Colostomy scheduled in a few wks

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Tinamarie
Regular Member


Date Joined Feb 2009
Total Posts : 28
   Posted 2/27/2011 3:56 PM (GMT -6)   
This will be my 10th surgery after a blotched bowel resection two and a half years ago. I had a temporary ileostomy a couple of years ago after developing a fistula from the initial surgery. I've since gotten help through surgeons at the Cleveland Clinic. My rectum and sphincter muscle are non-functional. I am sick so often and have such difficulty both passing and controlling bowel functions. They performed a defecography test a year ago and it showed that I could only expel 10% of the barium...the average is 80-85%. 50% is bad, 10% cry Everything has just gotten worse, so the surgeon agreed this was my only option. I do trust her and have gotten a second opinion anyway. That doctor agreed that I had two options, either a total bowel reconstruction (which Cleveland felt would fail) or the colostomy.

I'm just really scared. I had a terrible time with the ileostomy. I was sick all of the time, wound up with gastritis and had such skin irritation from either the appliances or the leaking under the wafer. Can someone please share what to expect? How do you control accidents? How long it takes to recover? Am I making the right decision. I can't even begin how to explain how terrified I feel.

Thank you so much for any advice or support you can lend.

Tina

Post Edited (Tinamarie) : 2/27/2011 2:07:09 PM (GMT-7)


bellypooper
Regular Member


Date Joined Feb 2011
Total Posts : 20
   Posted 2/28/2011 1:19 PM (GMT -6)   
hi tina, I have had 2 colostomy's and now have an iliostomy. let me tell you the colostomy is a whole lot easier to deal with. output is not as liquid and smell not as bad. I believe once you get a bag system thats right for you you'll be fine. be sure to visit a stoma nurse before hand,they can mark a spot that works with your clothes well and your lifestyle. good luck on your upcoming surgery.
think positive, live life to the fullest!!!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 2/28/2011 2:50 PM (GMT -6)   
with a colostomy leaks are rare or maybe even impossible, unless you caught a virus and have diarreah. but surely it should be much easier for you with the colostomy than with the ileostomy. i have a similar problem, i have anismus and can't expel anything from my rectum and it consumed my life for so many yrs. i now have an ileostomy and feel the best i've felt in yrs. no matter how much money they offer me, i would never ever go back to the way things were. i wish you the best of luck and hope this is your last surgery.
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

Tinamarie
Regular Member


Date Joined Feb 2009
Total Posts : 28
   Posted 2/28/2011 3:31 PM (GMT -6)   
Thank you so much for you responses. I also had a STARR procedure 12/08, 2b followed by a blown muscle during surgery. A few wks later a fistula which incurred the ileostomy. Several mos later, the surgeon had to graph over the bowel resection bc it was not healing. I've also had 3 pelvic floor repairs.

It is just comforting to have some place to come to not feel alone with this. I am worried about getting used to the wafers again. I used to get skin infections frequently. Can I ask you both why you needed additional ostomies? It sounded to me that I shouldn't need further surgery unless I have problems with mucus collecting in my rectum. If so, then she would remove the rectum.

Thank you for being here. I really appreciate your positive support and input.

Good health to all.

Tina

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/1/2011 4:28 AM (GMT -6)   
you're most welcome Tina! WOW you had a great deal of comlications just from the STARR.... my STARR procedure wasn't involved with any complications at all, but i think it did cause me anismus :(

i don't know what was the reason for your skin infections in the past, but i hope that with getting the right appliance that works for you should be ok. maybe you were allergic to the wafers? which one was it, hollister, coloplast or other? i think this time you should have your stoma nurse work with you to find the one that is right for you.

to your question about my needing an ostomy, my story is that i had colonic inertia for 16 yrs (age 20-36). i was struggling with it really bad and nothing helped to improve my quality of life. my first defecography on Dec 2005 showed severe intussusception and a small rectocele. the surgeon suggested the STARR procedure, but they missed diagnosing the colonic inertia, so the STARR wasn't enough to help with my constiopation. so i had more tests and they showed colonic inertia and on Aug 2009 i had my colon removed. they removed my whole colon and attached the small intestine to the rectum. well that was ok for about 2-3 mons, then i was getting constipated again and no bms w/o laxatives. the reason was that i have severe anismus - nonrelaxing puborectalis, so i can't expel anything from my rectum and i also have inertia of my small bowel as well. my drs said i should try a loop ileostomy. once i put my mind to it, i decided that if i go for an ostomy, it should be a perm one, not a loop, but my surgeon didn't want to do an end right at first, cuz he wanted to give me the opption of closing it in case i couldn't handle it.

so on July 2010 i had my loop ileostomy done. i'm much happier now with my ileostomy, but i just wish they had removed my rectum and made me an end ileostomy, cause my rectum does produce a lot of mucous and i can't expel it and it's only giving me grief. that is so good that your surgeon suggested removing the rectum in case it produces mucous and you can't manage it. i wish mine had suggested it too.

hope everything goes extremely well for you, best of luck!!
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
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 1:49 PM (GMT -6)
There are a total of 3,004,733 posts in 329,166 threads.
View Active Threads


Who's Online
This forum has 161748 registered members. Please welcome our newest member, Adil.
353 Guest(s), 8 Registered Member(s) are currently online.  Details
alephnull, Mind body spirit, aidanw20, Serenity Now, The Dude Abides, Girlie, Bull101, FamilyGuy