Results 1 to 8 of 8

Thread: Trying to diagnose severe prolonged rectal pain...

  1. #1
    Senior Member
    Join Date
    Feb 2008
    Location
    Eastern US
    Posts
    101

    Trying to diagnose severe prolonged rectal pain...

    I've been dealing with a nearly constant burning pain for about 2 years. It began just prior to my loop colostomy and urostomy op. at first i put it down to hemorrhoids and 12 years of digital stim 3-5 times a week during my bowel prog. reason for the colostomy was gastroparesis...urostomy due to years of back to back to back utis. after the surgery the burn kept getting worse and worse with fewer and fewer 'good' days. at present i get 1-2 days a week where the pain is about a 3...all other times its a 6-9 range. doc says i have just a couple of stage 3 internal hemorrhoids that should only cause pain when exposed and my lidocaine 5% - hydrocortizone 2.5% should easily relieve the pain for hours at a time...but it just barley takees the edge off for ~1 hour tops. for thesse reasons he doesn't think hemis are the culprit. i've also been bed bound the last 9 month of an 18 month battle with a pressure wound on my butt. almost fully healed now after getting a muscle flap. i've been cleared to get back in my chair for two months now but after 15 mins the pain gets soo bad it kicks off my dysreflexia....bp spikes, sweats, and headache...textbook ADs. had a spinal nerve block at s4...did no good at all...currenly i'm on 70mg a day oxycodone which also just takes the edge off which means this may be nerve pain. seen a colorectal surgeon...after examining said it appeared as though my sphincter muscle wasn't quite closing all the way and could be the cause. once my wound is healed hes gonna get rid of the hemis and scope mev and go from there. needless to say after an 18 month battle with this wound AND a near constant severe burning butthole, my quality of life is utter shit. if not for my wife i don't think i'd make it.

    If anyone has dealt with anything similar, i could sure use some insight. if the cause isn't found soon i am going to literally lose my shit...i just can't endure being totally bed bound and in constant never ending pain much longer. i'm to the point of just telling the to remove my plumbing totally as my disused bladder it starting to cause problems as well but thats another post in itself. tia for any guidance or advice. peace...
    C6/7 Complete

    14 years post injury

  2. #2
    Senior Member
    Join Date
    Feb 2008
    Location
    Eastern US
    Posts
    101
    after reading some butt pain threads, i wanted to add that i've tried neurontin, lyrica, and currently am on cymbalta...no luck tho.

    Could a mod please move my post to the pain forum...thx
    C6/7 Complete

    14 years post injury

  3. #3
    Sounds like you have a form or neuropathic pain. Perirectal pain is fairly common in those that have an incomplete injury with some sacral sparing, and this can get worse with time. It is a form of allodynia. Have you tried a TENS unit? This can sometimes be helpful. i disagree with your colorectal surgeon...the hemorrhoids could be related, so it is best to get them treated.

    Also, would definitely want to be sure that you don't have an abscess or some other residual problem related to your recent flap. Have you had a recent CT or (better yet) an MRI of that area? It may not be seen with a rectoscope or sigmoidoscopy.

    Have you been tried on Tegretol for this neuropathic pain?

    (KLD)

  4. #4
    Senior Member
    Join Date
    Feb 2008
    Location
    Eastern US
    Posts
    101
    did have a rectal ct...was negative/unremarkable. will push for an mri tho. never heeard of allodynia....will search it up, along with Tegretol. will be getting the hemis removed and a scope while hes at it. thx 4 ur time, as always.


    just looked up allodynia....sounds exactly like what iis going on! al la RSDS.

    https://en.wikipedia.org/wiki/Allodynia
    Last edited by Boompow; 07-25-2015 at 07:12 PM.
    C6/7 Complete

    14 years post injury

  5. #5
    Senior Member
    Join Date
    Feb 2008
    Location
    Eastern US
    Posts
    101
    Seen a neurologist yesterday. After a routine neuro eval and 20 mins of laying it all out for her, I get told we don"t get many sci patients...I'd like to refer you to an 'sci specialist'. At first I thought cool, there's an sci specialist in my area?? Reading the paperwork on the way home, I realize its my rehab doc I've been seeing off and on for the last 13 years! Why a rehab doc?/ Doesn't seem like my issue fits his area of expertise...don't get me wrong, he is absolutely the best sci rehab doc in my area...just think my primary doc shoulda sent me to a neuro surgeon, not a neurologist. Well at least he'll probably know the best surgeon for my case. Gonna be ANOTHER month until I see him then probably yet another month after that for the referral. Minimum 2 more months with my butt hole lit on fire!! DAMN IT!!!

    Oh...your diagnoses of allodynia was confirmed SCI Nurse...thank you!
    C6/7 Complete

    14 years post injury

  6. #6
    Senior Member
    Join Date
    Feb 2008
    Location
    Eastern US
    Posts
    101
    Just had a full spinal mri series done. My doc wants to rule out a Charcot joint causing referred pain.

    The wound on my butt cheek is now healed after a 18 month battle and muscle flap. I am now officially bed bound by nothing but my burning rectum. Paralyzed AND bed ridden for going on 2 years...my life is shit...I have no life. I lay here, watch TV, shit n piss in bags and hurt 24/7. Don't think I can do this much longer.
    C6/7 Complete

    14 years post injury

  7. #7
    I would recommend a pain clinic team evaluation. They would have a MD, NP, Pharmacist, Psychologist, anesthesiologist on the team. You need those perspectives to get good recommendations.
    Tegretol could be a good choice. Any pain choices for meds are not "magic" and any recommendation take a while to work by titrating up to a therapeutic dose

    pbr

  8. #8
    Senior Member
    Join Date
    Feb 2008
    Location
    Eastern US
    Posts
    101
    Already done so...2 different clinics actually. Return in 2 weeks to see whats next...will bring up the tegretol for sure...and thank you...sry for sorta loosin it my last post.
    C6/7 Complete

    14 years post injury

Similar Threads

  1. Severe Pain Requires Severe Meds!
    By mike bauer in forum Pain
    Replies: 13
    Last Post: 09-16-2017, 04:31 PM
  2. Replies: 28
    Last Post: 04-05-2013, 01:41 AM
  3. Rectal pain, Anyone?
    By seawalker in forum Pain
    Replies: 27
    Last Post: 11-22-2011, 01:02 PM
  4. rectal pain
    By mrbreeze in forum Pain
    Replies: 18
    Last Post: 09-13-2011, 07:04 PM
  5. Replies: 6
    Last Post: 04-29-2003, 02:55 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •