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08-02-2016, 05:58 AM   #1
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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As

I am posting here because my problems started when I was a child so not sure if anyone here will be able to advise me, as I know there are several parents here with kids with this issue.

I am 27 years old and I have Crohn's Disease of the small bowel. I first had symptoms of this when I was about 16/17 years old. However, prior to this I have suffered constant joint paint.

As a child my knees would always hurt when sitting in the car and I would need to stretch them out for example. As time went by, more joints started causing me pain. When I was about 15 my ankles started cracking really loudly and when I was 16 my shoulders would really ache and I would need to crack them. When I turned 19 my hips started doing it. In the last couple of years my fingers and wrists have also started doing it.

The worst pain is in my hip, I always feel like it aches and I need to move it around and crack it. Sometimes it can be difficult to fall asleep because my joints particularly my ankles and hip ache. I have never undergone any tests for this. I mentioned it for the first time to my GI in April and she said she felt when I get my Crohn's under control, my joint symptoms may go away too. I am worried though, could I possibly have AS and permanent damage? Or would my symptoms be a lot worse if any permanent damage had took place and perhaps this is just simple aches and pains associated with Crohn's?
__________________


History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
08-02-2016, 06:50 AM   #2
Clash
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You could schedule an appt. with a rheumatologist familiar with the EIMs of CD.

My son has axial SpA and peripheral type 1 arthropathy. When his axial pain is at its worse he can't get out of bed. He has no damage showing on xrays yet so it just the inflammation flare of the SpA.

Maya142, my little penguin, afidz these members also have a child that deals with these EIMs or they suffer with it themselves
__________________
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
08-02-2016, 06:57 AM   #3
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Ah OK. Here in the UK I can't schedule an appointment myself with specialists, I must be referred. And annoyingly it is very difficult to get a referral. I did not get a referral to a GI until my bowel perforated despite 5 years of symptoms. I have heard GPs etc get awards not to refer and are under a lot of pressure not to refer to specialists due to cost-cutting. :-(
08-02-2016, 07:16 AM   #4
CarolinAlaska
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Join Date: Jan 2013
Location: North Central, Illinois

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Yes, I would push for a rheumatology referral. Remind your primary doctor that untreated rheumatologists conditions can cause irreversible damage and that you'd like it seen to sooner than later. Are your inflammatory markers elevated?
__________________
Carol
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.
08-02-2016, 07:54 AM   #5
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Thanks Carolin, my blood tests showed inflammation prior to prednisolone and azathioprine but are now all in the normal ranges.
08-02-2016, 09:03 AM   #6
CarolinAlaska
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Join Date: Jan 2013
Location: North Central, Illinois

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When my daughter was still getting symptoms in spite of normal tests, they called the residual symptoms IBS. They did eventually calm down after her 6MP was tweaked.
08-02-2016, 11:29 AM   #7
Maya142
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I would definitely push to see a rheumatologist. Hip pain is very common with SpA. Other symptoms that are common are morning stiffness and pain that get better with movement. Pain with rest (trying to fall asleep for example) is very common.
__________________
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
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