ostomy problems

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San's
Regular Member


Date Joined Feb 2007
Total Posts : 79
   Posted 2/2/2008 9:41 PM (GMT -6)   
 
       nono I have a couple of poblems that I would like help with if any one out there has had the same problem.I have called my stoma nurse and she said that what I am going through is normal.I have also called me Surgeon that did my colostomy and talked him,and I don't feel as though I got anywhere with him either.My problem is simular to why I had the colostomy down in the first place.Before me colostomy,I have no control over my bowels,especially if I were to be out in pubic.I would be walking around and the next thing I knew,was I had a loose bowel movement and did not ever feel it or know it was coming until it was to late.I was left standing in the store,smelling like a baby with a messy diaper. I am going through the same thing again,except this time,it is mucus that I am  passing.I don't feel it,until it is to late,and the oder smells like a baby with another messy diaper. But when I am home sitting around,I feel like my butt is full and I have to have a bowel movement. When I go to the bathroom,all I pass is the mucus. The past week,I have been passing mucus about  four to five times a day. As for going out in public and having messy underwear,it happens when I do a lot of walking,and this has been going on for about a  year now. I really never know when or where it is going to happen. I thought that my colostomy would and should of taken care of all that.    When I talked to my surgeon,I asked him if this was normal,he said to a point. I asked him why he did not close off my rectum when he did the surgery.His response was,he did not want to put me in anymore pain then he had to. Then he turned around and said he could  of closed it off,or removed it,he said yes,but was it necessary NO.   So now I am going to another General Surgeon Specialist,who I hope can either do it himself or send me do a doctor that can help.Has anyone out there ever had their rectum closed or removed after they have had a colostomy done. I am desperet for some answers.   I told him that I have had several surgeries and I can take a lot of pain to a point.  I is my body and I feel as though I should of had the say,but was never asked.   Anyway,I would like to hear from anyone who has gone through a simular experience.     
 
 
                                                                                                                               Thank You
                                                                                                                                  walking scared  nono    confused
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
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summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/2/2008 10:37 PM (GMT -6)   
well i got all sewed up when i had my surgery so i don't know much about what you are going through. I know that sometimes they leave rectums if you are going to get a j-pouch. But usually if you have UC they take it out. I think you should find a surgeon to have it taken out.
good luck

DW38
New Member


Date Joined Jan 2008
Total Posts : 16
   Posted 2/3/2008 2:48 AM (GMT -6)   
I had a total colectomy, they removed my rectum and whole colon.  Removing the rectum will not stop the mucus.  Mucous will still come from your small intestines. I suggest that you have it closed off, or have repair on the anal muscles.
Ulcerative Colitis for 15 years.
Asocol     librax
colazal    levbid
lialda      imuran
prednisone   remicade
lexapro (wonder drug)
December 21,07
Total Colectomy-Ileoanal Resevoir
Now drug free, and pain free
Reversal Scheduled for Feb 8th, 08
 
 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 2/3/2008 8:58 AM (GMT -6)   
I had a colectomy with a temporary ileostomy in August, they kept part of the rectum to form a j-pouch. Right after the surgery I would pass bloody mucous about once a day usually when I urinated. This is completely normal from what I have been told. Two months later I would feel the fullness and began having painful spasms when I was expelling. I used suppositories, enemas and was taking painkillers as the pain traveled to my tailbone and lower back. My surgeon told me that the part of the rectum that was left was still inflamed with UC and the pain would go away after my second surgery where they remove most of the rectum and form the pouch which was January 14th. I had told my surgeon that if the rectum was too inflamed to do the surgery to remove all of the rectum and I would live with the ileostomy permanently. The pain did go away (thank God) but I've noticed that I am passing mucous while I am sleeping (only wakes me up because I am soaked) so now I wear a pad to bed.

Did they keep your rectum because they are going to perform the J-pouch surgery? Do you have Crohn's or UC? Is your ileostomy permanent? If it's permanent I would have the rectum removed, as long as it has a blood supply to it, it will continue to pass the mucous.

I know of someone who went in for the pouch surgery, but the surgeon saw that she had Crohn's and could not complete the surgery and left in the rectum because she was under anesthesia and could not give consent to remove the rectum. Over a year later, she had the rectum removed.

Hope this info helps you and good luck in finding your second opinion!
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
2nd step J-pouch formation -January 2008
Takedown hopefully by April 2008


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 2/4/2008 12:39 AM (GMT -6)   
This is very common...I got my ostomy December 2004 and my rectum removed in Nov 2007. I too had a mucus discharge from my rectum during this time period. I forgot what the medical term is but it is a form of colitis that helps keep the rectum moist. Since nothing is passing through the rectum it creates the "mucus" instead.

I was originally going to get a j-pouch but then it was determined that I was not a good candidate.

Erica
Erica
Crohn's and Ostomy in 2004


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 2/4/2008 12:53 PM (GMT -6)   
I used to have a temp. colostomy. I, too, passed tons of mucus, had sudden attacks (most times could make it to the toilet but not always!) and the constant feeling of having a full rectum. However, I also knew my problem was related to crohn's disease, a terrible stricture which kept me from getting everything out in one go, and just an abundance of disease and scar tissue throughout my bottom. Getting a permanent ileostomy after having a temp for so long (6 years) was a huge shock. I really went into the surgery with a great attitude. To have my bottom sewn shut was such a shock to me--I was really unprepared for it. I don't know if this helps but I've been through something similar anyway. Unfortunately, it does not sound as if the medical professionals you are dealing with are very compassionate. I'm sorry.

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 2/4/2008 3:00 PM (GMT -6)   
Hi San's!

I feel for you. My case is more similar to Jen's though, in that I had a temp ileoostomy, not a colostomy. However, I do have quite a lot of mucus that i have to get out several times a day. Some days are worse than others, but it is quite frustrating and uncomfortable, and disconcerting all at the same time, and yes, it does smell awful. Mine is a dark yellow, sometimes almost brown color, most of the time. Sometimes, there is as much as a full cup full it seems!

argghh... I want the same thing that Jen got, but my fear is, then the Crohn's would start to act on my small intestine, and I would be eventually get small bowel syndrome...such a tough problem. I go to see my surgeon and GI at the end of the month and will be talking it over with them very serioulsly. I am pretty much convinced I will be getting my whole colon, and rectum out, and have them close the door down there so I don't have to deal with any of this anymore. PLus, then maybe my fistulas would be gone for good? that would be like waking up and being a whole new person.
"The things that make us feel so abnormal, are actually the things that make us all the same" - from PostSecret: Extraordinary Confessions from Ordinary Lives - by Frank Warren


kimber633
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/19/2008 5:30 PM (GMT -6)   
i have had these problems for about 3 years. the past 2 months things have gotten 10 times worse. i started remicade at the end of feb. things got even worse after that. in the past 72 hours i have given up all sugar from my diet and things have improved 95%. no accidents or urges to have a bowel moment. not one doctor that i have gone to has ever suggested that it could be caused from what i eat. they all said diet has nothing to do with it. maybe it doesn't but for now i'm enjoying every stress free moment of my remission!!:) i hope this helps someone out there.

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 5/28/2008 11:37 PM (GMT -6)   
I've had an ostomy for 19 years. I had my colostomy changed to an ileostomy in '03. I still have my rectum as well. I also pass mucus on a regular basis. What I do is put a small amount of toilet paper there(you know where) to collect what ever mucus comes out. The doctor told me this is perfectly normal(as the rectum is constantly secreting mucus) and I've gotten used to the process of changing the TP whenever I empty the appliance. The paper does smell pretty rank once I remove it only. I hope this helps.

GSUonion
New Member


Date Joined Apr 2008
Total Posts : 8
   Posted 6/2/2008 1:04 PM (GMT -6)   

I had the same problem before my reversal. Mucus 2-4 times a day. I was told by my surgeon that it's "diversion colitis" and that anyone would have this due to being diverted. My first ileo was 10/04,(80% of colon removed) I had it reversed in Jan. 05. Had the 2nd Ileo in 3/05 due to Crohn's in the rectum. I waited three years before getting enough nerve up to try the reversal again. I reversed on 4/1/08....no go. I'm scheduled for my baggie again on 6/11!!  It can't come soon enough!

 

 

 

 


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 6/4/2008 11:27 PM (GMT -6)   
GSUonion said...

I had the same problem before my reversal. Mucus 2-4 times a day. I was told by my surgeon that it's "diversion colitis" and that anyone would have this due to being diverted. My first ileo was 10/04,(80% of colon removed) I had it reversed in Jan. 05. Had the 2nd Ileo in 3/05 due to Crohn's in the rectum. I waited three years before getting enough nerve up to try the reversal again. I reversed on 4/1/08....no go. I'm scheduled for my baggie again on 6/11!!  It can't come soon enough!

I guess sometimes the devil you know is better than the one you don't!

 

 

 

 



epeters
Regular Member


Date Joined Feb 2004
Total Posts : 28
   Posted 6/5/2008 12:26 AM (GMT -6)   
I had that problem when I was pregnant. I couldn't really do anything about it, however, maybe you should ask your doctor about an enema. There could be something that you could administer each night, or maybe once at night and once in the morning that would help this. I'm not sure, but it's worth asking about, especially if it helps! Good luck.


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