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Crohn's Disease
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Posted 1/8/2014 10:15 AM (GMT 0)
Hi Everyone

I have had crohns now for nearly 15 years and found out 5 years ago that I had osteopenia due to lack of absorption of calcium which I now take supplements for and have had two dexa scans.

I have to say though recently I have really been suffering with my shoulder, with pain etc which I have been to physio for but it seems to just be getting worse with pain now affecting my back too.

I also notice that if I do any tasks which involve any sort of weight, evening changing the bed covers I notice it in my arms and hands in terms of some pain.

I know I am rambling but dont know how to best describe it.

Could the pain i experience be part of the osteopenia or something else? Just wondered if anyone else has similar experiences.

Thank you.

Posted 1/8/2014 2:51 PM (GMT 0)
Joint pain sometimes comes with the Crohn's. Is your Crohn's well controlled? What are you taking for it?

The most common joint pain among people with IBD is in the peripheral joints (hands, feet). But shoulders, hips, back, knees - these are all possible too. For many years my joint pain was worse than my bowel problems. Ultimately I ended up seeing a rheumatologist, who put me on pred to get the joint pain under control and then worked with my GI to get my bowel disease more aggressively treated - the common thought among GIs is that joint pain happens when the bowel is inflamed.

My GI added sulfazine to my treatment protocol. This is a 5-ASA that was originally targeted at arthritis, but it has been found to be effective at reducing bowel inflammation while also somehow reducing joint pain. I've been taking it for a long time and my joint pain is essentially gone.

The last thing I will say is that going gluten free really resolved the last bit of lingering joint pain (in an old knee injury).

I hope that is helpful.
Posted 1/8/2014 3:18 PM (GMT 0)
Thanks for the response, I take 2g Pentasa twice per day, and my Crohns is well controlled, with no major flare ups in recent years. I did read someome else said sulfazine also helped them so might discuss this with my specialist when I next see them but as Pentasa has been so good at controlling my bowel I need to be cautious about switching.

As you say though I generally get the pain in my hands, shoulders and now areas of back , though I think the back is more muscle inflamation rather than joint.
Posted 1/8/2014 3:22 PM (GMT 0)
It's weird when we talk about joint pain with IBD - most of us understand that it's really in the connective tissue and not the joint itself, like it would be for rheumatoid arthritis. There's a specific term for this that I can never remember, but it has to do with inflammation of the tissue connecting the tendons to the bone.

I was also using Pentasa during my joint pain years. When I added sulfazine it was a simple addition, not a substitution.
Posted 1/9/2014 8:58 PM (GMT 0)
Hello All,
This forum is filled with powerful information. My son is 11 and was diagnosed over the summer. Now as a mom I am quick to chalk up his back and hip aches as growing pains. He had pain in his knees and hips in October and his dr put him back on prednosone for a very short time. We had a month of smooth sailing and now he has (what seems to be) a traveling muscle ache. For instance a week ago, he had pain on the side of his hips. It went away. Then yesterday, literally out of the blue, he said his lower back, the area right on top of his rump is achy. I have a call in to the dr but has anyone had pain like this from out of no where. How do I know what's Crohn's and what's growing pains? What do you do, I really dont want to keep going to prednosone...
Posted 1/9/2014 9:32 PM (GMT 0)
My pain would appear and disappear quite suddenly. My GI had a hard time believing me but one day, just by chance, I happened to have a GI appointment on the same day that my right pinkie decided to flare up. I showed up in his office with a bright red swelling on my hand (usually didn't get that red swelling thing, either, this was my lucky day!). He confirmed right away that I should see a rheumatologist.

And so should your son.

You should not have to go to prednisone to get this under control. There are other treatments! Since your son's diagnosis is still new I suppose you are going to have to make changes fairly often, especially since he's just entering his big growth years. Please get a rheumy on your team.

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