tailbone discomfort

I am resurrecting this old thread to see if there are any more cases of people having tailbone pain after take down and whether there's more info on what it is and how to treat it.

I had my take down 5 weeks ago and have had this pain since about day 6 after surgery. The pain was so intense that it brought me to my knees and made me gasp. The surgeon said he didn't know what it was. CT scan showed everything normal - no leaks; no mechanical problems. Pain medication wasn't working on it. 

After a couple weeks it improved a bit -- no longer making me nearly scream but it was still very debilitating and waking me up at night. I counted one day that the pain hit me over 25 times.  It mostly occurred right before I had to go to the bathroom and going to the bathroom relieves the pain.

I started acupuncture for it and it has improved greatly within a week. I'm optimistic that it's just inflammation of the canal (or whatever you call it) down there and that it's hitting a nerve and that once I'm more healed it will go away. 

If anyone else has stories of tailbone pain and how long it took to get better (assuming it did) please let me know. I was surprised my surgeon hadn't heard of this since he does a ton of these procedures but perhaps this particular pain is very rare. 

Thanks.

I developed significant tailbone sensitivity (mostly when I got up from a bicycle seat)  a couple of years ago. It mostly has cleared up on its own, but it took almost a year to do so. I have no explanation. 

Taking this topic back on track... I am 5 months post takedown and was diagnosed with cuffitis. Traetment got me better (supositories Pentasa 1 gr) and Im pronto to complete the 6 month treatment. 

However the tailbone pain doesnt seem to dissappear any soon. There is an intense "pressure" pain everytime I stand after being sitting for an underteminate time. Coxy's cushions had work miracles but not 100%. The only relieve I found is to go and sit in the bathroom and poop; the pain tho is unbearable until I let huge amounts of gas pass out with a tremendous pressure. After that the pain is almost gone but if followed by an annoying Tenemus that also brings pain.

Anybody with the same events?

I posted a new thread on the same subject roughly a week ago but had no replies so I'm glad people have seen this! I had my takedown done 3 months ago and get random aching/dull pain to the left of my anus (which has settled a bit in recent days)... I say "pain" but it is barely even pain, I just don't know how else to describe. Along with this, I have also felt spasms in my left bum cheek and just wonder if it's all related and just something concerning my muscles or nerves. I haven't been in severe pain with any of it so I'm not worried.

Hi. I was the one who resurrected this old thread. I had about 3-4 weeks of acupuncture twice a week and the horrible tailbone pain gradually went away. Poof!

About 6 weeks later I thought it might be coming back because I felt pressure in the tailbone area a lot before going to the bathroom (like what I usually feel if I hold it too long) but that annoying feeling went away after about a week. Can't say why it came or why it went.

I've also felt something like spasms that Jordy describes. For me, I think it's from sitting on the toilet in a particular way. A bath with epsom salts helps relax all my muscles and I think the epsom salts also help with butt burn.

If anyone is in serious pain that could be nerve-related, acupuncture is a good thing to try if you can find a good practitioner. I've heard that medical marijuana can also help with nerve pain but that would depend on where you live and if you feel well enough to go through the process of getting a license. 

After my first takedown I had terrible pain around the tailbone area.  By the sound of the people here, mine might have been a bit worse?  Example, I couldn't "stand to stand" for any period of time had to lay down because the pain was that intense.  In my case I am 99% sure that I had a leak and there was an abscess.  Not sure if this is the case, but it sure seemed that a leak outside the pouch (highly acidic and nasty) was settling down to the lowest spot.  Again, not sure if this is what others are finding, but it needed to be addressed and I had a pouch redo.  Not to depress anyone -- but thought I'd $.02.

Years after my first pouch I had horrible lower back pain. Ended up being a leak and had a spinal infection from it. Went back to ileostomy for almost 2 years and had my pouch redone as well over a year ago

... thx, Poucho.  I think you and I were in the same boat!

aka KNKLHEAD posted:

... thx, Poucho.  I think you and I were in the same boat!

 

This is a bit terrifying... just to calm my thoughts, how strong was your pain? could you walk, go out on the bus, do your laundry, ride bike? or that was too painful to do? 

Poucho - To add to Carlo's question, did the pain come and go?

I would think that if it were something like a leak, it would be a constant pain. Mine came and went throughout the day. My surgeon had me go get a CT scan so we could see if there was something "mechanical" causing the pain. Once he saw nothing wrong on the scan - no leak- we assumed the pain was nerve pain. I was scared about a leak too, but it wasn't that.

I think I got a TAC with contrast right before the closure of my loop ileostomy to check if there were leaks or something mechanically wrong, but I guess not?

my pains started as on and off pains in lower back. Occasionally I would get a sharp zap down my leg. I thought I had a pinched nerve in my back. this went on for a few months, I was still able to go about my day and the pain initially was not intense, but when I would get those sharp zaps down my legs it hurt. I woke up one morning and could not stand up straight. Drove myself to ER and thye did CT scan and found it leaked it my spinal column and I had an infection in my spinal area that was causing the sharp zaps, they told me this leak must have been very small and took a lot of time before it got to that point. I had to have surgery 2 days later to go back to ileostomy. they tried several surgeries and procedures to try and fix it but they all failed. ended up having to get pouch redone

I was diagnosed with a Ulcerative Colitis in 2001 at the age of 14. By 2013 I had become steroid-resistant & exhausted all options. I had a total colectomy in March of that year. I felt better instantly — and even said as much while being wheeled to recovery immediately afterwards. Because my quality of life had improved so dramatically with my ileostomy, I elected to keep it for 3 years instead of reversing it out just weeks later (my surgeries were done in 3 parts instead of the usual 2). In 2016 I decided to pursue the j-pouch simply because my surgeon advised that if it was something I was interested in, we should do it sooner rather than later because we had no idea how much scar tissue there was & that was something that could increase over time, potentially preventing the reversal. After having IPAA surgery, I didn’t really seem to make progress in my recovery. I kept wondering when I’d notice improvement. After 9 months we found a sinus that had gone undetected & explained my lack of progress. I felt as though I had been having all the symptoms of a flare, albeit a mild version — nightsweats, urgency, lots of trips to the bathroom, diarrhea, back pain, accidents at night, with the addition of debilitating tailbone pain. It was extremely painful for me to sit or lay down. I was unable to get any kind of relief, as standing for long periods of time was also painful. It has been nearly 2 1/2 years now since the reversal & I am still dealing with the pain I feel in my tailbone (the level of pain varies). I’m one of those patients where everything that could go wrong, will. Or things that don’t usually happen, do. I would describe the pain in my tailbone as being a very deep ache. I can’t necessarily pinpoint an exact spot where it hurts. In some ways, it almost feels numb. We haven’t been able to figure out an explanation for the tailbone pain... could be nerve damage, the body’s response to not having a colon in the space anymore & not knowing what to do, the result of inflammation putting pressure on the area, pouchitis (this has not been the case for me), and we’ve even considered that I may be one of those individuals who’s condition needs to be re-classified as Crohns! Hopefully at some point we’ll find the answer.