Pain internally after proctectomy

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Joined: 2016-12-19 18:17:29

Re: Pain internally after proctectomy

Post by Nehamashira »

Thank you for posting this. I had my ileostomy in 2000, and after years of diversion colitis, am about to have the rest removed. It is interesting to read of the experiences of others. I am told that I have a considerable amount of scar tissue, and will be having two surgeons attend during the procedure. If they cannot complete the surgery via perineal access, they will have to do a laparotomy. It is a bit unsettling to read of all the pain issues following. I am a palliative care nurse and want to be working again asap.
Thank you for your candid response.
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Diane C
Posts: 1006
Joined: 2005-10-02 08:30:29

Re: Pain internally after proctectomy

Post by Diane C »

The above posts go back to 2016. After reading them, I'm VERY reluctant to have a proctectomy or removal of tha anorectal canal which is affected by inflammation. I wonder why there's pain after the anorectal canal is removed. The answer for me is to start a regimen of do-it-yourself fecal transplantation to restore the short-chain fatty acids found in feces back into my anal canal. If you're unfamiliar with this, I can explain later or someone else can.

I hope all who posted here are feeling better -- and wonder.

Thanks for any replies.

Diane C

2000 MACE for chronic constipation/pelvic floor syndrome
2002 - Colectomy
2015 - Surgery for Sigmoid Abscess
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Joined: 2020-05-14 17:03:03

Re: Pain internally after proctectomy

Post by mcreeker »

I have had an ileostomy for over 40 years. I never had a problem except for leaks on occasion. About 7 months ago, I developed a pain in the rectal area. It felt like something was trying to push out and there was also a stabbing, throbbing pain. I have been to a gastroenterologist, a urogynocologist, a colon/rectal surgeon and a pain management doctor. Last week, the pain management doctor performed a "ganglion impar" which is a nerve block in that area. It has given me no relief. I also have a hernia which was formerly repaired but resurfaced. I am thinking that I must have adhesions in the perineal area but I don't know why they would suddenly appear after all those years. X-rays and MRI's reveal no problem. I can get set up for the hernia repair and while the doctor is doing that, he could also do a lysis of the adhesions. Has anyone else had this problem and found a solution? I am taking vicodin and gabapentin every 5 hours which helps but gets in the way of quality of life. Thank you.
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Joined: 2020-08-05 14:35:07

Re: Pain internally after proctectomy

Post by Mjc »

I am having the exact problem regarding pain in the rectal area after an illeostomy performed 40 years ago. Complete Barbie Butt no problems until about 6 months ago. No I have sensations, pain, aches that come and go but are never really gone. I mentioned it to my dr and she shrugged her shoulders. Sometimes it is bad sometimes it is relaxed a bit. Anyone else have this? All input is appreciated.
ulcerative colitis - age24
total colostomy age 25, ileostomy for 40+ years
total hysterectomy
Posts: 1
Joined: 2021-09-08 10:44:24

Re: Pain internally after proctectomy

Post by dannyc »

i had my ileostomy done in 1982 after 9 1/2 years of uc. since 2000 i have had pain where rectum used to be. i take oxynorm, fentanyl and pregabalin. in thebpast i have had various types of pain. im told that i should drop pain relief but for last two weeks have had severe pain 8 out of 10 that felt like a massive chinese burn.

pain teams shrug shoulders while saying pain relief is not due to meds and im on too much. but im at wits end so exhausred by electric shocks that wake me. i did have stimulator but the pain team responsible for changing the battery say worrying things like "you're not using 24x7x365, we wouldnt have given you pain meds." basically i get feeling they dont want to change battery.

however knowing im not alone means alot to me. its not my imagination, or my fault, its not just anxiety causing pain its the nature if the procedure which apparently is the 4th most painful you can have!!

sorry this turned into whinging but i have to try and let go of the additional stress caused by unsympathetic pain "specialists"
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Joined: 2022-02-15 04:46:03

Re: Pain internally after proctectomy

Post by ASollo »

Same here with me. I had this problem about 12 years ago following a hernia op on my groin, but it seemed to fade away with only an occasional twinge, until about two weeks ago when I was recovering from a pulled thigh muscle in the same area.

Thigh muscles got better, I got back on my bike (bearing in mind I am fit, healthy, active, rode nearly 5000 miles on my bike last year) and then that evening I was hit with an initially stabbing pain right in my rectum scar, which now feels uncomfortable to sit, stand for a long time, drive, ride my bike, etc.

It starts about 1/4 hour after I get up, and stays with me till I got to bed, getting worse and worse as the evening goes on.

My thoughts are that it is back related or some kind of bruising to the coccyx or pudendal neuralgia from all the cycling I do, but it varies from stabbing pain, to cold and hot, to a feeling of a lump under my backside/tailbone. I get a cold feeling in my back when I stand, and a feeling of pressure and feeling internal gas drumming against my lower back and the rectum area.

It's odd that this started related to a groin injury too. Doesn't spread any further forward to my perineum or my private bits. It also gets a bit of relief when I'm walking.

Very uncomfortable, and rather debilitating.

Doctors just sending me to a back therapist, my sport therapist is more understanding

Want to get back on my bike again.
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