Dee, YES, I am keeping the ileostomy. I plan to have another surgery in June or July to remove the rest of the colon and he will then give me a permanent ileostomy. I have also developed a parastomal hernia and he will repair that at the same time.
Do you have trouble expelling bowel movements? Because that was my biggest complaint and the thing that left me with a serious quality of life issue. My entire life revolved around taking laxatives and sitting in the bathroom for hours each and everyday....YUCK....I worked, slept, and sat on the toilet. That was my life. My family had to speak to me through a locked door. And I am a mom to 4 kids and this is how we lived for YEARS!
I could barely eat food and at times could not even sip water. I stayed so bloated that I looked pregnant. As a matter of fact, my stomach stayed bloated for so many years, that my skin is stretched out and my now unbloated stomach hangs down. It is gross. I also had to sleep sitting up because I suffered such intense heartburn and nausea.
I am now a new person. I hardly ever feel bloated and NEVER look bloated, My stomach stays nice and soft
and flat. I can eat food now and do not have to limit fluid intake. I can sleep laying down. I walk 4 miles a day everyday and I have found I actually like exercise. I quit smoking the day I had my surgery and have no desire to start back.
I actually care about myself now. I think before my surgery that I just could not imagine, nor did I want to, live to be an old woman. Living my life with my bowel issues was no way to live and I, at times, even felt suicidal.
Taking care of my ileo is a breeze compared to going the "regular" way. I get more down in one day now than I did in one week pre-surgery....
Oh yes, my doctor removed some of the rectum and performed a rectopexy. So, did it help? Maybe a little. I can now expel 50% of an enema, but I still can not push down to rid my rectum of mucous WITHOUT an enema. I can not push down for some reason????? My doctor thinks I may have some type of nerve damage from so many surgeries. I had 2 pelvic prolapse surgeries, 2 anal fissure surgeries, and a hysterectomy.
What tests have you had? What are your symptoms?
My closed loop ileo looks like an end ileo. It has 2 holes, but is round like an end. The end has only 1 hole.
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.