question to those with end ileostomy/colostomy

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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 2/26/2011 1:36 PM (GMT -6)   
hi everyone,
 
i've had my loop ileostomy for almost 8 mons now. i wanted an end ileostomy, but my surgeon said he won't do it, at least not at first, cuz there could be a chance i'd want to go back. the problem is that i have severe anismus, which means the puborectalis muscle that holds all the pelvic organs is too tight. when there's a bm it's supposed to relax in order to let the stools pass, but mine doesn't, only tightens even more and won't let anything pass.
 
i know ppl with loop ileos have mucous discharge from their rectum/j pouch at least once a week, some every day, and an ostomate friend of mine has 6-7/day. it's been more than 7 mons for me and it hasn't happened. after the surgery i waited about 6 weeks and nothing happened, not even a drop of mucous came out, so i did an enema. but the prob is that even enemas don't really work and i manage to have only a tiny bit out. and when i do an enema, it consumes my whole day, cuz it only makes things worse, cuz the enema's stuff stays stuck in me..
 
i can't expel anything from my rectum and only feels like my lower abd and rectum are about to explode. some days it's very painful, the kind of pain that wakes me up several times at night. drs don't want to remove my rectum and do an end ileostomy, cuz removing the rectum is a major surgery and involves many complications. i know that it can cause troubles with the unary tract, nerve damage that causes horrible chronic pain for life and adhesions in the pelvic area can cause many other troubles.
 
i just don't know what to do with this whole situation. i did an enema just couple days ago and it didn't help much. i cant do enemas so often, cuz it ruins my whole day.
 
my questions, how many of you with end ostomies had severe complications from removing your rectum that left you with perm damage (chronic pain caused by nerve damage, problems peeing etc)? i assume your anus is sewn shut? do you still feel a need to "go"? i mean do you still feel a significant pressure down there like there's something that you need so badly to expel? if so, then how often do you feels it? i'm just not sure, cuz if you all still feel that urge a lot of the time, then maybe it doesn't make a difference and not worth to go through a surgery like that, only to feel the same i do now confused
 
thanks for any info/advice.

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 2/26/2011 3:07 PM (GMT -6)   
i still feel like i have to go occasionnally, it happened a lot for the first 2 or 3 months after surgery.  But after that it was like once a month or something.  It's not painful or anything.  I find that if i have to pee really really bad, and don't go, then i get that feeling.  But it passes pretty quickly.  I dont feel it in my stomach though.

bellypooper
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/26/2011 4:00 PM (GMT -6)   
 I have had my loop ilio for a year, very seldom feel the need to go the old fashion way. not so sure you should be giving your self enemas.have you checked with your dr. on that? also i do exercizes, to work my rectum[like after you have a baby] hope you get relief soon

Christine1946
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Date Joined Aug 2008
Total Posts : 5968
   Posted 2/26/2011 4:30 PM (GMT -6)   
     I have an end ileo.  For a few months following my operation, I did have the feeling like I had to "go".  My surgeon referred to it as "phantom rectum".  I no longer get that feeling.  I still have some mucus discharge though.  The surgeon did not sew my anus closed.

villager
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Date Joined Aug 2010
Total Posts : 130
   Posted 2/26/2011 5:32 PM (GMT -6)   
I guess everyone is different but with my end ileo & anus sewn, after the bum wound healed (2/3 months) I have no problems/ sensations at all from there. Now after 9 months I am also back cycling with no sign of it upsetting/ tearing the new skin there.

There are previous posts here discussing other peoples probs with the bumn wounding healing - i expect you have already seen these.
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 2/27/2011 2:37 AM (GMT -6)   
thank you all for your replies.

Christine, if you do still have mucous discharge, then as i understand it, the pressure feeling is not phantum at all, but reall stuff that needs to come out. fact there IS still mucous. lucky for you it doesn't stay stuck inside.

summer and Christine, i just don't know and dont understand, if the rectum is removed, then how can mucous still be produced? maybe they didn't take ALL of it out? maybe just a tiny bit is still left in there and that tiny bit is enough to produce mucous? maybe villager had it ALL removed, that's why he/she doesn't feel it at all?

bellypooper, i did check with my surgeon and stoma nurse and they are ok with me doing enemas, they don't see a problem there. if i don't do enemas at all, it'll get really painful (the pressure of mucous building up).
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

Christine1946
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Date Joined Aug 2008
Total Posts : 5968
   Posted 2/27/2011 7:42 AM (GMT -6)   
     They removed my rectum but did not sew the anus closed.  The day I came home from the hospital (very bumpy ride through the streets of Philly, some are still cobblestone), I felt like I had to urinate and all this foul smelling gunk came out of me shocked .  I still have no idea what happened, but it looked like the poop in my bag but it felt like it came out of my vagina!  I then started to have red stuff, which resembled the drainage in the JP tube (removed in hospital about four days prior), come out of the vagina.  I had a visiting ostomy nurse the next day (Saturday of course) and she tried to get ahold of someone from my surgeon's office.  The head resident phoned back and said if the drainage didn't stop by Monday, I was to return to the hospital.  It didn't stop completely, but did diminish considerably.  The surgeon said it most likely came out of the anus and NOT the vagina.  I went through the change of life twenty years ago and sure didn't want that to start up again.
     Long story short...I have had some mucus drainage, very little now, but still wear a pad, ever since, also some bleeding from vagina.   I did have a hematoma about a month post op which my surgeon drained in the office shocked .  I took an antibiotic for a few weeks following.  It was checked two weeks later and he said looked MUCH better.  My surgeon sent me for CT scans, MRI's of pelvic area, etc...everything A-OK.  My gyn doctor did a PAP smear and sent me for a transvaginal ultrasound...everything A-OK.   I have NO pain, nor did I ever have much pain at all even following my operation.  I feel terrific and would be in tip-top shape if it weren't for this darn osteoporosis which I have thanks to all the prednisone use when I suffered with UP.
     I don't have any pressure or the phantom rectum syndrome at all.  I see my surgeon on the 8th of March and will run this mucus issue by him.  However, I sure don't want him sticking that anuscope up there again nono .

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 2/27/2011 9:57 AM (GMT -6)   
I had mine removed with the original surgery, and haven't had any complications from that. They sewed it closed and I did have some phantom feelings for the first three-four months after surgery, but now I rarely have them.
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!! :)

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 2/27/2011 2:26 PM (GMT -6)   
just to clear up - my (he) understanding is that everything (colon/rectum/anus) has been removed in my one surgery in May 10, happily its gone so well that I'm just back from a weeks hol in the sun - its the first hol which I have been able to enjoy every day all day without any bathroom issues at all whatsoever - hill walking/driving /eating/ drinking / gettin a tan - even in the hot weather no probs with bags/ wafers etc
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 2/27/2011 2:33 PM (GMT -6)   
Christine, i followed your progress after your surgery and remember all that has happened. i don't think what happened to you was normal. i know i once thought that you may have a fistula, but your surgeon said not. but i also know that fistulas in the pelvic area are hard to be seen on tests, even MRI and CT don't always expose them. but i don't know. but i guess what's most important is that you're feeling great :) so i hope all of that issue is nothing to worry about.

i just wonder if i should insist on removing my rectum as well. i have about 20-25 cm of rectum still there and it produces lots of mucous. if i didn't have such trouble expelling it, i woudn't mind keeping it, as long as the mucous comes out, but i can't expel anything from my rectum and it's only giving me grief :(
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

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 2/27/2011 2:38 PM (GMT -6)   
so glad to hear you're able to enjoy life again, villager :)) that is absolutely great! wishing you many more yrs of health and happiness. maybe i should have my rectum removed as well.
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

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 2/27/2011 3:06 PM (GMT -6)   
Had my colon and rectum removed and sewn up 12 years ago. No problems and was back to work after 5 1/2 weeks, some phantom pain, only during my period, but not painful as such just odd feeling. Had colon and rectum removed as even with end ileostomy had lot of mucus, having to run to bathroom almost as many times as before I had the ileo done.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 2/27/2011 3:21 PM (GMT -6)   
hi stripey, i don't understand something, if your anus was sewn, then how could you go to the b/r at all after surgery?? am i missing something..?
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

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 2/27/2011 4:50 PM (GMT -6)   
Sorry, didn't explain it very well. Had loop ileo first in 1992, later that same year they turned it into end ileo as stoma had pulled back on itself but they left colon etc intact. Then in 1999 had colon and rectum removed and anus sewn up. It was after the loop and end ileo but before the colon removal than I had problems with mucus leaking.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/27/2011 11:38 PM (GMT -6)   
mine is closed shut i don't have anything come out, just sometimes it feels like i need to.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 2/27/2011 11:54 PM (GMT -6)   
Hodaya,

Did you call the colorectal surgeon that my surgeon gave me the name of and I passed along to you? His name was something like Dr. Viz, or Dr. Viv? I don't really remember. BUt you were going to call and see if he would suction the mucous out for you.

If you don't call him, try some other colorectal doc if yours won't do it. Or even some GI doc could do it. It is SOOOO simple. They just lubricate a thin sigmoidoscope, put it up there, squirt in a bit of water and suction the mucous right out. Takes all of 5 minutes at the most. I'm so used to it I don't even notice it anymore. I have to have it done about 2 or 3 times per year AND I have my entire colon making mucous. You only have your rectum making it.

This is REALLY weird but even with my puborectalis muscle angling my rectum at 90 degrees due to scarring of the levator muscle which the puborectalis muscle is attached to (this mimics anismus, but mine is from scarring,), AND the fact that my colon just above where my sigmoid colon used to be (that didn't need removing in the first place), the walls of my colon there are scarred and non-muscular anymore due to the failed anastomosis, even with all that somehow I can still poop out large strings of mucous at times. It DOES feel good to relieve that pressure. I have to go into a squat position, lean to the left, pull my left butt cheek to the left, and out comes the mucous. Who can figure this, but it works at least.

In fact, right after I got my ileo, one day about a month after surgery, I got the urge to "go" rectally really bad, I took a brisk walk, came home and a cupful of mucous just flew out of me into the toilet. Figure this, through all that scarring how the heck did I do this. Since that not that much accumulates.

My newest issue is that I have some very heavy feeling in my upper right right above my stoma. All is still working OK but that heavy feeling drives me crazy and by night it is really bad. My PCP did not feel any hernia and I will see my surgeon March 9. This Tues. I am having an ultrasound. I sure hope it is nothing like gall bladder or liver issue. I don't think I could stand one more physical problem. PLUS I have a Bahama cruise planned.

I will let you know about my May time in Israel, we may have a day where we could actually meet and you could spend the day with me and my friend. BUT the itinerary is uncertain about which day and how long due to all the issues in Egypt. The ship line needs to figure out what they are going to do so we can make our plans. I will let you know as soon as I know.

Call around and get that mucous sucked out. It is like the easiest fastest procedure in the world. I really don't get why your surgeon won't do it for you.

Good luck, Rosemary

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 2/28/2011 6:26 AM (GMT -6)   
thank you Rosemary. i know it's the simplest thing to just suck it out, but i don't know. i have an appt to a new surgeon on March 10, cuz i've been having pain right next to the stoma for a while now. everything looks normal - the stoma and the skin around, so i have no idea what that pain is. feels like i was bruised and hurts more when i touch it. i know i wasn't bruised there. the pain is not constant, just comes for few days, then gone like there wasn't any pain at all. then after few days comes back again. i will also ask him about sucking out the mucous.

i remember you mentioned the heavy feeling above your stoma. it's not normal to feel that. i hope it's nothing major.

you're right, compared to you, i have only 20-25 cm of a rectum that produces mucous, and i'm telling you this rectum produces enough mucous to drive me crazy.....!!! so i can't imagine what its like to have your whole colon produce it...... i wonder how Tracy handles it? doesn't it bother her?

good luck with your U.S test! i hope your dr can figure out what's causing this pressure feeling.

i can't believe we'll have a whole full day to spend together, that's so cool..... i should start making plans on things to do, places to go.... don't know Haifa much, but a good friend of mine can help us with that :) very excited and looking forward to that day!!
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 1:48 AM (GMT -6)   
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
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