Tail Bone pain

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malorymug

malorymug

Joined
May 8, 2014
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DS has had nearly constant tail bone pain for two weeks and prior to this episode, on and off for the last year. I have been attributing it to EIM arthritis but now I'm wondering if it is a sign of active bowel inflammation.

Last time I mentioned it to the GI was about 9 months ago and she was leaning towards a rheumatologist visit but then things got better. This is the worse he has had it. Tylenol drops the pain level but he still isn't great. Heat helps but not always practical.
 
ermagerd! I just searched tailbone pain. Nevermind. I don't want to know. Lemme stay with my head in the sand a little longer.
 
I would say it's definitely time to see a rheumatologist. Typically, axial (spinal) inflammation is independent of bowel activity.

My girls had tail bone pain when they were diagnosed and have had it on and off many times over the years. We use heat too, but it certainly isn't something you can do all the time. They also use thermacare wraps, which are thin and not very noticeable. They use them more for lumbar spine or SI joint pain, but maybe if he pulled it low enough, it would work for tail bone pain?

Morning stiffness and pain that gets worse with inactivity (sitting through a movie, for example) are some signs of inflammatory arthritis.
 
We just met with a rheumo and he said that spinal pain especially needs to be evaluated. I would ask for a referral.
 
Do you send your kids to school with a temp of 101 that you think might be tail bone pain related? I don't think he is sick...
 
Have you called the GI and reported the fever yet?
I would call and report, it might help you get a rheumatologist appointment faster.
Grace has JIA and her fevers stay between 99.0-100.1 but never above.
If it went higher I would report it for Grace.
 
Appointment with GI is tomorrow at 11. Hoping to get the first 2 classes before the appointment, but school policy is fever free for 24 hours. But maybe this is moot because pain is enough so he won't learn.
 
Yeah - if it's 100.4 we keep her home and call her docs. If it's that high, I'd be worried about an infection or a virus.

Typically low-grade fever is under 100.4.

Sending hugs - poor kiddo :(. Would he be open to one of those donut cushions for tailbone pain? There are some that have covers so you can't see the hole and they look like regular cushions. I know my kiddo would definitely not have taken one to school though!

Hope you get a referral from the GI and an appt. with the rheumatologist soon.
 
I second what the others said. Any fever over 100.4 needs to be reported to the GI Doctor.
I would give them a call even if he has an appt tomorrow.
 
Appointment went well. With the fever, elevated bloodwork and constant pain she's concerned about active inflammation especially because of past fistulas. Colonoscopy and EGD scheduled for Thursday and MRE on Monday.

She was in such a rush to schedule that I didn't get to ask about rheumo referral. I guess we'll check GI first.

Other than Tylenol and heatpads, what else can help this pain?
 
NSAIDs could help but most kids with Crohn's are not allowed to take them because they're so hard on the gut. My daughter is allowed to take them but only because her AS is so much worse than her Crohn's.

You'd also have to see a rheumatologist to figure out if it's arthritis and then they'd prescribe an NSAID if it is ok with his GI. Another option is Voltaren gel - since it's a cream less is absorbed systemically so it's better for the gut.

Other than that, they could give him Tramadol, which is a weak opioid, but again, he'd probably have to be dxed with arthritis before they'd give that. Steroids might help if he is dxed with arthritis.

Other than that - heat and ice. Have you tried a TENS unit? That might help.
 
TENS is a good idea! I just need something to get him through the next few days until we decide what's going on.
 
Do you have a TENS unit? You can actually get them online (we got ours through pain management though).

You could also try Lidoderm patches. We get them from pain management or rheumatology usually, but have also gotten them from our pediatrician. They kind of numb the area for a little while.

Glad scopes are so soon - hope you can get to the bottom of this (see my bad pun?! ;) ).
If you see the GI on Thursday, you could ask for a rheumatology referral then. It's better to do it ASAP because pediatric rheumatologists tend to be hard to get appts. with quickly. Sometimes, as a new patient, you have to wait months!
 
Temp is up to 102.1. This is day 7 of normal in the morning and elevated at night. This is the highest it has been. I called the GI on call, he wasn't impressed. I hope they don't cancel the EGD/Colonoscopy we have scheduled in the morning.
 
Oh I hope they aren't canceled! Good luck! Will be thinking of you tomorrow.
 
EGD/Colonoscopy went as scheduled and was unremarkable. He still has inflammation in his stomach and colon, but it is less, and the duodenum looked clear (yay!). Biopsies results in 10 days.

Doctor wants to increase Remicade dose and frequency. But he gave me nothing do to solve the pain and fevers in the short term (ugh!).
 
Glad you're done with the colonoscopy. Sorry to hear that there's still inflammation, but it's good that it's less than before. MRE is next week, right? When is your son's next Remicade infusion? (Has the doctor decided on the new dose and frequency yet?)

I don't have any good advice about what to do for the pain in the meantime. My daughter got a lot of relief from GI pain using EEN, but she's never had very much joint pain. Hope that your son gets some relief soon.
 
Do you mean the belly pain or the tail bone pain? If it's his tail bone, I'd call back and ask for your GI to refer you to a rheumatologist. Low grade fevers can be a part of JSpA, though his seemed a bit high for that.
 
We played phone tags with several different providers at our GI clinic on Friday, trying to get remicade on Saturday, but failed because of insurance. Hoping we can double the dose and increase the frequency starting on Monday.

Someone tell me that remicade will help this pain and fever. He is absolutely miserable tonight. TENS did nothing for his pain.

Sometimes the weekend feels so lonely, like a desert island.
 
malorymug said:
Sometimes the weekend feels so lonely, like a desert island.
Click to expand...

Yes, I hate the weekends when I have a sick kid! I really hope that you get approval for Remicade on Monday, and that your son feels better after the infusion.
 
Poor kiddo - I hope he feels better soon. We found heat packs best for belly pain, but if it's really bad, then nothing seems to work.

Weekends are awful - you're just waiting for that call on Monday.

Sending hugs :ghug:.
 
If you need questions answered by a GI directly, the time to call is on the weekend. They are more likely to call you back and discuss the issue themselves then.
 
M likes ice for joint pain. Sometimes ice and heat work well if you alternate them.

If it is spinal pain (joint pain and not a fistula), then he really needs to be seeing a rheumatologist. If he has something like JSpA, they need to make sure it is not progressing and his meds are working. It may or may not respond to the same meds that are being used for his IBD.

They can also give you pain management ideas, besides a TENS unit. Tramadol helps my girls a lot.
 
Hope the increase in Remicade helps. I don't like weekends either when they're sick. They should really MRI his lower back if the Remi doesn't help
 
Have they done a CBC and blood cultures? I'm glad he has an MRE tomorrow, when J's Crohn's is flaring, her joints flare too. Since he gets fistulas, I think about abscesses. Does he have abdominal pain too? I hope his temp was better last night.
 
Two weeks worth of tests: EGD/Colonoscopy, MRE and MRI of spine and pelvis, remicade antibodies.

Scopes looked better.

MRE shows extensive inflammation, 3-5 small abscesses, multiple fistula from upper anus down (??). Now added perianal disease to his list.

We never even got to talk about the skeleton system.

Based on his clinical manifestations we are trying oral antibiotics (flagyl and cipro) and hoping that will work. Otherwise we are to go to the hospital if he spikes a fever or has severe pain. Options 2 and 3 include IV antibiotics and surgery. How did we get here so fast? Why have we been rushed to the front of the line for the infectious disease doctor?

So I guess my question of whether tail bone pain could be a sign of active inflammation is now answered. Yes, yes it can be a sign.

How long does it take to get prometheus remicade antibody test back?
 
Yikes! What an awful situation. I'm so glad your GI did all that testing. Is it possible the tailbone pain was from the fistulas?

Really hope the oral antibiotics work quickly.

I think it took two weeks for us to Remicade antibody test back from Prometheus. But it was a while ago, so I'm not sure.

Sending hugs - hope he feels better soon.
 
So sorry to hear this. I really hope the antibiotics work well and quickly for him. I think it took us 7-10 days to get the results of the levels/antibodies test.
:ghug:
 
Really sorry to hear that. Thinking back, my son started with groin pain before his abscess and fistula appeared. We did a month of Flagyl and cipro which got rid of some of the infection but did end up having surgery and staying on the Flagyl for about 4 months. Hope things get better on the antibiotics
 
Monday we saw the GI doc and infectious disease doc. They were frustrated that we finished the Remicade infusion just as they got the MRE results showing abscesses. Remicade shouldn't be given until the infection is cleared up.

Because there is no way to see if the infection is cleared up, they plan on doing an MRE every 2 weeks until cleared. That sounds like a lot and quite overwhelming. And Cipro and Flagyl until the infection is cleared up, might be months.

Biopsies are back and are almost identical to 18 months ago. Granulomas, lymphocytes, and other big words from esophagus to colon. MRI shows no skeletal inflammation in spine or pelvis.

So that's where we are. He's had no fever and no tail bone pain since remicade. He was perky for the first few days after remicade (steroids maybe), but now he is very lethargic and his stomach hurts (antibiotics maybe). I have a call into GI.
 
Thanks for the hugs. I'm unclear if we are off remicade or not, I guess it depends how quickly the infections clear up.
 
Are they putting him on EEN to keep the crohns at bay while the infection clears and he holds off on remicade ?
I know when Ds had a mastoiditis infection that lasted more than a few weeks the Gi added EEN to keep his crohns in check while we held humira.
Didn't help his arthritis but.....
 
There was no talk about EEN. They did have us meet with a nutritionist. It was ridiculous. She asked him what kinds of food he eats and talked to him about increasing his calories. Uh, duh! This child is in pain and doesn't eat when food hurts.

I really need someone to sell EEN to him. I would prefer it wasn't me.
 
Honestly if your try to sell EEN as food not going to work
It is a medicine that is ordered by the doc to treat his crohn just like remicade
When you equate it to food - then the kid thinks it's like dinner or a snack and they have choice to not take it .
Ds was not given the option of not doing it
It was either drink it or ng tube those were his choice of how it got in.
Does your child get to chose to take remicade or wear a seat belt etc....
I think that might be part of the confusion.
Ds Gi told him this is what his body needed and it would make him feel better with added benefit of letting him grow /gain weight.

Ds was curled in a ball a mess at that point from abx and no humira so he decided that was a good medicine to try.
Again medicine not food

Good luck
 
Btw I have a 14 yr old who has medicine he does not want to take
But medicine from doctors are not optional
I let him grumble about other things /choices instead
 
One last trick
If said child is balking at taking any med ( EEN pills etc...)
I tell them if they know better than they have to call the doctor right now and explain why they know more than the doc ..
The kids tend to take the meds after that
EEN took three days of tears with my kiddo
Granted he was 7 when we started it the first time so he didn't think he could say no .
He is 12 now.
Once EEN stopped he did not stop supplementing so switching back to EEN each time was not as traumatic .
He did get money or rewards at the end of each week the first time.
Only a few extra shopping trips the second time
Nothing now that he is 80/90 formula due to GP
 
Ugh! The remicade anitibodies test came back. No Remicade detected and lots of antibodies. I guess this is why the fistulas and abscesses showed up.

Doc wants to double remicade to 10mg/kg and shorten the cycle to 4 weeks. Not sure how that works with the active infection. More questions for the doc and more reason to push EEN.
 
UGH! So sorry to hear this. If the antibodies are high it isn't likely he will last much longer on Remicade.

Did you say he is on steroids? If so, then that should be attacking the inflammation and less of a need for EEN. That said, we also presented EEN to our girls as a medical choice. You can do EEN or prednisone. The first few days were hard but EEN works so well for my girls that when they are feeling better there is little push back.

So sorry you are facing all of this! The system won't let me insert the HUGS!!!!!
 
Sending hugs! I have a very stubborn teenager too - completely refused a tube and EEN. It took a while, but she finally came around to the idea of a tube (not EEN though).

An NG tube sounds very intimidating, but once they get used to it, it's actually quite easy to deal with. She would insert it at night and pulled it out before school in the morning. Her GI really pushed it and that helped convince her that she needed one.

If he's refusing EEN because of drinking the shakes, I'd show him videos of kids inserting their own tubes. The first night was rough, but the second was much better for M and she got really good at it within a week or two.

I hope the higher dose of Remicade works like magic for him!! Glad he doesn't have arthritis - you guys definitely don't need another problem! Sending HUGS!
 
Craziness. Such mixed messages. Sorry you'd done Remicade because he has abscesses. Oh Remicade isn't strong enough, let's increase it... Doctors make me crazy!!!!
 
They do make me crazy! I'm not very happy with them today but with you guys supporting me, I can advocate and point out their inconsistencies and get this all straighten out.

Thank you all for giving me your opinions. This committee rocks!
 
Sending hugs :ghug:. I know of two kids on Remicade that were found to have antibodies but did well on higher doses. I hope that is true of your son too.
 
Malorymug, I'm starting to catch up on threads and hate to read this one! I am so sorry.

DUPLICATE
 
Last edited:
Malorymug, I'm starting to catch up on threads and hate to read this one! I am so sorry.

My son did steroids and when he couldn't wean without symptoms coming back, he did EEN. he still is about 30ish percent formula a year later. I totally get his reluctance to EEN. I'm tempted to put him in contact with my own 15 year old son for some encouragement. We moved from that dark ugly place of resistance to him just coming to get 2 bottles now before bed. He had 2 before practice tonight. I never thought we would get there but I am now official EEN cheerleader to anyone on this board. Call me Miss EEN.

Do a search on tips for EEN. There is some great info about bribing, paying, interactions with rest of fanily, how to manage socially.

Hang in there. Hope tomorrow is better. Crohn's sucks.
 
I also know a girl who went into remission once she went to a higher dosage of remicade. Let's hope he has same success.
 
We had our follow up appointments and repeat MRI today. The Abscesses are smaller and he has gained a pound. Yay!! The plan is to stay on the antibiotics (cipro and flagyl) for another month. We got the okay to continue on Remicade because the infection is responded so well to the antibiotics and we really need remicade to work its magic on the fistulas. Remicade has been up-ed to every 4 weeks at 10mg/kg.

I almost have my kid back. We tried a bike ride over the weekend, a 20 miler. He usually does okay but pooped out at 2 miles and we had to change the course. I know it will take awhile to get back his strength but it was certainly a significant change for him.
 
Glad things are improving for him
Hope the increase remicade and abx do the trick
Once in remission it takes about 6 months to a year to get back to normal pre dx activity
 
Glad he's feeling better :dance:!! And that the abscesses look better - that's promising! Fingers and toes crossed - hope the increase dose of Remicade works like magic.

I agree, it takes time. It took 8 months for my daughter before her belly pain went away.
 
Very glad to hear things are improving for him! It is always good to hear good news! He probably has to build back up slowly. Hopefully soon he will be doing 20 miles again!
 
So glad to hear this! Hope he continues to improve, and that the new Remicade dose works well for him.
 
An update. My son has been released from the Infectious Disease team (after 3 long months)! Abscess is gone and MRE next week will show us how the fistula is. My son is feeling great, eating more, and much much happier.

He is still on the 4 week 10mg/kg Remicade schedule. We will check is levels just before his next infusion.
 
Glad he's feeling better!! And, wishes the MRE results are good news only. :)

Are they hoping to lower his remicade dose? ie reason for checking levels.
 
Yes. They would love to lower his dose, but more importantly we are wanting more surveillance/monitoring. Prometheus is a great way to see if the medication is in his system.
 

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