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Regular Member

Date Joined Mar 2009
Total Posts : 192
   Posted 4/28/2009 8:40 PM (GMT -6)   
Peggy..... some of this is for you..... I have read many of your post on here as well as another forum of I survived a sphincteroplasty. I am still running so many things through my head. I had stool that was in my colon that he just had me take a laxative to try to get out. I still have no control, I cant push the poo out. I had my sphincteroplasty in Feb 17th, then my temp ileo on march 3rd. So many have leakages for the rest of my life. I cant stand how it just comes out of me now. I almost would rather have my ostomy for the rest of my life then to have leakage. I go see my surgeon on thurs. The last time I was there he said he didnt think it took and he may have to do it again. Im not sure i want to do that.... that was a horrible surgery. Any suggestions.

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 4/28/2009 9:54 PM (GMT -6)   

I wish I could tell you exactly what to do but you really need to make that decision so that you can live with your decision - only you know how much you can take. That being said, I have to say that I wasn't a happy camper when I woke from emergency surgery to find out I had a permanent ileostomy at age 23. It sucked. I had no idea that was in store for me, or I was just too ignorant and naive at the time!

But I will have to say that I am so happy that I don't have to live with the pain of Crohn's disease, diarrhea, taking an incredible amount of meds including large doses of steroids, and the list goes on and on. I couldn't eat because of the pain and when I did, I'd be in the bathroom all night. What a change in my life now. Yes, I know I have foods that I just don't dare eat, some cause diarrhea (doesn't take much for me), but what do I care.... I have a bag! As long as I stay hydrated. And I can pretty much go anywhere anytime. I can eat a large variety of ethnic foods, and really enjoy going out to dinner. I feel happy and healthy. I am so blessed that my health has been so good. Yep, I've had bumps in the road, a few partial blockages that hurt like heck and adhesion issues. It's always something when you are dealing with the amazing thing called the human body. But overall, I feel well - not sickly or drained or afraid to run to the store in a minute's notice.

Speaking of traveling, I was just talking with a friend, and I told her that since my DH has been diagnosed with ALS, his goal is to make it to UT before he has to have a power chair. We are getting really close to the power chair; so I am fully anticipating him saying in passing one day, "Oh btw, I just bought us 2 airline tix to go to UT day after tomorrow." And all I would have to do is just throw some clothes in a suitcase and grab some Ostomy supplies. The only thing I'd ask is "for how long" so I'd know how much to take! Off we would go. No worries.

So, if I can help you in any way, I would be happy to. But, You are the one that will have to live with your decision. You have great sources of information to draw from, especially with the internet and this forum and your doctors/surgeons. All you have to do is ask the questions you need answers to.

I am so sorry that I can't really help much with the reconnection issues - my resections were all failures due to the Crohn's disease reoccurring so quickly in the rectum.

I wish you only the best. Please be open to listen to whatever information you can gather. Put together a list of pros and cons, talk it over with whomever you need to, and make the decision that is ultimately the best for YOU.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 4/29/2009 11:20 AM (GMT -6)   
As someone who had a temp ileo for 8 years...the "stuff" that comes out your bum is gross !!! I couldn't really control it and didn't really know when it was coming:( It wasn't an easy surgery, but a permanent ileo is more predictable!!

It is definitely a personal decision for more surgery. And, the amount and frequency varies depending on the person. I was able to keep things under control for a while but then the meds stopped working.

Talk to your doc, get his opinion, and if you're not happy with it, get another one. It's not fair that you have to suffer!

Regular Member

Date Joined Mar 2009
Total Posts : 192
   Posted 4/29/2009 6:46 PM (GMT -6)   
Its just scary..... Im soooo afraid to have this ostomy reverse just to find out I am still incontient. Everything i have read has been people with unsuccessful surgeries. Ughhhh so distressing.
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