Hi Everyone,

I've had my pouch since 2000..I haven't been back to this site in a while! But I really need your help. I've been suffering with hip pain - both left and right..
It's getting alot worse. My doc referred me to a Rheumotologist who didn't see anything on the xrays - ...(who I saw a few times)..My regular doc, who I liked alot & helped me through my UC, has left to go out of the country for many years. I have a new Doc now - and I want to know how best to proceed with her about what I need to do to get answers about my hip pain. I sometimes can't go to work .

I'm 45 yrs old..was on prednisone only once in the hospital before surgery.(Ulcerative colitis). When I see her - I want to know what the best way to uncover this is..and I've seen posts from years ago @hip problems. I know she will offer her educated opinion - But I want to hear from you - because you've been there - and know the drill.
I've been in alot of pain and I am just surviving and I am sooo bummed out and I just don't know what to ask for - if I get the "There doesn't look like a problem" from docs about xrays.

Thanks for your help..

-Karen in Maine

With hip pain that is fairly consistent, x-rays can be diagnostic, IF something shows up. If not, you need to move on to a bone scan or MRI if the pain has not resolved. You probably should also have a DEXA bone density scan. Your pain is a message that there is something wrong. It may not be serious, but first you need to rule out serious problems.

One thing you need to do is to be able to describe your pain very specifically. This helps with the diagnosis. Is it sharp or dull, burning or aching? Is it constant or intermittent? Is there tenderness when you press on it? Is it worse with activity or after rest? What reduces the pain and what aggravates it? Are you taking any over the counter medications for it or any supplements?

The most serious thing would be avascular necrosis, which is associated with steroid use. However, it is usually with long term therapy and or high dose over a shorter period. I have read of rare cases following a single high dose treatment with steroids. The length of time since prednisone use does not rule this out as a cause. Prednisone also is associated with osteoporosis, but is not likely with short term use. However, IBD is also associated with osteoporosis. That and your age is reason enough for the DEXA scan.

Enteropathic arthritis is another consideration, particularly if you are experiencing sacroiliiac pain that is predominant in the mornings or after sitting. This would be pain in the upper buttocks. It can be on one side, both, or alternating. Again, this may not show up on x-ray and is quite difficult to diagnose.

Then come the non-UC related things, such as bursitis, tendonitis, and arthritis that can be just wear and tear. You may need a referral to an orthopedic surgeon or physiatrist for this diagnosis. However, I saw a variety of doctors regarding my various aches and pains and they pretty much just zeroed in on the "complaint of the moment." My very excellent rheumatologist was the one who saw the various symptoms as all the same disease- enteropathic arthritis and got me on appropriate treatment. All of my x-rays were essentially negative; a few bone spurs here and there. The lumbar MRI did show ligamental inflammation. My HLA-27B gene test was negative. I was diagnosed mostly on history and symptoms.

Jan

Hi Jan,

Great to hear from you...Even though it's been a few years since I've posted - Your voice has always been steady, educational and very helpful.

Are you on Medications for the enteropathic arthritis? if so - what? What were your symptoms and have they subsided.and Have you changed your diet too? So I shouldn't give up if there isn't much on Xrays - you were diagnosed with history and symptoms with a rheumatologist you obviously trust.

My hip pain started a few years after surgery..I now have 2 sets of Xrays to compare to when/if Xray happens..Not much on the Xray a few years ago with my rheumatologist. It is in both hips intermittently..Hurts when weight baring..The pain can be horrible..Muscle relaxors with anti-inflamms seem to quell it...But the muscle relaxors can be very mood altering..after a few days.

Bone scan verses MRI? which is better? If the Xray isn't showing anything - what is the nest next step - in your opinion? (Yes-a bone scan is timely for my age).

My symptoms are worse and the length of time I recover is much longer..I am very down - and need some answers about what to do. I'm scared that I'll end up unable to walk ..as I get older.

Jan, Thank You for your valuable input.

-Karen

My symptoms were of persistent sacroiliac and low back pain and stiffness, predominantly in the morning or rest. This had been going on for more than 8 months. I also had a history of Achilles tendonitis, plantar fasciitis, epicondylitis, knee and hip pain. Those symptoms along with my history of UC were enough to confirm enteropathic arthritis. Since mine involves the spine (sacroiliiac and lumbar), sulfasalazine alone would not be effective (I was already on it for cuffitis). NSAIDs are the usual mainstay, but were not enough. I am currently on Humira injections and Mobic (NSAID). Plus, I get individual treatment for my tendinopathies. I have not altered my diet, but have added fish oil supplements.

Since your hip pain has been ongoing for some time, it is definitely time for advanced imaging. MRI will probably reveal more information and is probably more sensitive. Bone scan is cheaper but can be adequate. If you do not have other involved joints and your back is not involved, I would lean towards bursitis/tendinitis vs. avascular necrosis. For the former, you may get significant relief with a local steroid injection. No need to worry about systemic effects, as in this application, the steroid stays within the joint and works locally. Physical therapy may prove useful too, particularly when your pain is active. They can use treatments such as ultrasound and electrical stimulation to help reduce the pain.

Jan

Hi Jan,

I'm just absorbing everything - I need to hear it all. I've got a call in to my reg (new) doc- and hope to see her next week..

so I'm thinking that the MRI and treatment options all are ordered from a rheumatologist. Is that right? not the PCP or another specialist.??

Just thinking about - how much energy I should put in with this new PCP- or just have her refer me back to the rheumotologist..or someone else...

How often to you get the injections?

Thanks,
Karen

The PCP can order routine diagnostics and even MRIs, but they usually will refer to the specialist once simple x-rays are done, especially if they are negative, because that means something less than ordinary is going on. When you have a complex disorder, it's time for the specialist, either rheumatologist or orthopedic surgeon. If you do not have multiple joints bothering you, generally it is the ortho who will diagnose and treat.

Hip injections can be done periodically, say every 3-6 months, but often a single injection is enough to turn things around if it is not part of a rheumatic disease.

Jan