Severe Hip Joint Degeneration

Arthritis and IBD (Crohn's and UC) link up and can go hand in hand (that whole autoimmune thing).

My daughter had "hip" pain starting at age 5, and her first IBD flare at age 11, and they are now forever linked. Her arthritis was dx as sacroiliitis and enthesitis 3 months before her Crohn's flare.

She is on Humira and MTX, and in remission from both issues.

Hi,

I was diagnosed with bilataral avn. I had both hips replaced and it was WELL worth it. I was home in less than 48 hours.
Good luck

Sally, I have had chronic sacroilitis (linked to my disease and my k pouch's position + scoliosis) and treat it with Naproxin 1000 1xs/day & a stomac protector, pain meds when needed (often) and nothing else so far other than PT 2xs/week.
I was broadsided as a pedestrian (on a friggin crosswalk with a green light for me)...The guy was going the wrong way on a 1 way street and bounced me into oncoing traffic. That was 20 yrs ago and the pain has never gone away since.
Nothing seems to help and nothing makes it go away...they don't want to start on biologics here and although the hip join is still functional, some days I wonder.
The pain is severe and debilitating. Hard to walk some days, in tears most.
The anti-inflamatories no longer touch it and the physio just relaxes me but doesn't change the problem.
No solutions yet but I am still searching. This is France so I hold out little hope for a miracle.
All the Rhumy says is that the less we touch it, the better off we are.
No rest for the weary...
I hope that they come up with something for you.
Are you doing any physio? To stregthen those muscles?
Sharon

Sharon, why no to biologics for you? My daughter's pain was debilitating, and NSAIDS likely threw her over the edge and caused her first flare... But she's in remission now on a biologic. I'm curious.

Its not my decision Rachel, it is the Rhumy's...they do not 'believe' in them here...So far...barely even heard of them...every time that I mention it he says no, the Naproxin should be enough (fine, he is right...it is enough for my stomach but not my back!).
They haven't even started using them for UC as far as I know...was talking to a woman who has had pretty severe UC for the last 30yrs...she refuses to even discuss ostomies (they are not even talking about J pouches...As if that option does not even exist!) and are telling her that a collectomy = ostomy.
That's it. We will be recieving the first biologics in 2015 according to her G.I. and she is on a trial waiting list!
So in my case I would probably have to go back to the States to get them and that is impossible.
There has been a codification protocole revolution here in the last 10 yrs. If it is not on the 'list' it does not exist. That goes for both diseases and meds.
Meaning, if your particular disease isn't on the list then 'you can't have it'! Dito for meds.
Fun hugh?
Sharon

Hi guys,

Thanks so much rachel, lisa, and sharon, its such a pain in the arse, almost literally at the moment, as if its not bad enough having uc then managing the ileostomy and then we have to deal with a bucket load of other issues!

The pain is becoming unbearable theyve talked to me about pain relief but no pt and no other advice, literally i just got told you just manage with pain relief and when that no longer helps then we look into hip replacements, lisa how long ago did you have it done, and if you dont mind me asking how old were you when you had it, im 28 at the moment and it looks likely for me im just so worried about how life is afterwards??

Thanks so much, sally

Sally,
Is there anyone (your insurance provider???) who you can talk to about insisting on PT or 'water PT' which I found helps me a lot...I do 2 summer months in the pool. 1-1.5hrs almost every morning (I sneak in at 6am to avoid the sun and then work out until around 8 or 9, taking breaks when needed.
I start out very, very slowly, walking, doing 'toe'work (going up and down on the toes) and small leg circles etc...It takes me quite a while to work up to anything really strenuous but I can't risk aggravating the inflamation.
I use those kiddie styrofoam noodles that I pick up at the $store...also float with 1 under the knees and the other under the arms to relieve all tension on the back/hip.
It is in no way a cure but I do manage to help the supporting muscles, back and abs gain strenght and that helps with daily movement.
When I cannot be near a pool I aim for my bathtub (tiny-winy little thing but hot water is hot water).
I fill it with the hottest water that I can stand, add coarse salt (2 handfuls) and then do whatever exercises I can in there (tinny-winny little movements).
Since no one is offering me any help I have to help myself. I also work my abs and legs/hips for 1 min. morning and night while laying in bed. Raising 1 leg at a time and stretching my back, pushing my hips into the mattres and holding it for a few seconds...I do deep breathing at the same time to reinforce the efforts.
All of this just helps me to get through the day with the least amount of pain possible.
I have 3 different sizes of pilates/yoga balls...I lay flat with them under my back/hips and roll around too (a sort of backwards massage?)...Again, minimal relief but I take what I can get!
Right now my new trick is with my crutches. Since my bunion surgery I cannot walk too far without them so I go to the park and while putting the maximum of my weight on them, I walk in little circles (yes, I know...add the purple hat and they can cart me away!). I sort of hang my body off of them and it helps....you do what you can.
I hope that something here can help you to achieve some sort of pain relief Sally.
Hugs
Sharon

Wow. I didn't know France was so... Backwards in that way. Weird.

The rheumatologist at Children's said that with kids, they have a low tolerance for letting things go... With sacroiliitis, they said they have a way low tolerance to let it go. It's all about joint sparing.

I'd seek another opinion. My hubby was on the way to degenerative issues with his psoriatic arthritis, and Enbrel stopped the progression.

Rachel,
They are very advanced here on anything 'mediatic' (that gets press) but the Securité Sociale is broke so they cut back on a lot of drugs and anything expensive of new takes ages to get approved.
In the mean time, I will wait, suffer and cry.
Sharon

For what it's worth, a friend of mine was diagnosed with crohns in his teen years. It just went away but in his late 20s/early 30s he started getting problems with his hips and joints and ended up having hip replacement surgery. They think its auto immune related