I had UC for 4 years or so before having the surgery and it was absolutely the best decision I ever made in my life. Before the surgery I wasn't living, the disease was in 100% control of my life. I was in the bathroom all the time in severe pain. I couldn't go anywhere and eat for fear I would poo myself.
The first 3 days after surgery were very painful for me, but I still felt better after the surgery than I did before. I am a little over 6 months post op now and I feel great. No pain, no fear, no long list of meds. Life is good. I can go to work, out to eat, on vacation, everywhere I want and I have no fear or hesitation. There will always be some days when you just feel bad (colds, flu, aches and pains) but as far as the UC pain its totally gone.
I do not know when I go in the bag, thats why its worn all the time. I do get a sensation when its full thats when I go empty ( or when I go to pee I just empty then).
I am just sorry that I waited as long as I did to have the surgery. If I could do it over again I would have done it within the first year of the dx, instead of suffering and trying all of those medications which didn't work. Good luck to you in your decision making.
I just wanted to drop in and say welcome to HW.com! I am so glad that you found this forum and are asking the questions that you are. What a great place to be a part of - as you have seen, we are an open and caring group of folks here. Please feel free to ask any questions or express any of your fears. Someone here will be able to help you sort through everything.
I have had an ileostomy for 23 years due to Crohn's Disease. As you can see from my signature below, I have been very fortunate that my CD has been in remission since my surgery. My symptoms in the end prior to my surgery were very much like UC symptoms, so I can say that I do know what you are going through. Unlike you, I had to have an emergency surgery and had no clue that I would end up with a permanent ileostomy. This was pre computer age, so no internet to research or explore options, etc. You are so lucky to be able to find this support at your fingertips.
I am sorry you are in so much pain - I do understand and I feel for you. Pain is so hard to deal with on a daily basis. Please know that a lot of us here have been in your shoes.
The last thought I want to share is that each persons' experiences are individual. I will have to admit that the first couple of weeks post surgery was quite hard for me --- emotionally as well as physically cuz I was so malnourished. I didn't want to look at my stoma or participant in the care of it initially. I really think that if I would have had the support of people, like on this forum, I would have done better more quickly post op.
With respect to the specific questions you have asked:
The ostomy does not smell except when you empty it. Think about it, even a normal person can have odors in the bathroom. There are ways to minimize those smells... I personally use a product called Ostofresh and it is wonderful. Others use Hydrogen Peroxide 2% .. even tic tacs dropped in the pouch after each empty.
An ileostomy is active nearly all the time. You do not have any control of it's output, like you do when you have a rectum and sphincter muscles. Normally you don't usually even know when it is "active" except maybe right at first because it will be a new feeling to you.
The bag/pouch/appliance, whatever you wish to call it, is not noticeable under your clothing. There are many here who wear some of the very same clothes post surgery as pre surgery. Check out this website and actually see some of the folks you are communicating with: photobucket.com crohnsdisease / 6mp3asa You will be amazed!!
Post Edited (tweet) : 2/24/2008 6:47:37 PM (GMT-7)
Post Edited (praying4healing) : 2/24/2008 6:23:02 PM (GMT-7)