Tail bone pain

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Jess83
Posts: 37
Joined: Sun Dec 02, 2012 7:06 am

Tail bone pain

Postby Jess83 » Fri Jan 07, 2022 6:55 pm

Hi All,
I’m about 6 months out from ULAR and 5 weeks out from ileostomy reversal.
After my ULAR in June, I had a bit of trouble with a leak from my new join. I ended up with a large abscess which was drained. It was very painful and just felt like massive pressure on my tailbone area. It then reoccurred and was drained again and the drain was left in place for 2 weeks.
In August I had a follow-up CT scan which showed the abscess had cleared and was now just a gas filled sac which had reduced by 50% in size - I was able to start chemo again.
Ever since then, I have had this pain on and off.
Thankfully the join has healed well and I was able to have my reversal.
I had the area dry-needled thinking it could be muscle related and this helped early on, but since I have had my reversal the pain has become more consistent and more uncomfortable. It’s keeping me awake at night and I can’t seem to get any relief.
Just wondering if anyone else has had a similar experience after reversal/resection?
Thanks
2012 - Stage 1, 29 Australia
18mm Polyp - T1 NX M0
May 13 - TEMS procedure, Clear margins!!!
Dec 20 - 35mm tumor next to original resection
Stage 4 with met to adrenal gland
Jan 21 - Adrenal gland removed
3 rounds of FOLFOX
March 21 - 6 weeks of chemo/radiation
April/May 21 - 3 rounds FOLFOX
June 21 - ULAR, loop ileostomy & removal of ovaries - leak, drained, reoccurred, drained again.
August 21 - 6 rounds FOLFOX
November 21 - Clear PET Scan - NED!
December 21 - Ileostomy reversal

User avatar
beach sunrise
Posts: 581
Joined: Thu Mar 05, 2020 7:14 pm

Re: Tail bone pain

Postby beach sunrise » Sat Jan 08, 2022 4:14 am

Oil of Oregano is a good pain killer.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Rikimaroo
Posts: 371
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Tail bone pain

Postby Rikimaroo » Sat Jan 08, 2022 9:41 am

Hello,

I am experiencing something similar after my recent surgery. I had a colectomy and a blockage cleared up. My pain sounds just like yours, it feels like pressure in the butthole/tailbone area. I can't say its exactly the tailbone, but more like just pressure and an annoying sensation that is just uncomfortable and yes it makes it hard to sleep at night. I figured maybe its from me sitting so much after surgery and sleeping sitting up, but its just odd. I have not said anything to my doctors about it and will see if it clears up in a couple of weeks, or months, or after I do chemo. I tried tylenol extra strength and it doesn't seem to work for it.

The sensation again is just odd, like pressure on the butt middle area to tailbone. Sorry I don't have more information, but yes its annoying. I don't really want to talk to my docs about it cause I am so sick and tired of doctors at this point
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.


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