Tailbone pain?

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Charleigh

Charleigh

Joined
Nov 16, 2012
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Southern USA
DS is having terrible pain in his tailbone area. He can't remember falling, but he was working on a ladder a few days ago and said he was sitting on it funny. I am assuming it all comes down to a bruise from how he was on the ladder, but I don't want to overlook anything. Should I be concerned? He has an appt with his GI in a week so if he still hurts I can mention it then.
 
I've had pain in that area from an abscess and fistula. Could it be from inflammation?

I hope its nothing.
 
I agree with MLP, it could be nothing but it also could be Juvenile Spondyloarthritis (JSpA). I would try to see a pediatric rheumatologist as soon as you can.

Does he have any other joint pain? Joints that are most often affected are knees, heels, ankles but really any joint can be affected. Sacroiliac joint pain (lower back pain) often follows after other joints.

Pain that becomes worse with inactivity - sitting, sleeping etc. and better with movement is a characteristic of inflammatory arthritis.
 
Maya142 said:
I agree with MLP, it could be nothing but it also could be Juvenile Spondyloarthritis (JSpA). I would try to see a pediatric rheumatologist as soon as you can.

Does he have any other joint pain? Joints that are most often affected are knees, heels, ankles but really any joint can be affected. Sacroiliac joint pain (lower back pain) often follows after other joints.

Pain that becomes worse with inactivity - sitting, sleeping etc. and better with movement is a characteristic of inflammatory arthritis.
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He hasn't had any joint pain recently. Before diagnosis, he had a good bit of pain in his knees and hips. In fact, when I addressed my concerns with his pediatrician and he received his labs with such a high c-rp and SED rate, he initially made appointments with a ped-GI and a ped-rheumo, but the GI saw him in a month and the rheumo was a 9 month wait. So when the GI diagnosed him with Crohn's, he said I could cancel the rheumo appoint.
How long should we wait before seeing a doctor? Seeing a rheumo will be a long wait. I did call and move his GI appointment up to Wednesday morning, rather than next week. He has been on enteral nutrition for 6 weeks and his bowel symptoms are great so I will be utterly discouraged if his inflammatory numbers are high :(
 
Ok so on one site I read this

"In some children, JEA may begin before a diagnosis of colitis is made. The arthritis may precede the bowel problems by years"

Ummm....this is E to a "t", but can't crohn's do that as well? He began having joint pain years before any bowel problems manifested.

It also said this....
"In some children, the spine arthritis may occur at times when the colitis is inactive."

Would this be the same for crohn's? If so, could the enteral nutrition putting him in remission actually cause the arthritis to flare?
 
Yes, the arthritis can flare independently of Crohn's or Ulcerative Colitis. It can manifest before the IBD (M was diagnosed with JSpA 3 years before she was diagnosed with IBD).

CCFA has a good explanation: http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

I would ask the GI if he can refer you to a pediatric rheumatologist. Perhaps he can help you get in faster.

I'm not sure about enteral nutrition. My daughter has supplemental EN through an NG tube but it hasn't made any difference to her arthritis.

What meds is he on? Some meds used for IBD work for arthritis - like Methotrexate or the biologics.
 
Maya142 said:
I would ask the GI if he can refer you to a pediatric rheumatologist. Perhaps he can help you get in faster.

What meds is he on? Some meds used for IBD work for arthritis - like Methotrexate or the biologics.
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He is just on En. He will see the GI on Wednesday and I will talk to him then about a referral, unless the pain has subsided.

Will the arthritis make his inflammatory numbers high? Are there any lab markers we can ask to test?

Thanks
 
Arthritis can make ESR and CRP high, but for some kids it does not (just like for IBD). My daughter always has normal ESR/CRP so we don't worry about them too much anymore.

I wouldn't worry too much yet - you're not sure he even has arthritis. I would just try to get in to see a rheumatologist as soon as possible if he keeps complaining. And tell him it's important to tell you if joints hurt. We went years calling my daughter's knee pain a sport injury and now she has a very damaged knee from arthritis...
 
My son experienced tail bone pain some time ago and the rheumy said it was part of his JSpA. His joint pain started before his CD, as well but in the knees and ankles. Due to lack of concern by our first rheumy and me not really understanding the difference between CD associatied joint pain and SpA, it took some time before I got him to a rheumatologist that listened and dx'ed right away.
 
Clash said:
My son experienced tail bone pain some time ago and the rheumy said it was part of his JSpA. His joint pain started before his CD, as well but in the knees and ankles. Due to lack of concern by our first rheumy and me not really understanding the difference between CD associatied joint pain and SpA, it took some time before I got him to a rheumatologist that listened and dx'ed right away.[/

We sound similar - we never pursued a rheumy dr since we assumed his knee and hip pain were just crohns inflammation. :/. He's getting worse. He's had a rough day! He says he feels sick/feverish but he doesn't have a temp? I'm really thinking abscess or arthritis.
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Last year I thought my son was having a CD flare, joint pain has always been a precursor as well as episcleritis. This time there seemed to be no CD issues except that he wasn't going to the restroom, no episcleritis and severe joint pain. He was hospitalized, we discovered a pain med he'd been px'ed for the joint pain was causing him not to have bms. Looking back the GI and rheumy feel that he was probably having an arthritis flare independent of his CD. His CD may have been simmering but that severe joint pain was probably the JSpA.

I would recommend whether the pain remains or wanes in his joints that you see a rheumatologist that is familiar with CD and the EIMs and co dx that can come along with it. It was a year later that the rheumy dx'ed C and to this day that really bothers me.

If I had left it to C, we may have not seen the rheumy when we did. He, I assume, had dealt with the joint pain so long that it was his norm. Only when his lower back pain persisted to the point of bed ridden did he relent and even after the dx he still seems to put joint pain down to regular activities or pulled muscles before saying it is his JSpA.

I hope your son's pain eases soon.
 
DS has juvenile spondylarthritis .
His arthritis is in his hands .
It runs independant of his crohn's activity
He has pain in his lower back , hips , groin, heels and knees as well as hands .

Meds for crohn's can help JSPA but some like my son need extra meds just for the arthritis .
 
So he woke up this morning with terrible pain in his left hip too. Ugh! Is JSPA something his Ped. GI should be very aware of or am I going to have to pursue this all by myself?
 
True hip pain (coming from the hip joint) is usually pain in the groin. Pain anywhere else (lower back, one the side of leg) is more likely to be SI joint pain. Either way, I would see a rheumatologist as soon as possible! I'm sorry he's hurting, sometimes using heat (M loves her heating pad) or ice helps. So do hot showers.

Our ped GI is quite familiar with JSpA but I'm sure there are some that aren't. At the very least he/she should be able to refer you to a good pediatric rheumatologist since joint issues are pretty common with Crohn's.
 
Maya142 said:
True hip pain (coming from the hip joint) is usually pain in the groin. Pain anywhere else (lower back, one the side of leg) is more likely to be SI joint pain. Either way, I would see a rheumatologist as soon as possible! I'm sorry he's hurting, sometimes using heat (M loves her heating pad) or ice helps. So do hot showers.

Our ped GI is quite familiar with JSpA but I'm sure there are some that aren't. At the very least he/she should be able to refer you to a good pediatric rheumatologist since joint issues are pretty common with Crohn's.
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Sorry, I didn't have coffee this morning...what is SI Joint pain? I'm sure when you tell me I'll feel really dumb :/
 
No, sorry, I've spent much too much time in the rheumatology world :)!
I meant sacroiliac joint pain. Your SI joints are where your spine meets the pelvis. SI joint pain can be felt as lower back pain, butt pain, thigh pain etc.
 
Ours is familiar with it too. In fact, I frequently remind him that he laughed the first time I asked him if C could have anklyosing spondylitis. The rheumatologist said that term isn't used when it is related to IBD but the result is the same, semantics to me.

Once C was dx'ed his ped GI had been great about approaching both dx with common meds since the meds overlap and has pushed us to have C's HLA-B27 genetic test as well as keeping him in swimming and/or therapy.

This works well since the wait times on rheumatologist are horrendous and so GI contacts rheumatologist when meds need changing, further therapy etc
 
Clash said:
Ours is familiar with it too. In fact, I frequently remind him that he laughed the first time I asked him if C could have anklyosing spondylitis. The rheumatologist said that term isn't used when it is related to IBD but the result is the same, semantics to me.

Once C was dx'ed his ped GI had been great about approaching both dx with common meds since the meds overlap and has pushed us to have C's HLA-B27 genetic test as well as keeping him in swimming and/or therapy.

This works well since the wait times on rheumatologist are horrendous and so GI contacts rheumatologist when meds need changing, further therapy etc
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Is there a different name for it when it relates to IBD? A different name I should use when I talk to the GI tomorrow?
Thanks for all of your help :)
 
In kids it is usually called Juvenile spondyloarthritis/spondyloarthropathy. Juvenile Ankylosing Spondylitis exists but it is much rarer.
It could also be called Enteropathic Arthritis if associated with IBD.
 
I called and made a rheumo appt myself. And I am glad I did - they had a cancellation and can see him in 2 weeks. A far cry better than 9 months!
 
Yeah, what Maya142, said. I understand that C's dx isn't AS but the rheumatologist said he will need the same type of meds that treat AS because his dx can lead to joint fusion. C does not have joint fusion now and has good range of motion. He will have yearly MRIs to check on progression of disease.

The rheumatologist labled his Juvenile spondylarthropathy related to IBD(or may co-dx CD, can't remember).

The SI joints were what the rheumatologist was most concerned with at our first visit but that was also where his most severe pain was during exam so not sure if it was relevant.
 
So glad you got in so quickly.
DS started seeing a Rheumo
2.5 years ago
At first despite pain he was only dx with arthralgia and myalgia associated with Ibd.
His crohn's was not under control at the time.
However this past January his hands issues got worse .
This past June he was officially dx with Juvenile spondylarthritis associated with Ibd in his hands. The Rheumo is closely monitoring his hips and lower back since AS is very common in adults who started out with JSpA.

Hope they get to the bottom of it quickly
 
So glad you got in so quickly! Keep us updated, will be thinking of you.
 
Saw the GI. He says DS is looking really good. He has jumped incredibly in weight and height and has hit puberty and the GI is super, duper happy. The EN is working wonders for him. He doesn't feel that it is Crohn's related. He also dismissed the arthritis idea. He wants him to see our primary and get his thoughts. I am not so quick to dismiss the arthritis though. I will talk to our pediatrician this afternoon when we see him. He is the one who originally scheduled the rheumo appt so maybe he will be more on board with that.
The reason he dismissed the arthritis is that he says it is usually worse when Crohn's is worse and in remission when Crohn's is and if the Crohn's is getting better then the arthritis shouldn't be flaring now :yrolleyes:
 
Not always - our Gi was the same way at first since no one could see the pain.
And most cases of arthritis correspond to Gi flares .
However even the Gi now agrees his arthritis is a lot worse than his crohn's.
Of course it helps everyone can see the joint issues.
I would still keep the Rheumo appt
Best case scenerio they tell you don't have to come back ;)
Peds handle general stuff think horses not zebras
Rheumo handle zebras ( a whole lot of gray stuff).
So if your kiddo is rare like mine and maya then you really need a Rheumo sooner rather than later .
Plus waiting another 9 months if you cancel ...
 
Absolutely not true. Arthritis can be independent on Crohn's. My daughter's certainly is. This January she had almost clean scopes (some mild inflammation in her terminal ileum) but her MRI's of her hips, knee and SI joints showed a LOT of inflammation.

I have no idea why GIs perpetuate this myth. You're the third person I've heard of who has heard this from their GI!

So glad the EN is keeping the Crohn's under control.
 
My dd has JIA and it flares whenever it feels like it.:ymad:
Sadly the JIA is more painful most of the time then her IBD.

Is he any better today?
 
Farmwife said:
My dd has JIA and it flares whenever it feels like it.:ymad:
Sadly the JIA is more painful most of the time then her IBD.

Is he any better today?
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The same, except now his left knee hurts too.

Strangely enough, my child's joint pain has almost been non-existent since his GI issues began. His joint pain was bad before, but he he has rarely mentioned pain since he started having bowel problems. Could he be such an odd-duck that one flares when the other settles? ugh
 
Actually M seems to do that... I can't decide if it's good or bad!
I hope the rheumatologist is helpful. If any of E's joints look visibly swollen, take a picture.
 
It isn't that bit is odd, it justbd depends on what he is dealing with some joint issues that are EIMs(extra intestinal manifestations) of CD run concurrent with active CD while some run independent of active CD.

C has juvenile spondylarthropathy and it runs independent of active CD. It doesn't mean that is always the case some kids also have joint pain during flares. C does too but it is generally joints other than his lower back.

There is a great article explaining the EIMs of CD and how they run

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127025/

If you read through this is will give you a better understanding.
 
Ped thinks he's just bruised his coccyx somehow? He wants to try a few days of anti-inflammatory pain meds. We will do x-rays if the pain is still there in a few days.
 
Xray won't show SI inflammation or arthritis .
Anti inflammtory can cause crohn's to flare.
Still suggest keeping Rheumo appt.
 
Be careful with NSAIDs (like Advil, Naproxen) because as MLP said they can make Crohn's worse. You might want to check with your GI whether it's ok for him to take them.

A response to NSAIDs doesn't mean it's not arthritis since they are anti-inflammatory. My daughter takes an NSAID daily (Mobic) because her arthritis is so bad that both her GI and rheumatologist agree that it's necessary.

Since he has had joint pain for a while, I would definitely keep your appointment with the rheumatologist.
 
Maya142 said:
Be careful with NSAIDs (like Advil, Naproxen) because as MLP said they can make Crohn's worse. You might want to check with your GI whether it's ok for him to take them.

A response to NSAIDs doesn't mean it's not arthritis since they are anti-inflammatory. My daughter takes an NSAID daily (Mobic) because her arthritis is so bad that both her GI and rheumatologist agree that it's necessary.

Since he has had joint pain for a while, I would definitely keep your appointment with the rheumatologist.
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Thanks. Mobic is what he has prescribed. Is that ok?
 
Definitely check with his GI. M tolerates it well and her GI is ok with it, but it could really cause problems.
 
DS is fine until the mobi wears off and then the pain comes back. Also, we were playing tag in the yard yesterday and his knee is still painful, swollen, and slightly warm. No injury, just his typical pains after he does something too physical :( The GI and the ped. say we do not need to see the rheumo. Since our referral is so old, the nurse said I need to have them send the notes from the visit, but the notes will not suggest that he needs to be seen. I'm just not sure what to do???
 
The ped wrote it off as bruising of the tailbone since there is a specific spot in that area that hurts. If it seems to be that specific spot then it can't be arthritis, right?
 
Tell the GI that his knee is swollen, painful and warm (that equals inflammation) -- and that you do not think he injured it and want to see a rheumatologist.
Usually they'll refer you to get to you to stop bothering them ;).
 
Not sure about the tailbone, but I would definitely see a rheumatologist anyway. Just in case.
 
Yep wording is key .
Hope you get in soon.
Thankfully we didn't need a referral or DS still would not have even seen a gi yet.

Old ped thought he was just a skinny kid and I was making too much out of it .
Good luck
 
my little penguin said:
Yep wording is key .
Hope you get in soon.
Thankfully we didn't need a referral or DS still would not have even seen a gi yet.

Old ped thought he was just a skinny kid and I was making too much out of it .
Good luck
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You know, I don't think we need a referral for insurance purposes? I just think they want one so she told me to send notes. I guess I could just skip it and see if they notice. :eek:
 
Charleigh. My son started with coccyx pain 2 1/2 years ago then it progress to back and neck pain. Same thing with Doctors here... bruised coccyx, too skinny, lazy boy etc, etc. I agree with everybody else, see a rheumy. Good luck.
 
So this is where we are now....

Ped. wanted to try NSAIDs first, rather than rushing off to the rheumo. Rheumo wanted notes from ped before seeing him. Ped gave me an xray order and told me to have x-rays completed if he wasn't better in a few days. Since DS was still in pain, I took him on Friday for x-rays. Heard from ped. today and he said that the x-rays show inflammation. He wants DS to see the rheumo. He is sending the referral. Thankfully I didn't cancel my first appointment, instead I simply rescheduled. Now I am nervous. I don't need another diagnosis to deal with. I am over my head already. How in the world do ya'll do it? :eek:
 
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We saw the rheumo on Tuesday. He doesn't think DS has arthritis. He sees a limited mobility in the spine in compared to the norm but he says it isn't enough to diagnose. He did say we established a baseline to work from if ds continues to be in pain. Now ds woke up this morning and his neck is killing him, in addition to the tailbone and lower back pain. What else could be going on? He was in tears this morning with neck pain. What about a chiropractor? I don't normally go that route but could it be good?
 
What does he think is the problem then? Did he refer your son to a physical therapist?

Limited mobility in the spine is a characteristic of JSpA. Even if he can't diagnose your son just yet, he should still follow him carefully given all his symptoms.

Did the doc test his ESR and CRP and to see if he's HLA B27+? I would ask for MRI of his most painful joint, (lower back?) - if it shows inflammation then he can be diagnosed.

If he does have JSpA a chiropractor is definitely not a good idea.
 
My kiddo has neck pain as well
Agree with the flop lowing every two to three months to establish a pattern for dx.
Did they give him exercises to help in the mean time as well as non medicine treatments to use heat wax warm baths etc...
 
Maya142 said:
What does he think is the problem then? Did he refer your son to a physical therapist?

Limited mobility in the spine is a characteristic of JSpA. Even if he can't diagnose your son just yet, he should still follow him carefully given all his symptoms.

Did the doc test his ESR and CRP and to see if he's HLA B27+? I would ask for MRI of his most painful joint, (lower back?) - if it shows inflammation then he can be diagnosed.

If he does have JSpA a chiropractor is definitely not a good idea.
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He gave no solution. He didn't even plan a follow up. He did say I could come back in the future if problems continued. He was very nice and very thorough. He doesn't really love the HLA B27 test. He doesn't think it tells very much. Our ped was supposed to send the xray and somehow it never made it to the rheumo office so he didn't get to look at the xrays. He was going to look at them and contact me if the xrays made him think any differently. I haven't heard from his office. I called today and left a message to make sure they did receive the xray and to hopefully get his thoughts on it. He didn't pull labs because we had just had them pulled fro the GI.
His main premise for not pursuing diagnosis is that ds doesn't seem to have pain in the actual sarc. joints. The pain is in his lower back and tailbone. He did say it may just be too early in the disease to diagnose. I'm confused and a little frustrated.
 
my little penguin said:
My kiddo has neck pain as well
Agree with the flop lowing every two to three months to establish a pattern for dx.
Did they give him exercises to help in the mean time as well as non medicine treatments to use heat wax warm baths etc...
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No, all he did was suggest celebrex in lieu of mobic. But he didn't actually give me a prescription for it which was weird? I guess he wants me to get it from the ped.
 
If the pain continues, any chance you could get a second opinion? I know ped rheumatologists are extremely hard to find but you really need a good once that has a lot of experience with JSpA.

SI joint pain can be felt in the lower back. However, it's possible his SI joints weren't tender but sometimes sacroilitis can be asymptomatic: http://www.ped-rheum.com/content/12/1/25
 
Registry data from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) demonstrated that 28 % of children had sacroiliac inflammation at diagnosis
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Only 28%!

The prevalence of early or silent disease was demonstrated in a study of 143 children diagnosed with spondyloarthropathy [24•]. Fifty three (37 %) of the children had sacroiliitis on physical exam or imaging. Eleven of these 53 patients (21 %) had silent disease with no back pain, stiffness, or abnormal exam reported. Inflammation was seen on MRI in 7, in plain radiographs in 8, and on both methods of imaging in 4
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If I didn't know better I'd swear you saw the same rheumatologist we did the first time around! His remarks were so similar.

I would also suggest a second opinion or further investigation. The second rheumatologist was extremely more knowledgeable and dx'edat the first visit. I hate that we wasted time with the first one and he went through bouts of debilitating pain scoffed off to nothing.
 
Clash said:
If I didn't know better I'd swear you saw the same rheumatologist we did the first time around! His remarks were so similar.

I would also suggest a second opinion or further investigation. The second rheumatologist was extremely more knowledgeable and dx'edat the first visit. I hate that we wasted time with the first one and he went through bouts of debilitating pain scoffed off to nothing.
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He wasn't in NC, was he? Where is your current doctor? Certain areas of GA are not out of reach for me :biggrin:
 
Maya142 said:
Only 28%!
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Then why was that his hang up??? He is a highly rated doctor so I just don't get it!?!?! What a frustrating experience.

All I can hope is that if ds does indeed have some sort of arthritic condition, it will be clear to the doctor when he actually looks at the x-ray.
 
That statistic was a from a fairly recent article I was reading... but in kids it's quite widely known that peripheral joints are usually affected before the SI joints. Both my daughters had knee/ankle pain before for years before their SI joints began hurting (we thought the pain was from overuse - they were both soccer players).
 
X-rays, early in the disease, tend to be negative since inflammation does not show on x-ray, only damage caused by inflammation does. MRIs are now used much more frequently early in the disease.
 
The original rheumatologist was in Atlanta. Since C was close to 18 we chose for our second opinion a rheumatologist that wasn't peds.

C did not have pain is his SI joints when he went to first rheumatologist, it was lower back pain he complained of and it was constantly. He also had intermittent knee pain and sometimes ankle pain. Right before the first appointment he also was complaining of neck pain.

The knee pain tended to come in flares sometimes concurrently with CD flares sometimes independent of them. The back pain was constant.
 
Charleigh. So sorry you are going thru this. I am very interested in what you do and what comes out of it. We had the same experience with the Doctors as you guys. It has been two years and a half and still no answers. Celebrex works for my son for coccyx and neck pain but not for his back, he takes other meds too. HLB test is a good idea. If it is positive it will give a faster DX. I really hope you find answers soon.
 

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