Rectum removed but still feel phantom urges

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nene205
Regular Member


Date Joined Jun 2007
Total Posts : 294
   Posted 9/7/2007 9:45 PM (GMT -7)   
 I had a complete protocolectomy 5 weeks ago. I am slowly adjusting to new way of life. If it wouldn't have been for the support of my friends after my surgery, I would have had a much harder time adjusting because I am a super worrier. My problem is that I still have sensations in my anus which are driving me crazy.  I constantly feel like I have to go to the bathroom like I always did. I guess you would call these phantom urges. Please let me know of any means to ease this.  My doctors don't seem to care!
 
NeNe 205

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2764
   Posted 9/7/2007 10:25 PM (GMT -7)   
NeNe,
The area where your rectum was removed is healing, so you're going to feel urges and sensations down there. It's normal and will go away, although I wish I knew of a way to make it go away quickly. Maybe someone here will know of something you can do. All you can do is ask, right?
Take care,
Cecilia
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1195
   Posted 9/8/2007 12:28 AM (GMT -7)   
It's called Phantom Rectal Pain and is something the docs forget to warn you about. Just like someone who has had a limb removed but can still 'feel' it itching, so your body has to get used to it's new plumbing. The only way I found to relieve it was to go and sit on the loo like I used to do even though I knew nothing would come of it.

The good news is that in time, it will lessen in frequency and eventually go away altogether :)

Good luck.


I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 9/8/2007 1:09 AM (GMT -7)   
I also had that phantom pain/urges, but they eventually went away. Be paitent. It is just part of the healing process, like the girls said above. Sorry there is no quick way to end it that I know of. Hang in there!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Pin Cushion
Regular Member


Date Joined Feb 2003
Total Posts : 442
   Posted 9/8/2007 2:55 AM (GMT -7)   
It has been 5+ years since mine was removed and I still catch myself raising a butt cheek when I fell gassy and feel like I gotta rip a good one.
Sometimes it helps when you get it to go and sit on the toilet till the urge passes.
Moderator for the Diabetes forum
 
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus / Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?



* I think it may be time for a colorful metaphor*


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 294
   Posted 9/8/2007 1:59 PM (GMT -7)   
Thank ya'll for replying to my problem. The scariest part of this whole ordeal is not knowing what to expect. I can can usually cope with about anything if I know that others have experienced the same thing and have lived to tell about it.
NeNe205

ritasam
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/25/2011 12:43 AM (GMT -7)   

Hi,

My mom underwent permanent ileostomy in december 2010. It has been almost 3 months now and she is continously experiencing pain in her rectum area eventhough it is sewn closed. But her pain in continous. She needs to take pain medication twice a day for relief. Can somebody let me know if this is normal? I heard about the phantom pain. Will it be continous? Will it fade away as time passes? Please let me know.

Thanks


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 3/25/2011 4:41 AM (GMT -7)   
I don't think that pain sounds normal...it may be worth contacting the dr.

As for the phantom urges, I had those for about 6 months after surgery, and now I'm good. Unfortunately not much you can do about them except smile and be glad they ARE just phantoms and you can go about your business :)
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/25/2011 5:53 AM (GMT -7)   
this pain is not normal. sometimes after surgeries like these there could be nerve damage, has your dr mentioned anything like that? is she being treated at a pain clinic? i also think you should contact her dr. hope there's a solution for her pain.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

ritasam
New Member


Date Joined Mar 2011
Total Posts : 3
   Posted 3/25/2011 9:28 AM (GMT -7)   
Thanks 80sChick and 2bColonFree!

She did contact her doctor for the pain and they mentioned it is normal and gave her pain medication. Her pain is more of like a spasm and it only relieves after she takes pain medication. She is 72 years old she underwent 3 surgeries for her colon cancer. I will ask her to contact the Dr and see what he is to say.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5534
   Posted 3/25/2011 9:32 AM (GMT -7)   
     It's been 9 months since my surgery and I still get that feeling from time to time.  It has lessened some.  I still have mucus coming out the anus but the surgeon said that will go away eventually too.  Funny, but last weekend I had a dream where I pooped out a live chicken and ever since that night, I have had some pressure in the anus.  Wonder if I was straining while asleep..lol.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 713
   Posted 3/25/2011 7:09 PM (GMT -7)   
I had a lot of phantom urges for about a month after surgery, and I found them so annoying. Fortunately, they reduced a lot after that, though I still get them occasionally- especially if I am feeling gassy. They were never painful though... just felt like a had to have a bowel movement.

The muscles deep in my rectal area did hurt for a while after surgery and still do a little bit now that I am 4.5 months out from surgery. It is very slowly fading away. I asked my surgeon about this last week and he said this is normal as that area takes a while to heal. Still mine are nothing I would need pain meds for. If you are worried and your mom's pains are that severe, I would definitely ask about it.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010
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