Hip pain/buttock pain

Hey there, has anyone else with UC been experiencing pain in their hip/buttock? Its difficult to describe, its like a sharp stabbing pain towards the core of my right buttock, making my right leg difficult to move at times. It definitely worsens throughout the night and mornings are tough, then it usually subsides through the day with some activity. I've also noticed if i rotate my right hip in a circular motion there is substantial grinding felt and at times even heard. My doc isnt quite sure what this is, is it Arthritis? Does anyone else suffer from this?

i had this for 2 months or so, it left for a month and now its back again... Can anyone please help!

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colitis 2 years

current meds:
sulfasalazine 500mg twice dailyx4
nicotine patch 21mg/day, every 2nd or 3rd day
omega 3 fish oil pills, twice daily
no dairy

current stauts:
tolerable, not quite in remission but better than usual

It sounds like it could be arthritis. I would have it looked at because you have "substantial grinding." Better safe than sorry.

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Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"

It might also be sciatic nerve issues. Real painful, deep down in there. I have had that, caused by some slightly bulging discs in my lower back. I was helped with myfascial release therapy (a type of massage) and I'm trying epidural shots to treat the discs. It's been bothering me on and off for a year, and seem to irritate it every time I try to do more activity. I'm hoping these shots will help.
But there is not grinding...

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49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 

That's what I was thinking - the sciatic nerve. I have some issues with that, it comes and goes. It's usually worse if I've been sitting too long previous to that though I have usually been active - so maybe I'm overdoing it. It's a deep pain that radiates from my buttock down the leg to my ankle. But it started out like what you are describing. The grinding, that doesn't sound good. I've heard that when you start to hear a grind in your joints that it can be a sign of osteoarthritis. This is not an AI arthritis but from overusage. I have OA in my finger - obviously I can't feel a grind or hear it, the joint is too small. But my husband has OA in his knees and boy do they ever grind! I tease him whenever he tries to sneak up behind me because I can hear him coming a mile away! lol

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Could be a SI joint dysfunction. It's actually one of the easiest things to address, for me at least. I can typically tell you if its that or a sciatic problem and give some relief to people within a couple of minutes. The grinding in the hip is probably not cause of the SI symptoms, but then it again it could be a contributing factor if its changing your gait. Few x-rays will pick up the degeneration there. Find a chiropractor.

Epidural shots won't really treat the disc, it will treat the inflammation and help kill some of the pain. I guess its kinda how we approach treating our UC.

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Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA

I also have Sacroiilitis and for me personally I can tell the difference. SI pain feels as if it is by your tailbone and spreads outward and upward from the tailbone - mine is on both sides and it is a throbbing sometimes sharp pain. Walking is a nightmare - it doesn't change my gait though - could be because I have it on both sides. The SI joint flares and then settles down. I tried epidural injections in my SI joint but it didn't work for me. It is however severely aggravated if I do alot of walking or alot of bending over.

The sciatic nerve pain usually starts from the top of my hip and shoots downward to my ankle (usually one side or the other, but I also have this on both sides just not at once) in one lightening quick dull throbbing pain. It also spreads outward to the outside of the buttock on occasion. Sometimes my toes will tingle like they've been asleep and sometimes it feels as if my feet are on fire when my Sciatic flares.

So it can pretty much anything in that regard. If your doc is not sure, maybe you should go for a MRI and if that doesn't show anything then maybe a nerve conduction test.

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My right upper SI flares sometimes, but is usually kept in pretty good check. Dull throbbing buttock pain which runs down into back of leg. Sometimes it stops right on the ishial tube (butt bone). Can't hardly walk. It's really only thing I get a problem with. I get adjusted and it stops immediately. Hard to fix myself though when its hurting. Only downside. I once tried to show my wife how to fix me and she about killed me, lol.

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Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA

Hey guys thanks for your help, it seems to be either joint or sciatic related. My GI initially thought it was a fistula, which is uncommon with UC and more prominent with Crohns, we tested for that last time with an MRI and results were negative. I met with him yesterday and he booked me to see a joint specialist to distinguish what is happening with the joint/nerves in that area. I always assumed it was bum related because when i was flaring with UC symptoms my hip/buttock pain would intensify, but just recently this hip/buttock is killing me but my UC is kinda under control? Either way hopefully the joint specialist will help solve this nagging pain.

PS im so so happy i found this forum!! ive been dealing with a lot of prob's the past two years and its so comforting to hear others with similar ailments shed some light, thanks again.

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colitis 2 years

current meds:
sulfasalazine 500mg twice dailyx4
nicotine patch 21mg/day, every 2nd or 3rd day
omega 3 fish oil pills, twice daily
no dairy

current stauts:
tolerable, not quite in remission but better than usual

MSOBO,

Hey Buckeyeinfl, I guess ill find out more after i visit with the joint specialist, still awaiting an appointment. It's quite strange really, i recall having a hip xray about 8mth-1 yr ago by my regular dr because of this ailing hip/buttock pain but the xray's were supposidly negative (this was when i was in real pain). I guess that initailly ruled out arthritis of any kind, so then my GI scheduled an MRI to check for a anal fistula (internal tear of the lining) and that as well turned out to be negative. Mind you when i had the MRI done i was in no pain what so ever. So its a bit of a mystery, hopefully when the joint specialist has a look at the MRI he can focus on the hip joint area to look for any signs of what is causing all this pain. Time will tell, ill share when i find out more from the specialist.

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colitis 2 years

current meds:
sulfasalazine 500mg twice dailyx4
nicotine patch 21mg/day, every 2nd or 3rd day
omega 3 fish oil pills, twice daily
no dairy

current stauts:
tolerable, not quite in remission but better than usual

Did you see a chiropractor yet?

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Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA

msobo,

I'm glad you're persuing this with a specialist.  You signature doesn't list Prednisone...were you ever on it?  There is alot of misinformation out there about osteonecrosis (ON) and I believe wholeheartedly that there are more people walking around with this than many people realize.  It is often misdiagnosed or looked over for many years because an MRI wasn't done to detect it in the early stages. 

I don't know if you've read any of my previous posts, but in a nutshell, here is what happened with my daughter:  Colitis spread through her with a fury...from beginning to end, 3 months on Pred and surgery for the jpouch on in a span of 4 months.  Digestively she's doing great...a year later her knee became swollen/painful with a grinding popping sound and after x-rays (whic was negative), phys therapy, and a rheumatologist who wisely suggested an MRI "just to rule out anything mechanical" discovered "bone infarcts" on the MRI.  These are areas of dead bone.  After searching for treatment, we found a specialist who suggested aggressive MRI of all joints.  At the time, only her knee and right elbow were bothering her which we thought was an extraintestinal manifestation of the UC-arthritis of some sort.  Long story short, like my signature states, it's pretty much throughout her body.  Many of the joints aren't symptomatic, so we still wouldn't know she has it if we hadn't done MRI's.  But, we've been able to get her joints operated on to hopefully halt the progression of the disease. 

I'm not saying you have it, but there are red flags in your story, ie, "..sharp stabbing pain towards the core of my right buttock...worsens throughout the night and mornings are tough...substantial grinding felt and at times even heard." 

Hello Buckey,
Im sincerely thankful for your kind/helpful post and I wish you and your poor daughter all the best, that must be so difficult, especially for a young girl to deal with. From how it sounds, she's very fortunate to have you doing all you can to help her through this terrible illness(s).

Sorry im not sure where to begin so ill just toss out a whole bunch of info. First off, what you just described scared the living hell outta me!! i did some further reading on ON and this does seem like more than a plausible diagnosis, i just hope it is not. I did take prednisone once, about a 1.5 years ago, cant remember but it was a very small dosage, 'a pulse', tapered over a few weeks if i recall, it worked like a charm but it was short lived and that was the end of that.

about my joint pain, its 2 part really. Initially, when i was struggling with bad UC symptoms(about the first 8 mths straight) I had 3 separate joint flares, hip, ankle, wrist. All visibly swelled and the area became immobile with seering pain, scared me silly but never persisted past 24 hr. Those ailments never returned.

In the past year ive been dealing with this hip/buttock pain we've been talking about. Joint wise it is just bizarre!! Today for example i can swivel my hip as if it were 100%, tiny bit of discomfort and ZERO grinding. Three days ago, grind, grind, grind, pain and trouble walking. Did your daughter ever experienced this on/off of pain/grind in her experience? I cant explain this because one day im super fit, the next day a senior citizen, and back and forth and back and forth. ???

Thx,
msobo

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colitis 2 years

current meds:
sulfasalazine 500mg twice dailyx4
nicotine patch 21mg/day, every 2nd or 3rd day
omega 3 fish oil pills, twice daily
no dairy

current stauts:
tolerable, not quite in remission but better than usual

Thank you for your encouraging words.  It has been incredibly difficult; you have no idea, but, we're learning to deal with this, she has a world sought after surgeon to care for her and I'm learning all I can about it so that I can be informed.  There is so much misinformation like I said, that's why I spend the time responding to people who are having joint issues with a history of steroid use.  That said, it is considered a rare disease and many orthos will go their entire career and not see a case nor know how to treat it properly which is why I alway suggest to people seeking treatment to find someone who specializes in this disease.  I'm going to post this link for information that might be helpful; its very comprehensive: http://emedicine.medscape.com/article/386808-overview

My intention is not to scare you, only to inform so that you'll be armed with info when you see your ortho.  There are cases of ON from low dose steroids and there are ON cases for no known cause (ideopathic).  And from your reading you know it can not only be caused by steroids such as Prednisone, but also from trauma, scuba diving, excessive alcohol use and in the case of a study on rabbits, from intramuscular injections:  http://www3.interscience.wiley.com/journal/112212938/abstract

Here is a link to a study with MS patients who received pulse treatment(s).   http://www3.interscience.wiley.com/journal/118554672/abstract?CRETRY=1&SRETRY=0  One thing to keep in mind is that some people are just more susceptible to this and there are ongoing studies to figure out why.  Some have a coagulation problem with their blood which makes them more susceptible.     

I'm still learning about it and trying to understand the pain patterns.  My daughter seems to have more pain when the weather is bad which is understandible with the drop in barametric pressure putting more force on the bones.  Osteonecrosis will eventually turn into Osteoarthritis and many arthritis patients also feel more pain in their bones when the weather is bad so it makes sense.  So, to answer your question, her pain does come and go.  She's away at school, so I'm not really tuned into the grinding or popping sounds coming from her knees and other joints.  She does get up and down out of a chair like an old woman but other times she seems ok.  It is my hope that you won't need any of this info and that your MRI comes back negative..in which case, I'd seek out a rheumatologist to see if you have Rheumatoid Arthritis.  Sometimes it takes multiple testing to confirm that through bloodwork. 

All the best to you,

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20 yo daughter w/ Pancolitis

Hi msobo,

I have symptoms very similar to yours. Diagnosed with Ulcerative Colitis in '08, then Proctitis in '09. Have been dealing with severe SI joint, hip, lower back and mid back pain on a daily basis. My Proctitis is almost cleared up, but the pain remains. It's definitely worse in the mornings, and loosens up as the day progresses. I never took steroids for UC/UP, so if you have what I'm dealing with, it's most likely not Pred. related.

Have you made any progress finding out what is causing this pain? If so, what are you doing to treat it?


Thanks a Lot,
runcycle

Runcycle and all,

I know that Dr-A suggests chiro, but what about PT, too? Physical Therapy can help to address all of the concerns: Low back vs hip vs SI vs sciatic nerve, etc. Depending on what state you live in, you can either self-refer yourself to a Physical Therapist or get a referral from your GP or ortho doc. If you are sure it is SI or low back / sciatic nerve I would recommend a McKenzie Institute Credentialed therapist. (you can look on www.mckenziemdt.org and type in your zip code to find someone)

Just a suggestion.

Jen O

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Age 34, Diagnosed with UC September 2008
Current Meds:
Prednisone 30 mgs, tapering down 10 mgs on Wednesday, then 5 mgs per week
Just started taking Apriso 4 tabs daily 6/11/2009 (SIGN UP FOR THE LOYALTY PROGRAM FROM SALIX!)
Biotin 5 mg
Vitamin D 2,000 IU per day
Calcium 1500 mg per day
Flaxseed Oil 2000 mg per day
Multivitamin
Also tried: Remicade, Asacol, Rowasa, Cantasa
Waiting for bloodwork, likely will start Imuran next week

PT could definately help if its muscular in origin. We usually get the referral from the PT though for this. They can't address it the way we can. People usually start getting relief within a week if it's gonna help.

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Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA

Thanks for the suggestion Jen O. I tried PT 2 months ago but the day after every session, I was in so much pain, I could barely walk. It isn't the good kind of pain where it's just sore muscles. My SI joints in particular become loose and extremely painful where it feels like my pelvis is separated into 3 different pieces. I'm taking care of my 6 month old daughter, so this kind of pain isn't an option for me.

There has to be a root cause of this. Simply dealing with the symptoms is just going to cause problems later on down the road. Does anyone know if there are diseases out there in which the body's immune system attacks cartilage? Maybe the same bacteria that is causing UC/Crohn's is also embedding itself in nearby cartilage and connective tissue?

If the SI joint is out that could be a root cause. If it was relieved by a treatment but tended to get irritated again, you then look at what you may be doing daily to cause the irritation.

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Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA

I have a pain like that in my butt/groin area. I buckle over when it hits me, it is very intense. It only last for a few seconds. I thought it might be related to my UC, my gastro said it was nothing. Does this sound like a sciatic nerve thing too? It does not radiate.

Thanks.

This is the best explanation I have found for what this pain is:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=19468993

I posted similar question few months ego titled Debilitating hip pain.
Since then, I went to see orthopedic doc and had lower back, pelvic and hip MRI, CT with imaging and blood work – all came back negative. Ortho doc did say that UC may be the culprit and /or SI joint may be also the issue – no way to diagnose it but cortisone shot under X-Ray and see if the pain goes away. Suggested vicodin for pain – that just makes me dizzy and helps just a little with pain. Went back to gastro, had abdomen CT, more blood work and colonoscopy. Scope showed mild UC and few polyps which he removed. My hip/buttock pain is a little better - it usually goes away in a few weeks, this time started in April and I still feel it specially in the AM. Going to see gastro again in a few days – not sure were to go from here…

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Male, 45; UC 15 years, Lexapro helped with stress and UC.

I like myofascial release therapy because it is a combination of massage, Physical Therapy and chiropractic moves (and I've had all three).

The shots helped when I had been in pain for about four months, from October to February. But I've found I'm still vulnerable to re-irritating it and don't want to get a shot every time that happens. So I'm still hoping it will resolve in time, with some stretching moves I learned from each of these practitioners and my strength training.

I think my biggest problem is not giving it enough rest. I keep pushing to do activities I want to do...then pay the price later.

I was given Oxycodone for the pain, I'm not sure if it does much for me. Aleve helps, but I took it too much started to bleed a little...didn't want to go down that road!

Good luck, it's so annoying!

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49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 

Hello. I'm new around here. But was doing some reading and came across this post. Anyway.... I've been dealing w/ SIJ dysfunction for several years now. And for the first 2 it was horrible. Gosh, I can't even begin to explain w/o going on for days! LOL.... But I did try a few things that worked fantastic. I am only about 70% better. But what a difference. I can function again.

Look up The DonTigny Method. It will explain alot of stuff. And you should try some of the self corrections that are mentioned in the exercise section.

For me it took lots of therapy. And many injections to get to where I am at today. Depending on what all is going on with you personally, you may need injections in several areas to calm things down enough to get relief. I had injections in my SIJ, piriformis, iliopsoas, L4/5 in one session. Then a repeat of SIJ and a few other trouble spots on a second round. HUGE difference.

Hope this helps you get some relief. As well as some understanding about why it can be complicated. I know from my own experience that I will never be 100%. My ligament was over stretched and held that way for too long to hold my SIJ in the correct position. But knowing how to do corrections has been a life saver.

I was having some muscle cramps for a while (when I first started Pred- which I know causes this).  But I found that eating a banana every day has really helped them go away.  If your pains are caused by low potassium like mine were, that might help you!

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DX: UC (Proctitis) January 2009 (age 24)