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03-22-2013, 04:19 AM   #1
CDJ
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Update on my son

After me writing last weekend as to how concerened I was over my son Josh, he was admitted to hospital on Monday straight from clinic, and we are still here.
When we got to clinic and Josh was weighed, they found he had lost another 2 .5kg even on the steriods. He has now lost 16kg [ 35lb ]. All of a sudden alarm bells seemed to go off that there actually is a problem, so we were admitted straight away.

Yesterday Josh went to theatre to have another endoscopy, they also put in a capsule camera which stays in the body recording what is happening in the stomach and bowel. While he was under they have inserted a NG tube, which will stay in for 6 weeks, and feeding modulen through it, and he has had loads of bloods taken.

We are now waiting for all results, bloods will take a few days, so staying in over the weekend as well.

I am really hoping that we can now get some answers, and at least we are in the right place
03-22-2013, 06:07 AM   #2
Niks
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Bless you! It must have been a bit of a shock to have him admitted there and then. Glad he is in the right place and being looked after.

NG tube should help a lot.

Good luck for results and tests

(((HUGS)))
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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!
03-22-2013, 06:18 AM   #3
upsetmom
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..Good luck with the results. I hope you get some answers.
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Daughter dx CD March2012...
(aged 14)

Currently on:
40mg Humira
125mg Imuran




Dx Premature Ovarian Failure 2014



03-22-2013, 09:57 AM   #4
Devynnsmom
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Good luck, I hope you get answers!
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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
03-22-2013, 10:02 AM   #5
Tesscorm
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Glad he is in the hospital and having tests done!!! Hopefully, you will get some answers!

The formula feeds should help!!!

Hugs...
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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
03-22-2013, 10:45 AM   #6
Jmrogers4
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Glad he is in the hospital and on the path to answers. Certainly is scary when it all happens so fast though.
Hope the formula puts the weight back on and he is feeling better quickly.
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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
03-22-2013, 01:56 PM   #7
Johnnysmom
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I hope this second scope goes well and you get some more answers. ((((hugs))))

Did they start him on a maintenance med when they started the steroids?
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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
03-22-2013, 03:05 PM   #8
Willowcat05
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Hope everything works out all right . My son was on Modulen for 8weeks last year and done really well on it he gained about a stone in weight and everything settled down in his tummy. He is now not so good having pain when eating he has also lost about 4lbs in the last week also feeling very tired we are waitin on Fecal calprotectin results to come back before deciding whether to go back on Modulen.
03-23-2013, 04:19 AM   #9
DustyKat
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Whoa, so much happening for you and your boy... I so hope the hospital stay gives you the answers you need to get your lad well on the road to recovery!



Dusty. xxx
03-25-2013, 02:04 PM   #10
CarolinAlaska
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Have you gotten results on any of the tests? How are things going? Still in the hospital? Thinking of you.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
03-26-2013, 02:38 AM   #11
CDJ
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Yes, still in hospital. Start of day 9 today. Josh is doing much better due to the NG tube, more alert and more energy.
Still no results, I really hope to have some today, and maybe we can get home tomorrow. Even I haven't been home since he was admitted and starting to get cabin fever now.
03-26-2013, 03:34 AM   #12
Sascot
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Glad things are improving. Yikes - 9 days, don't blame you for cabin fever. Hope you get home soon!
03-27-2013, 12:39 AM   #13
CarolinAlaska
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I hope you get results soon. I'm glad the EN is helping. I think it is the best thing we've done for Jaedyn's Crohns so far. Healthy and useful!
03-27-2013, 12:45 AM   #14
Crohn's Mom
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I can so relate with that cabin fever CDJ !

Hoping you got some good results today and you are home resting !
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Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
03-27-2013, 07:56 AM   #15
CDJ
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Still in hospital, day 10 now Josh is doing so much better, it is hard to believe how bad he was just a week ago

He is being kept in for now to make sure he is coping with the NG tube and modulen okay, and to get him eating more. He is just eating ham sandwiches at the moment, but that is far more than he has eaten for the past few weeks! They are letting him do this at the moment to encourage him to eat.

His phosphate levels are low, so he is having supplements for that.

We are still waiting on results from the capsule camera, apparently these can take a good few days.

Some really good news we have had is that Josh finally had a full blood test yesterday. For those of you who have read my posts on his fear of this will understand the huge achievement this has been for him I am so proud of how he coped with this and it is partly in thanks to the psychiatict [ sp ] who has worked so hard with him, and for finally getting a sympathetic doctor who took his time with Josh. I really feel we have turned a corner with the blood, which will make life so much easier now.
03-27-2013, 08:15 AM   #16
Farmwife
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Good for him for getting his blood out. Now send that therapist to us!
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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
03-27-2013, 08:26 AM   #17
Devynnsmom
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Way to go Josh!!! Devynn was terrified of having blood drawn too. She is so much better now, literally no tears anymore! It makes such a difference for us as mom's too because it hurts so much to see our kids hurting and afraid! (((((hugs))))) I hope he continues to improve and is home and back to his normal self!
03-27-2013, 01:39 PM   #18
CarolinAlaska
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My daughter hates getting her blood drawn too. It causes a lot of anxiety, but she let's us do it eventually. I'm so glad your son is doing so much better.
03-27-2013, 01:51 PM   #19
Niks
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That is AMAZING!!!! Well done Josh .. Good luck with pillcam results..

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