Worsening Hip Pain Questions

[Mallory's Mum]

Our 8, almost 9, year old daughter was diagnosed with moderate to severe Crohn's about 3 weeks ago. She had been having on and off right hip pain since fall, but it wasn't until weightloss, fever, headache, and a few other symptoms, did we finally get a diagnosis. On our our doctors originally thought all of her symptoms were Juvenille Systemic Idiopathic Arthritis. All of the bloodwork, etc were pointing toward IBD and her hip MRI & bone scan showed no arthritis.

However, in the last month or so, the right hip pain is just getting worse. It originally was just sort of off and on. She said it was at about a 2-3 on a 1-10 pain scale (10 being the worse). As these last few weeks have been progressing, the pain is getting worse and constant. She now says that it is 4.5-5.5 out of 10. She is always asking for Tylenol which doesn't seem to do anything.

We are currently on 30mg of Prednisolone daily and she has yet to have her MRE to look at the rest of the small bowel. We were told that it is in her esophogus, stomach, and TI. Haven't really been told more than that since we have yet to have a face to face with the doc since the scopes. We visit on Wednesday.

Guess I am basically looking for some ideas and or questions to make sure I ask regarding hip pain. I've done some reading on the internet (I know...don't do) and I know that there are arthritis related issues with Crohn's. Wouldn't those have shown up on the scans taken the beginning of February. I have heard of the necrosis issues but wouldn't figure it would happen so quick. I've also read about some cases of abscess and/or fistula to bursa etc causing the pain. I just wanted to make sure I know what to ask so I'm not leaving with the "follow up with the Rheumy" if there is possibly something more that could be going on.

Thanks in advance. You guys are a plethora of information.

 

[AZMOM]

Is her pain in the joint or inside the hip in her abdomen? The terminal ileum is on that side and I'm wondering if what she's calling "hip pain" might be belly pain????

My daughter was dx with JRA almost 3 yrs before the Crohn's disease. So, we've been there. If you don't think it's belly pain, is she losing motion in the hip or limping at all?

Either way, I think it's worth tracking. If I've learned nothing else, a simple calendar where you can note complaints can really help!

:heart:

J.

 

[Jennifer]

Limping is a really good indicator if its actually the hip joint. I know mine hurts a lot but I was recently told its because I have arthritis (I'm 29). Other than that I also have Crohn's in my TI and the pain never really went into my hips but it did go to my back so its could be possible that the pain is radiating to her hip (unless she's limping then its the joint more than likely as mentioned). An x-ray will show arthritis. Unfortunately I don't know how quickly it can form but maybe it was just beginning to form and maybe the radiologist looking at her scans didn't quite catch it (always a possibility). Crohn's in general does cause joint pain so it could also just be that.

 

[Mallory's Mum]

During the diagnosis period, the Rheumys mentioned that it could be "referred" pain caused by IBD. We never really got to talk much about that with the Gastro doc because, to be honest, the meeting the week before scopes, I don't think he really had IBD since she did not present with diarrhea. When her fecal Calprotectin test came back at >2500, they changed their thoughts and ordered the scopes. We did get to talk right after scopes but the hip never really got spoken for.

I was hoping the prednisolone would make it feel better but it's just worsening each day. She is yet to really be limping but I've noticed that she is sometimes not walking every other step (left foot one step, right foot next step) but instead left/right foot one step then to the next if that makes sense.

When I push on the stomach, near the hip, she cringes some. Says it feels really weird. If you rotate her hip all around, she cringes. She says it hurts to walk, sit, and lay on her right side.

 

[DustyKat]

Matt has Ileal Crohn's and his pain was always located around his navel and radiating into his lower right quadrant. He did however develop pain located more toward the hip. He also developed a limp, it wasn't always noticebale until the pain became severe at which point he found it difficult to put weight on the leg and only had slight relief by flexing his knee. Does any of this sound familiar?
If so it may indicate that she has developed the complication of a fistula or abscess or both.

At the time my son was also newly diagnosed, about 3 weeks, and his Crohn's was rated as mild to very mild. He was also on Prednisone. I have only mentioned these similarities to highlight that it can happen early on in a diagnosis and whilst on treatment.

Good luck!

Dusty. xxx

 

[Mallory's Mum]

Dusty: I will see about the knee bent on her back in the morning. I have been wondering if she has or is developing an abscess/fistula. I am so new to this so I will ask the dumb question: how can they tell if it's an abscess or fistula there? Another stupid question, but what causes this complication? She tends to be the a-typical constipated type so they were not ruling out the possibility of a stricture in the small bowel causing this. Guess that shows up on the MRE? Kay

 

[bigtruck]

Hi I would get the doc to rule out the possibility of a psoas abscess as what you describe is how it presents itself. Ryan

 

[DustyKat]

If there isn't too much inflammation present they will pick the abscess up on a scan. An MRI should pick it up although I have read radiological articles that suggest CT's are more sensitive at picking up these type of complications. If a fistula is large enough they will see that also but sometimes it will only be a micro perforation and air outside the bowel will lead them to that suspicion. My son did have the type of abscess Ryan mentioned, psoas (the name of the muscle affected), and he required a drain to be inserted, whilst this drain was in they did a sinogram, which is injecting dye through the drain whilst being scanned. It will then show if there is a connection between the abscess and the bowel. If this is the case then the drain has to stay in until the fistula heals or is surgically removed or the pus pocket will continue to reform. The biologics tend not to work very well for fistulas located in the ileum so often surgery is the only viable option.

An MRI or CT should also show if there is a stricture, these can be caused by scar tissue or it may be inflammation alone.

The various sites in the bowel that Crohn's can manifest tend to have their own type of complications. Crohn's situated in the ileum is reknowned for abscesses, fistulas and strictures and unfortunately they aren't all that uncommon.

Dusty. xxx

 

[Mallory's Mum]

Ah. We've been trying to verse ourselves in all of the additional complications of the disease and gosh, it's really scary to think about for an adult let alone a child. I have been preparing myself for the thought of something like this so we shall see what the appt has to offer on Wednesday. I also read what you mentioned DUSTY about CT being better for seeing somethings. Would she be running a constant fever with the abscess/fistula?

Hip pain was at about a 5.5-6 this morning but I managed to get her to go to school with a pillow and heating pad. Not sure how long she will last but I give her credit for trying. We haven't ever had a child with Crohn's in our district so this is new for everyone. They are very supportive but not sure if they really understand what she's really feeling. Guess that's why she has mom

I did have her lay on her back and put her knee up. She said the pain is a little less but not a ton. Maybe around a 3-4. I feel for her since sleeping is hard thanks to steroids and her hip. Guess I can see why she is napping so much.

 

[imaboveitall]

I have nothing new to add as far as medical ideas, but just wanted to say HEY and welcome, I am dealing with odd knee issue with Violet so I kind of understand. V doesn't have pain though, unless she weight bears. The unknown stuff is the WORST. I sure hope you get an answer SOON.

As far as the EIMs, yes, they are a whole other set of things to learn about. V passed a kidney stone a few weeks ago, that is an EIM. It IS overwhelming and while knowledge is necessary, I do wish I could just stop obsessing on every detail. :shifty-t:

I hope to soon read of an answer for your girl and quick resolution asap!

 

[Tesscorm]

I hope you get some answers soon! It is very hard when we don't know how to help them! My son's crohns is in his terminal ileum as well and he complained of back pain for months prior to being diagnosed. His GI now thinks that his back pain was a result of his intestinal inflammation.

Good luck and, again, I hope you'll have some answers soon!

 

[Cat-a-Tonic]

Throwing my two cents in here as nobody has mentioned this possibility yet. About a year into my IBD, my right hip started giving me pain too. I went to my GP and was (mis-)diagnosed as having mild arthritis. I was sent to physical therapy where I was given strength exercises to do. That helped somewhat but I still had some hip pain. My GP sent me to a specialist to get a second opinion, and at that point I was correctly diagnosed with bursitis (apparently they read my x-rays wrong the first time around and it wasn't arthritis after all). The exercises for bursitis are gentle stretches as opposed to strength exercises, and the stretches have made me feel so much better! I do the spinal twist daily and I very rarely have any hip pains at all nowadays. Here's a link to what the spinal twist looks like:
http://yoga.about.com/od/yogaposes/a/supspinaltwist.htm

It shouldn't hurt to try some gentle stretches like that and see if it helps her hip pain any. It might not be bursitis, but if they didn't find arthritis then it could very well be bursitis. I went from pain every day and limping at times, to feeling nearly 100% now that I've been doing the stretches regularly. If her pain is out to the side of her hip rather than being down in the joint itself, that's a sign it's probably bursitis. Some people will get a weird lump on their joint with bursitis but not all - I have no lump, even when you palpate my hip you can't feel anything out of the ordinary.

If it's not arthritis or bursitis, it might just be the illness itself or the pred. Personally, when I flare, all my bigger joints hurt and lower back too. Hips, knees, elbows, wrists, ankles all feel awful when I'm in a flare. I haven't been on pred long enough to experience this myself, but I've heard many others say that while on pred their joints hurt horribly too. But, since you've said it's just her right hip that's been bothering her, and it doesn't look like arthritis, that sounds in my layperson non-medical opinion like bursitis is a very likely suspect. Good luck, I hope she feels better soon!

 

[DustyKat]

Matts blood's went wicked crazy when we took him to the ER with his...WCC 35 and CRP about 365, but he was afebrile, no temp at all. flexing the knee won't help the pain all that much just decrease it slightly.

Prednisone can also mask symptoms so she may not produce a fever.

Any chance of having your GP run some bloods? Might give a clue, or rule out, what may be happening.

Dusty. xxx

 

[Mountaingem]

Just want to add that prednisolone can cause damage to the hip joint on its own as a side effect. I have no experience in how this is with little kids but a close friend of mine needs a hip replacement due to prolonged steroid use. Her doc told her sometimes the onset of this side effect is fast;might be worth looking into.

Hope your daughter finds relief soon-she's a tough cookie!

 

[archie]

Hi when I had an abscess in my TI I always felt the pain into my right hip and mid thigh, it was referred pain and quite typical of an abscess as everyone else has suggested. She needs a CT scan to have a look, is the pain constant or intermittent is there a pattern or any aggravating / easing factors? Does she Have night pain or any stiffness in the hip joint? Has she had a recent growth spurt? Some of these answers might help decide between actual joint pathology or referred pain from IBD. Whatever the cause I hope your daughter gets well very soon. My guess is if it was a hip problem the steroids would've eased the pain a bit so I think it's prob caused by the inflammation in the bowel.

 

[Johnnysmom]

My son had joint pain while on Prednisone. He had it in his hip, ankles and knees. Now that he is done with the Pred his knees are the only things still severely affected. He goes to Physical therapy 2x per week and does stretches daily. He literally can't jump, run, and at it's worst needed help getting off the toilet it hurt so bad and he could not bend his knees without extreme pain. We went to an orthopedic and he said prednisone weakens the ligaments and muscles. Then the child starts to grow, and bone grows before ligaments and this put extreme stress on his knees.
Sounds like you are getting the other possibilities checked out. I can empathize it is a long journey but I hope your daughter is feeling better soon.

((((hus))))) Tiffany

 

[Mallory's Mum]

You guys are such a wealth of information and comfort. Mommy instinct tells me that this is no arthritis. She has had the pain since before she finally got diagnosed and it used to come and go. They did MRI & xray about month ago and it did not show any arthritis. Since diagnosis, it has slowly gotten worse and constant. I have read that prednisone can cause bone issues but I guess I was thinking that would take a while. We've only been on the prednisolone for 2+ weeks. I'm thinking that the steroids would help with the joint pain like it does mine if it were arthritis. Phew. So I'm getting kinda nervous and scared as I was hoping these type of issues would be a long time away. But, one day at a time and I'm hoping that they take these differences serious. We are at Cincinnati Children's which is a great IBD hospital so I'm sure we are in great hands. They had me make a Rheumy appt (which I love the fellow so I'm ok with that) but my gastro is first in the morning.

PS...the steriods are surely working on her appetite. My little dumpster is on her 3rd box of Rice Chex in 6 days. I just bought one last night at 8 pm and there is about 1.5 bowls left. No one told me that I needed to take stock in Kroger with diagnosis.