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Posted By : heatherbci - 8/3/2017 1:29 AM


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 has just gotten worse year after year. i started with a ginormous (beer belly looking) stomach at about 3 years old. my parents took me to a gastro and couldnt make a diagnosis but she knew that i couldnt go to the bathroom. we tried 5 years of both over the counter and prescription medications she recommended to us with no luck. i had to have depactions about once a month. when she 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 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 surgery 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 been through this or something similar, or 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

Posted By : heatherbci - 8/3/2017 1:33 AM
*biofeedback therapy not surgery, my bad lol

Posted By : (Seashell) - 8/3/2017 3:15 PM
I have a permanent ileostomy and am not shy to talk about life with an ostomy.

I have had my stoma and ostomy for about 6 years. My stoma is well behaved and low maintenance in terms of skin care and changing of the pouch. I rarely give notice to my ostomy. It is, quite simply, no big deal.

No one would know that I have an ostomy by looking at my appearance.

Modern pouching systems are quite advanced. Poaching systems are completely odor free and made of elastic polymers that conform intimately to the skin. The result is a low-profile ostomy pouch that is so unobtrusive and you forget that you have a pouch on.

I empty my pouch about 6 times a day. The ileostomy output is the consistency of chocolate syrup. It takes less than a minute to empty my pouch into a toilet and be on my way. By emptying the pouch frequently, you do not walk around with a full pouch of "poop" on your abdomen.

Ostomy pouches come in different sizes and in different styles. There are hundreds of variations of poaching options. Hundreds. Finding the optimal pouching system for you is a process of trial and error. But when you find the ideal pouchinf system for you, life is good. In the 6 years that I have had my ostomy, I have had only a handful of leaks or full blow-outs. Leaks and blow-outs are a rare occurrence. I use the Coloplast Mio line of ostomy supplies. I consider my poaching system to be almost bomb-proof.

Life with an ostomy is a good quality if life.

There are scores of younger individuals who have permanent ostomies. Teenagers and young adults with Chron's colitis and ulcerative colitis often choose an end ileostomy to improve their health and life.

An ileostomy should not limit you in any manner. People swim, run, hike and back-pack, practice yoga, attend concerts, pursue graduate school and professional careers - all with an ostomy.

For all of the varied health challenges that I have, my stoma and ole ostomy is at the bottom of my list of concerns. My stoma is actually quite cute. It looks like a small button on a shirt sleeve. It is less than 1 inch in diameter sitting to the right side of what was my former belly button.

Reading through your post I was struck by your narrative of dispair and despondency through your perceptual lens of an intestinal tract that has not been your friend. I think you will find that an ileostomy would give you a new lease on life. A quality of life.

I consider my ileosotmy to be a friend. I am hear to say that my life is better with my ostomy.

The United Ostomy Association of America (UOAA) is a non-profit, 503-C organization whose role is to support to those with ostomies and to promote education and knowledge of ostomies. The UOAA has an online support forum that is active and vibrant. I encourage you to visit the UOAA web site and support forum. Ask questions and "meet" like minded individuals with ostomies. There are current members participating in the forum who have ostomies due to colonic inertia and pelvic floor limitations.

I am grateful to my ostomy every day. Life is full of challenges. It is how we approach and deal with challenges that determines our quality of life in adapting and coping to change.
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : heatherbci - 8/3/2017 6:27 PM
Hi Karen,

thank you for your sweet and helpful reply. i think i am going to attend a support group to get more advice before making the big move. i believe an ostomy will give me a new chance at life, and am just worried that the potential downsides will take over my life. but im realizing that its better than having extreme limitations and pain every day. thank you again and i wish you nothing but good health and happiness!

Posted By : Alcie - 8/4/2017 4:08 PM
I only had a colostomy, had an aunt with an iloiostomy. There's a big difference. Iliostomies don't stink.

The advances in bags and everything have been amazing since I had mine. Come over to the ostomy group on the forum! You will find loads of help, advice, friends.

You are doing things right - investigating before making the jump and going to a support group. I hope you find happiness in your group! I love my breast cancer group and friends in this forum. Friends and family can only take so much information and expect you to be "cured" of whatever the ailment is. They are still friends and family, but you need people who will listen to your woes week after week, month after month, year after year! I've been this forum and my support group for 8 years. By now I am as much help as the one getting help.

You've already been through more than I can imagine. I wish you all the best.

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