Posted 8/3/2017 8:40 PM (GMT 0)
Hello,
I am a 19 year old female and I have colonic inertia as well as pelvic floor dyssynergia. I've had problems my whole life, and it has just gotten worse year after year. i started with a ginormous (beer belly looking) stomach at 3 years old. my parents took me to a gastro and she couldnt make a diagnosis but she knew that i couldnt go to the bathroom. we tried 5 years of every possible over the counter and prescription medication with no luck. i had to have depactions about once a month. when she finally saw that wasnt helping, i got a mic-key tube placed to help force the stool out with saline, castle soap, bisacodyl and saline enemas and so on. i did these treatments every day until i was 17, so about 11 years. When i hit 8th grade, thats when it started getting really bad. i only made it to school about 5 days in a month so i had to become homeschooled. the pain became so awful i wanted to cry every time i ate. then i had nausea from both the pain and also from the treatments because half the time the medicines/liquid wouldnt even come out so it just sat in me, taking bloated to another level. we still hadnt come to an actual diagnosis by the time i was 15, so my doctor sent me to ohio (im from california) for specialized testing and thats when i got diagnosed. a few months later, we went back to ohio for a month to get a sacral nerve stimulator implanted. we patiently waited for two years, but unfortunately it was ineffective. so, when i was 17 i got a total abdominal colectomy with ileorectal anastomosis. (small intestine attatched directly to rectum) and i thought would be a start to a new life. unfortunately it was very short lived. i was able to get a job for 4 months then had to leave. i did have trouble right after surgery, but i felt much better than i did before and wanted to live a life. but then it started getting really bad again. i had to leave work to go to the ER the pain was so bad. i was for certain it was an ileus (as i have had one before) but it was nothing. just pain. thats when i knew i needed to leave work. now, we are at our last resort, which is a peristeen pump. i have been doing every day it about 6 months now and i feel like im doing my old treatments again. i am still constantly nauseous, bloated and/or in pain and cant leave the house at all, i developed depression and severe anxiety over the years. even if i feel like im doing ok, my anxiety kicks in that im going to end up not feeling good. my doctor has recommended biofeedback therapy but she said it is only a 50% chance of working and i have to commit to it (about once a week for two+ years) and there is not a clinic close to me so i would have to drive to my hospital thats over two hours away. my last option is an ileostomy. i want to go to school and live but i cant stand the thought of a bag the rest of my life. im just worried about bag leaks, it being smelly, being a stomach sleeper, my own body image issues and what other people will think. im almost 20 and just sit at home every day and try to deal with the treatments, pain and nausea and hope there will be a magical solution. i know ive hit a dead end, but i feel i cannot commit to an ileostomy. anyone who has an ileostomy/colostomy for life, please let me know your thoughts. be as blunt and open as you want, i would appreciate it so much