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Veteran Member

Date Joined Dec 2008
Total Posts : 1325
   Posted 12/29/2010 2:04 PM (GMT -6)   
Gilda, I just read that you had the ileo in November. I just wanted to say that I am very sorry that your ileo is retracted below skin level. Did the doctor offer to re-do the ileo so that it sticks out?

You are only 3 weeks out and that is still very early days. It took me a good 4 months before I was comfortable taking care of my ileo and not so self conscious about it. It has now been 6 months and I am turning into an old pro. :)

Is your ileostomy a temporary loop ileostomy? How was your surgery? Was it very painful?

As far as your appetite, I am hoping it will improve. It took me several weeks before I could eat a normal amount.

Please post with any questions or concerns that you may have, This board has been wonderful helping me through the learning curve of taking care of my ileostomy. I think I learned more here than I did through my doctor or stoma nurse....LOL

Thinking of you and sending prayers and good wishes your way, Tracy

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 12/29/2010 6:56 PM (GMT -6)   


Glad you posted to Gilda.  Being still out to sea I must have missed the posting that said she went ahead and got the ileostomy.  Bad news that it retracted.  Hope she comes back to us so we can tell her about convex wafers and so on if stoma revision isn't for awhile or at all(?)  Gilda, I feel bad that your stoma retracted, hope your doc and stoma nurses are helping you.  I know you put MUCH thought into your decision.  We are thinking of you.


Regular Member

Date Joined May 2009
Total Posts : 194
   Posted 12/30/2010 1:13 AM (GMT -6)   
Hi Tracy & Rosemary,

Thanks for your responses. Yes I did have a temporary loop ileostomy. My doctor originally planned for me to be in the hospital for only 3-4 days but I had to stay for 7 days. My stoma wouldn't work at first so they had to "irrigtate" it while I was in the hospital. The doctor (or nurse) would put this 10" very flexible tube into my stoma and basically drain my small intestine. At first this was very frightening to see but I soon learned how to do it so I could leave the hospital. For my first week at home I had to do this procedure on myself. Now my stoma still sometimes stops outputting for a couple of hours at a time but I don't get the stomach distension and pain like when I was in the hospital. Since my surgery was on Nov. 23rd I am actually 5 weeks post-op. I guess what is hardest for me now is being so aware of wearing a bag, worrying about leaks and wondering how I will ever feel comfortable having sex with my husband again. I know there are covers to put over an ostomy bag; my stoma nurse isn't really that helpful when it comes to educating me about supplies. I have a male nurse that is part of my Home Health Care following surgery. Tomorrow is his last visit. I guess after that my insurance will cover for me to go to an Ostomy Clinic for care and education. Is this what most people do? Thanks for your help.

2b ColonFree
Veteran Member

Date Joined Nov 2008
Total Posts : 2603
   Posted 12/30/2010 7:27 AM (GMT -6)   
hi Gilda,

that is so upsetting about your stoma retracting like this.. it's really hard to take care of and causes leaks. at some point you'll have to have it repaired. i want to try to insist on having an end ileo some time soon. my stoma is also starting to retract more and more, not as bad as yours, but enough to make it hard to take care of and since i've made up my mind about keeping the stoma for the rest of my life, why not making it an end ileo. i'm not doing it yet, but planning to in the future.

i hope things will improve for you soon. love and hugs to you!!
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Veteran Member

Date Joined Dec 2008
Total Posts : 1325
   Posted 12/30/2010 11:46 AM (GMT -6)   
Gilda, have you tried to place an eakin seal around the stoma to see if this will help to keep the stool from getting onto your skin? How is your skin looking now?

As far as the freak out stage....this too shall pass! I used to feel so nervous and self conscious, but those feelings have gotten better with time. I have even told several people at work that I have a stoma.

As far as sex....go to Target and buy a belly band that is sold in the maternity department. This will hold your bag close to your body and helps to prevent the rustling sound that the bags make. I also bought a cloth pouch cover and this also helps with the rustling sound and also to hide the contents of the bag. Since it has been 6 months now, I sometimes just let the bag hang while we have sex. It does not bother my husband in the least nor does it get in our way.

I bought a hernia belt and love it. It keeps my wafer snug against my body and this helps with the pulling feeling.

Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 12/30/2010 3:05 PM (GMT -6)   
Hi Gilda,

Good luck with everything. Tracy is the best source of info in getting on quickly with life. My situation, as you know was different, so I malingered a bit more than I perhaps shoud have, but after all had my original surgeons in 2006 not done sigmoid resection I didn't need AND do it wrong, then I would not even be a "bag lady" or we should say "Pouch lady." Sounds classier! But I do ballroom dance, and cruise, and travel a ton. This morning I swam in the ocean in Barbedos. So it does come, just give yourself time. Just tell your husband that you will be "ready" when you are ready. Sex is never an emergency. Too bad you did not get a good stoma nurse and I think a female would have been more appropriate for your case. The stoma nurse sets the tone early on. I was blessed with 2 angel stoma nurses. I have gained a lot and tire easily. I gotta get my thyroid checked. I don't want to gain too much weight as that does not help a stoma either. Good luck, Rosemary
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