01-22-2015, 12:09 PM   #1
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Help please!

B has bleeding, urgency for toilet, fatigue, feels he has no control over bowels, awful when he goes.

My question is what to do?

We have scopes scheduled in 3 weeks but not sure we can do nothing til then. But what could we do?

On no other meds as taken off Aza a year ago due to low WBC. In a vital exam year but he can do no work at the moment and is not getting to school. He is 16.

Speaking to IBD nurses tomorrow anyway re bowel prep etc for scopes.
01-22-2015, 12:27 PM   #2
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Location: California

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Poor thing! I would definitely speak to the docs office because you don't want anything to mess with the results of scope. How about EEN for the next few weeks. I don't know what that affect will have on scopes but maybe worth asking.
Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Vit d 2000IU
Multi vitamin plus iron

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-22-2015, 12:28 PM   #3
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Maya142's Avatar
Does he have accommodations at school? Could his teachers send work to him so he could complete it at his own pace?

I would definitely tell the nurses how awful he's feeling just in case they can move the scopes up. My daughter's GI once said she would admit my daughter if we couldn't get insurance to approve some tests (pillcam I think?) to speed things up. Not sure if that might be an option?

I really hope he starts feeling better .
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
01-22-2015, 12:29 PM   #4
my little penguin
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I would talk to the doc to see if he could be admitted so they could scope urgently
They may need evidence to qualify for meds
EEN could fix it but it would be temporary
DS - -Crohn's -Stelara -mtx
01-22-2015, 01:06 PM   #5
Senior Member
I would hesitate to start any sort of treatment because you don't want to alter scope results. Hopefully they can scope him sooner! Stay on them Momma!
A is 13

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Hizentra, Flovent, Zyrtec, Cellcept
01-22-2015, 01:09 PM   #6
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Chester31's Avatar
Fingers crossed they get him in sooner for scopes and you get some answers x
01-22-2015, 01:11 PM   #7
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Fuss. Tell them your son can not wait that long. Tell them it's unexceptable. It's worked for me plenty of times.
01-22-2015, 01:35 PM   #8
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Location: Manchester UK

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Keep strong you will get there.Go in as a emergency,things get done quicker.I have done it my self.
There is light at the end of the tunnel trust me.
01-22-2015, 01:44 PM   #9
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Farmwife's Avatar
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Location: Michigan

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Out of curiosity how low did his wbc go?
I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
01-23-2015, 08:40 AM   #10
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Hi All

Thanks for your replies. After speaking to IBD nurses we are going back on shakes (EN) and buscopan. Trying to stay off pred suppositories so scope picture isn't affected. same date for scopes.

Bloods this pm and pre op stuff so we don't have to go back.

As expected no other decisions until done scopes. If it is a one off eg exam he can use imodium otherwise try and avoid it.

So how do we get him to school?! Still bleeding when goes and urgency still there...

Farmwife - last WBC was 4.1 I think but I can let you know Monday when today's results are in.
01-23-2015, 12:51 PM   #11
Senior Member
school probably needs to come to him for a while.
01-23-2015, 01:48 PM   #12
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Join Date: Jun 2011
Location: Ontario

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Have you tried talking with his teachers/principal? Pre-dx, my son, 16 at the time, started getting stronger symptoms in March and missing school, this went on and off until he was diagnosed in mid-May and then he missed two+ weeks. On his return, we had a meeting with all his teachers, a guidance counselor and his principal and they worked a plan for him. They allowed him to miss certain assignments and only forced units that would be on exams. I don't recall exactly but I think some of the teachers (ie math, etc.) set up a schedule for a bit of extra tutoring during lunch. He did end the year with marks lower than he probably would have had but, they weren't horrible.

While he was away, he did have homework sent to him.

Definitely speak with the school, they may be quite accommodating!
Tess, mom to S, 22
Diagnosed May 2011

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
01-23-2015, 03:37 PM   #13
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School are already amazing. We are in the UK and this is a major exam year - GCSEs so missing inout from the teachers is very difficult. He has extensions on loads of stuff but he has to be in to actually do them. At the moment he is too exhausted and poorly to do anything at home. So I have to be calm and take the hospital advice.

Very difficult...
01-25-2015, 05:19 AM   #14
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Are there no accommodations available through the Department of Education for students with disabilities, including chronic health conditions?

Dusty. xxx
Mum of 2 kids with Crohn's.

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