Coccyx pain after j-pouch removal

Hello out there I‘ve been a silent reader of all your precious information since my emergency colectomy in 01/2017 and this forum helped me a lot, physically and mentally, even if I was too shy to join for a long time.  I was diagnosed with UC in 2015 and although I was never really in remission, I had only two very severe flares before my colon broke in 01/2017 while I was in hospital for several weeks. My whole colon was taken out and I got a j-pouch and a temporary loop ileostomy which was totally devastating to me at that time. I somehow managed to survive the pneumonia and huge inflammation after the surgery and learned to cope with my ileostomy. In 6/2017 I had my takedown surgery and was a very happy poucher until I experienced terrible butt burn, multiple food intolerances and around 15 bowel movements/24h. I still was optimistic and fighting to come back to life even though my health has never been stable (almost permanent inflammation still going on) since my takedown. My j-pouch finally failed for good due to an abscess that turned out to be a fistula about 3 weeks ago and I was told we had to repeat the whole process (temp ileostomy, j-pouch revision, takedown). I was still struggling with these unexpected news when I got a major nerve pain in my lower back/hip which got worse over days and I went back to hospital where they found another big abscess behind the fistula. I had my pouch removed the next day and an end ileostomy created but no barbie butt. I‘m still in hospital and today I am 12 days out of surgery and experiencing a numb and slightly painful sensation in my coccyx. I am having constant rectal discharge which is still slightly bloody and today had a bit of slightly bloody vaginal discharge too, which might be the beginning of my period. Sorry for all this information but the nurse is not being very helpful and my surgeon is on vacation and I am still fighting anxiety after all this unexpected shit. I would be so thankful for your thoughts and advice and I know I don‘t need to explain how I feel right now in this forum as you have all been there. Thank you in advance and best wishes to you all from Germany


Original Post

Sometimes coccyx pain can be a sign of an abscess, and that’s a possibility. Do you have a fever or chills? You’re just 12 days post-op, and changes are to be expected, but if you’re experiencing significant worsening at this stage you ought to speak to whoever is covering for your surgeon. In some places that requires an office visit, and in other places a phone call is a possibility. Maybe ask the nurse who is covering for your doctor? In the US you can sometimes more easily get through by calling after hours, since an answering service can contact the doctor who is covering, but they usually don’t contact the nurse.

Thank you so much for replying Scott! This is also what I fear the most. I have no fever but night sweat and a feeling of heat inside at some moments. Could be the healing process or something else..the numbness/pain hasn‘t got worse over night but isn‘t totally gone neither. I‘m still at hospital and hoping to go home tomorrow but I will speak to a doctor today and I want at least some blood work done before I leave. I have to come back anyways next week to have another small surgery for closing my fistula but I would really like to avoid any further complications. Thanks again, at least I feel less alone 

Hi Hermione, thank you so much for your support! Such kind words and compassion are always soothing and for sure helpful for the healing process

I could talk to a surgeon in the meanwhile and all wounds look good but they are keeping an eye on the pain and are checking my blood right now for any signs of inflammation *fingers crossed* 

have a nice day!

Hi Emma432 - Sorry you are going through this.  I just had my pouch removed on 10/29 (2 fistulas, severe cuffitis, etc.).  I had it disconnected a year earlier, however - at that time, I experienced numbness in my flanks area for several days afterwards the surgery.  The docs thought this was possibly due to positioning during the surgery itself - apparently, the patient is repositioned frequently and not always as gently as one would hope.   I didn't have pain in that area, however, and the numbness eventually went away.  Just another thought in addition to possible abscess, which I HOPE it isn't!   I also had a lot of discharge after the disconnect, but mine was not constant - it came in surprise attacks.  I was told to expect the rectal discharge.    I hope you find answers and feel better soon.

Hi N/A, thanks a lot for your reply, I‘m very sorry for you too, hopefully you feel better now that the inflamed pouch is gone! I hope you recover well from the surgery. I suppose my rectal discharge also comes in surprise attacks, I just don‘t notice as it goes directly into a gauze swab. May I ask if it stopped or at least got better over time? Do you still have it now after your pouch removal? Sorry for asking such indiscreet questions, but for such details I rely more on the personal experience of many than on what „science“ says


Thank you all again for your thoughts about my case, I got the results from my blood work and the inflammation markers have gone down pretty well during the last week and so I hope it is just my body adjusting to the new plumbing and healing from the massive surgery. I also noticed this feeling in my coccyx occured after walking around, maybe it has to do with my pelvic floor being involved in the surgery..? 

Anyway, your support helped me to stay relatively calm and the blood work gives me some good reason to be optimistic It‘s bed time over here, so I‘ll take my sleeping pill (one thing I love about hospitals) and give this poor body some rest  

Emma, the  rectal discharge continued until I had the pouch removed .  There was a period of time right after disconnection where it got quite severe - I couldn't even make it to the bathroom in time.  It did lighten up just a bit as time went by, but it never stopped.  I found it helpful to keep gauze in that area 24/7 (although it needed to be changed every time I peed), along with wearing a pad.  There is currently no discharge anymore of any kind since the pouch removal - not from the pouch, not from the fistulas.  

Hi N/A, thanks for the Information, I‘m happy for you that you don‘t have to deal with it anymore! I‘ll see if it gets better over time, my pouch is gone so I hope for the best. Doing the exact same with the gauze/pad thing, over time you just accept and find ways to keep your pants clean. 

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