• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Time to say hello

I've been quietly reading for a while.. at 57 my computer "forum" skills are a bit elementary.. Was diagnosed with CD (pan colitis) 2 years ago, with an illness 5 years previously of "Reiter's Syndrome" - a good going R ankle arthritis, some urethritis, and a serious, difficult to treat, bilateral iritis. As someone for whom a tendency to constipation, and the size of the waistline was always a battle, I never dreamt the diagnosis could be Crohn's Disease!
Anyway, here I am, taking my 3gm of sulfasalazine daily, and wishing NSAIDS weren't relatively C/I in IBD (my iritis is quiet when I don't have the big "D", but the SI joints are seriously troublesome!!)
Main thing that strikes me, reading here, is the range of experiences we all have with CD, and how those of us in the older-onset age group maybe have a different disease pattern to the younger people.. (my heart really goes out to the parents/grandparents of newly diagnosed kids!)
Guess we're all in this together !
 
hi ellie, maybe in Australia 50 year olds are classed as "the older-onset age group" but in NZ we are still young to middle aged. and im not picking on you just because you are Australian, well maybe. Welcome to the forum, im sure you will meet lots of nice people here.
 

Trysha

Moderator
Staff member
Hello Ellie,
it is a fact that the older age group crohns does have a different pattern to the younger, it is supposed to be milder and easier to treat, but you could fool me!
I am also in the 50++ age group. Not fair when we are supposed to enjoy our seniority.
Hugs
Trysha
 

David

Co-Founder
Staff member
Location
Naples, Florida
Hi Ellie! Thanks for coming out of lurker status and sharing your story :)

By all means, feel free to take part more often if so desired.

All my best to you.
 
Thanks for the warm welcome everyone! It's great to be able to share experiences, and learn what others have found helpful.. So far, extra Vit D and generous servings of probiotics seem to be working for me. Oh, and just added some low dose amytryptiline to the NSAID topical gel to quieten the LOUD grumbling from the SI joints - seems to be helping ( tho it's only day 3..)
 
The only "real" IBD medication I'm taking is Sulfasalazine 3gm/day, usually as 1gm tds. I had a course of oral prednisone a couple of years ago when I was first diagnosed, and was initially started on salofalk granules + 6mp 25mg with the intention of increasing to 100mg, but 50mg seemed to cause a really "foggy brain", and I didn't think the actual "Crohn's" part was bad enough to warrant that.
Fortunately a new gastroenterologist agreed, and we seem to be managing reasonably. (CDAI 30-50, self assessed!)
Aside from that, I take fish oil, vitD, Ca, Mg, cranberry concentrate, probiotics, and apply topical NSAID gel and topical steroid cream(a bit of "off label" use!) for sacroiliac/costochondral achy arthritis. Fortunately the iritis seems to stay quiet unless I get a real bout of diarrhoea..
 

David

Co-Founder
Staff member
Location
Naples, Florida
Ellie,

I've got costochondritis as well. It has gotten much better with some exercises I do but the pain is still very annoying at times. Does the topical NSAID help it? If so, would you be willing to share what it is?

Thanks :)
 
The one I use regularly is Voltaren emulgel (it's diclofenac diethylammonium, available here w/o a prescription.) I rub some over any joint that's likely to play up every day after along with some diprosone cream every day after showering, bit like moisturiser! If they ARE playing up, I apply it 3-4 times a day. There's also a neurogenic gel (ibuprofen) I think it maybe works slightly better, but I seemed to get a slight "proctitis-y" feel at the same time ( could be coincidental!), so my regular is the Voltaren.
Isn't chostochondritis the pits? I even got a raised crp and a flow murmur the first time - now I up the topical doses at the first suggestion of trouble!
What are the exercises you do? Any suggested exercises for the SI joints? Funy how it seems to target those fibrous, relatively immobile joints in some of us
 

David

Co-Founder
Staff member
Location
Naples, Florida
Thank you!

Regarding the exercises I do, I purchased these and do a variety of chest, back, and shoulder exercises with them. It seems to help a LOT and has reduced my pain from, "This sucks so much someone shoot me" to, "This is kind of annoying". If you're interested in the specific exercises I do with them, I'd be happy to share.

I also had some benefit from prolotherapy as well for my costochondritis.
 
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