terrible night. Crying and saying she hates her body. I think it was partly a reaction from the anesthesia and the meds. But it is so heartbreaking. I am just emotionally exhausted.
04-21-2016, 08:53 AM   #114
pdx
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Big hugs, Kim. Nights are so hard in the hospital, and the first day post-surgery is extra hard. Hopefully you're through the worst now. Do you have someone who can spell you today, so that you can get some rest?
04-21-2016, 09:34 AM   #115
Maya142
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Sending HUGS . I hope Caitlyn feels better soon!!
04-21-2016, 11:16 AM   #116
Tesscorm
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Just sorry she (and you) have had to go through another surgery. (But am glad it's been done before more complications set in!! :eek). I hope she starts to feel better soon and then stays that way for a LONG time!

(And, yes, we've been experiencing similar with nurses here. My dad's been in three hospitals since end of January and we've seen our share of mediocre nurses! But, have also had some great one. ) I don't have the perspective you have but it does seem hospitals/services have changed over the years.
04-21-2016, 04:56 PM   #117
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Thinking of you both, hope things improve soon!
04-21-2016, 05:03 PM   #118
kimmidwife
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She is doing better today.
She actually had two BM's! But they don't want to advance her diet yet they want to take it slow. She is using the PCA pump much less today. They said they will remove it in the morning and if she does well on PO meds she can go home later in the day.
04-21-2016, 05:05 PM   #119
Maya142
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Way to go Caitlyn!! So glad she is feeling better. We're thinking of her !
04-21-2016, 05:07 PM   #120
Clash
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Ooh I hope things improve and she is off to home tomorrow! So glad she's feeling a bit better!
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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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