So I've been dealing with tailbone pain for quite some time. I went to the doctor for it, she thought maybe I had some sort of infection, I thought I might have a pilonidal (sp) cyst. She gave me some antibiotics ran the course and saw no improvement. There is nothing visible but it is sort of tender to the touch, I can pinpoint the pain. It is not my tailbone exactly it is above it in the top part of my butt crack. I have not fallen, or had previous trauma. Has anyone experienced this? I am not sure if I should go back to my primary doctor or seek out my GI doctor. I feel great otherwise, no pouch problems.
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Winnie,
I have a few questions:
1. is it sudden onset (appeared out of nowhere, suddenly, one day) or has it been there all along? (maybe getting worse over time)
2. Is it more sensitive at certain times of the day? (mornings upon waking up, after work...)
3. Do you get any relief from certain things (ice pack, heating pad, walking, anti-inflammatory meds like Advil)
4. is it worse when your pouch is full or empty?
5. Does the pain change with your diet?
6. Are you running a fever (even very low grade?)
7. Are you experiencing any flu-like symptoms?
Think about the questions before you answer them...They should give you a good indication of which direction to go in...and maybe what is really going on.
Sharon
HI Sharon,
The pain has been around for quite sometime-some days are worse than others. It really bothers me after I've sat for a long time, especially on a hard service, like the ground, or kitchen chair with no cushion. It is worse when I lean forward to get up out of the chair, or stand up after sitting for awhile on the ground. The pain seems to vary in intensity, and I feel like it gets worse when my period is about to start. I have not had any change in diet, and no matter what I eat it is always there. No certain times of day it is worse per sea except after a long day of sitting at work, it is fired up as expected (I do sit on a special butt cushion at work when it is bothering me). It doesn't matter if my pouch is full or empty, nor am I running a fever. I do think taking Advil does take the edge off the pain. No flu symptoms. I just know what it is; and to me the lack of people experiencing this leads me to believe it is not pouch related.
Winnie, your description of your symptoms sound eerily like mine when I had a presacral abscess. I had low grade fevers, 99-100F. It simmered along until I spiked a fever of 105 and was admitted to the hospital for 12 days. I wound up needing an external drain through my butt cheek for a month until the abscess pocket completely collapsed. Do not assume this is not pouch related. Ask about a CT scan if this continues. See your GI or surgeon. Could be a pilodonal cyst, or something else.
Jan 
Ditto on what Jan said...it could be a slow, festering abscess or it could be something related to the sacroiliac...both would do well with a scan...it will allow the doctor to narrow down the list and decide what course of action to take...the sitting then more pain could be either an abscess, a cyst (ovarian but towards the back) or a sacroiliac problems...they all need different plans of attack...please do get it checked out.
Sharon
Granted, abscess type complications are usually seen in the early months post op, but stranger things have happened. It easily could also be from adhesions that are getting more problematic over time. But, either way, it is good to rule out something more nefarious.
Jan
Thanks Jan and Sharon! Going to doctor tomorrow.