02-15-2016, 08:10 AM   #1
Join Date: Feb 2016
Joint Pain

My daughter has Crohn's disease and will be 15 this month. She has complained about join pain here and there over the years but it's never been a big problem. Last weekend she was complaining about it more than usual but took some Tylenol and seemed ok. She had Remicade last Monday, came home and slept and when she woke up she was in a lot of pain. We went to the ER Tuesday, they took some x-rays and blood work, gave her some Meds while we were there but didn't seem very concerned. She felt better we came home but had an appointment Wednesday with her GI. He was a little concerned about antibodies and had more blood work done. He didn't really seem to have answers for us. He referred us to a rheumatologist and is suppose to call today with blood work results. And that's it. Oh my husband insisted on something for the pain and she was given Tylenol with codiene. I mainly give it to her at night and it has helped her sleep better. I just feel like no one is helping her , myself included. She puts on a brave face at the doctors and I'm afraid we didn't express how bad it is for her. At home she is crying in pain. And all we can do is wait for the rheumatologist appointment. Does anyone have any advice for me? Oh and this week she says her stomach feels great and is not an issue at all. Yesterday she seemed a lot better than usual and went to sleep without even Tylenol but early this morning she needed it. She back to sleep now. Feeling so down.

Forgot to add he did order another colonoscopy / endoscopy as its been awhile. He wants to see what's going on.
02-15-2016, 08:33 AM   #2
Senior Member
Join Date: Mar 2012
Location: California

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How long has she been on remicade? Is she also on methotrexate? My older daughter was having some joint pain and we added methotrexate to her treatment and that helped but her pain wasn't as severe as your daughter's pain seems.

Sounds like the doc is looking into a number of things. Unfortunately blood work (antibodies especially) can take a bit.

In the meanwhile things like heat, ice, various pain gels and tens units sometimes work.

There is a remicade induced lupus but I would think your gi would be well aware of that and there are other symptoms of that.

I will page a few other parents of kids who have joint issues

My little penguin

Good luck with the rheumatology appointment. I hope it comes through quickly.
02-15-2016, 10:34 AM   #3
Forum Monitor
Maya142's Avatar
Hi and welcome!
There are various types of arthritis that are associated with IBD. My daughters have juvenile spondyloarthropathy. In kids, typically the large limb joints hurt - knees, ankle, hips but really any joint can hurt. SI joint or lower back pain is very common.

Signs of inflammatory arthritis include morning stiffness and pain that gets worse with inactivity (sitting through a movie, trying to sleep). Pain in the joints and redness and swelling are also common though you can definitely have arthritis without redness or swelling.

CCFA has a good explanation of the various types of arthritis that are associated with IBD: http://www.ccfa.org/assets/pdfs/arth...plications.pdf

Some flare independently of the IBD and others flare when the IBD flares. The treatment will depend on which kind it is.

It is great that she is seeing a rheumatologist soon.

While you're waiting, we use a lot of heat (electric heating pad), ice, Thermacare wraps, a TENS unit etc. Swimming or even just being in the water might help. A hot shower should also help. Sometimes alternating heat and ice helps (20 minutes each). We also got them heated mattress pads which they love.

We also use pain meds when absolutely necessary. My daughters were first put on Tramadol, which has helped a lot over the years.

X-rays will not show arthritis in the early stages. They only show damage, once it has been done. MRI's are more accurate and can show inflammation. So even if her x-rays didn't show anything, it doesn't mean a whole lot.

Glad they are testing for antibodies.

Hang in there!
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
02-15-2016, 11:07 AM   #4
Senior Member
Join Date: Mar 2012
Location: California

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Ah! Thanks to maya for pointing out you are new.

There is an excellent group on here called Parents of Kids....pop on over and introduce yourself when you get the chance.

I truly don't know where I would be without the support and knowledgeable advice from the group!
02-15-2016, 12:39 PM   #5
my little penguin
Forum Monitor
Join Date: Apr 2012

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Same here Ds was dx with JSpA two years ago
His started in his hands
Now his knees neck and heels plus sometimes hips have joined the party

Agree with swimming
Warm baths to soak ( or warm shower if sitting is too painful and stiff)
Heated mattress pad ( Ds loves)
Electric heating pads for neck and back etc
Volteran gel ( NSAID woth Gi/Rheumo approval of course)
Paraffin wax daily on Ds hands
Hand splints or braces to be worn at night in Ds cases help
Physical therapy - he plays cello for his hands and swims competively for his other joints )
Stretches daily
Exercise ball helps a lot
Squeezy balls clay etc depending on the joint
Homedics massage mats with heat

Hope the Rheumo has answers
DS - -Crohn's -Stelara -mtx

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