UOAA Discussion Board

Hi all,

I've been reading your stories for a few days now, since I discovered that there might still be an answer for my current situation.

I've had colostomy as a child, about 10 years back got appendicostomy (ACE). I'm now in my 30's.

I’ve been quite happy with my ACE. I irrigate every other morning only with lukewarm tap water. Works fine, takes time about an hour or so. But occasionally, every other week I would say, those late returns blow everything. I get soiled clothes, plans or work get interrupted or put behind. It’s really unmotivational.

I’m not happy with my control and quality of bowel management. My biggest problem is my incontinence and also partially ACE irrigations outside home. I can’t hold liquid or loose stool at all. I’ve been starting to be afraid going out and about without knowing where’s the nearest toilet. When with my friends I’m anxious about needing the toilet for too long. Also having no continence at all, those couple of accidents in the public have left me feeling really ashamed and humiliated. I’m tired of thinking what clothes to wear so my paddings in my pants won’t show.
Me and my husband would like to live active life. I’d like to go to gym and maybe pilates. We’ve lately discovered cycling and our dream would be conquering those dusty roads of Middle and Southern Europe! But I’m still not ready to make it with my ACE. It’s really routine dependent. I irrigate in the morning, go to work, use my spare time after and so on, but alas, when something too exciting is on view routine breaks and I have to bring it back up again. Not to mention my spirit.

So when I told you about how I’ve been considering an alternative, here it comes: permanent colostomy. I know it might sound frantic, aren’t stomas to get rid of and ACE considered to be one of the best solutions for fecal incontinence. Well, what I’ve learned from here, here are many who feel that stoma saved their life and improved quality and possibilities of it drastically!

So I would keep on with my irrigations, use patch over stoma and when going for longer trips I’d take pouches with me.

I understand if this way how I talk about designing my operation and everything being magically better at once sounds like I’m playing with serious things.

Under no circumstance I’m not to make anyone angry or underestimate everyone's personal life and choices. I’m admiring all of your courage when you are experiencing life threatening situations and severe pains and procedures!

I know this might not work. Maybe I don’t have enough bowel. Maybe my bowel refuses to work. I’m familiar of risks of blockages, adhesions, hernias, mucus and phantom pains if I get my rectum sewn shut. This is not threatening my physical but my mental health.
I think I’m justified to have meaningful and happy life filled with hope and faith for the future. And now I feel my current situation is standing on its way.

I’m so happy I found this place! You have already given me huge amount of hope, courage and information. Thank you all, you’re wonderful!

Sincerely, Pocket Full Of Life

Just wanted to say Hi and welcome. I hope what ever you choose to do works out for you. I have a continent urostomy that was created in 1992, prior to that I had an ileal conduit which only caused me trouble. I love my internal pouch. judith

I had an iliostomy for 2 years. I had so many blockages, but I did not irrigate all the time and give so much attention to detail. I belong to a support group which meets monthy and their experiences have been invaluable. I found out about a BCIR and wanted it. I was a candidate. My doctor, however, gave me a K-pouch, as he stated that was the best way to go because of scar tissue etc. He found this out when he went inside and I trust he did his best for me. I've had the pouch for 2 years now and other than a few issues with pouchitis (bacterial infection) have been tremendously happy with it. I take an antibiotic when I'm in discomfort and it has worked out. I intubate (extubate?) about 4 times a day and have no bother with travelling. The products are easy to carry and much less cumbersome than having an external pouch. I watch my diet -- no roughage -- and make substitutes for things. Large items like pills, I chew up. I drink fruits and vegetables in the form of juice. I recently found chewable vitamins, etc. Most medications come in liquid form. I miss popcorn and salads, but it is a small price to pay. I wear a stoma cover over the hole in my belly and go to the beach a lot. It is so freeing. I would advocate an internal device far above the other ostomy appliances. My only gripe is that I live in a rural area where the medical staffs are ot familiar with the care and usage of an internal pouch and my doctor is 3 hours away by car. I was fortunate to find a physician that close, and he is available by phone 24-7. He calls me back almost immediately and even prescribes over the phone. I'm very happy with my K-pouch.