KAP-I totally agree with Cecilia. An ostomy is much better than living with an illness, if there is no other (or better) alternative. I also have crohn's, and have had many different problems along the way. This isn't my first ostomy...I had my first one (which was temporary) reversed the moment my surgeon said I could and was back in for surgery within a few months for #2! I did finally take the plunge and have a proctocolectomy in February, so it's permanent now. With the ostomy I finally felt good, can go out whenever/whereever I want, do sports, ride a horse and travel. The only limitations are the ones people put on themselves.
While my diagnosis was different from yours, your life could be just as good as mine is now. Everyone is different and comes to their conclusions on their own time. I know mine took many years and my doctors didn't push me, they let me come to the conclusion. I am 40 now, was diagnosed at 20 and have had an ostomy for at least the last 7 years. I would suggest meeting with an ET nurse, learning about the products and even meeting an ostomate if possible. My hospital has volunteers that work with the ET nurses and meet with possible ostomates to help answer questions.
I wish you luck in any road you take and like HisWill mentioned, we are here if you have any questions, just ask!
KAP, I can relate to what you're thinking. I knew someone with Crohn's who was in remission while on a vegan diet, but when I tried it, it didn't help me. Hopefully, something will work for you, but if not, you know that surgery is always an option.
You're doing the right thing by researching what it's like to have an ostomy. Then, you can weigh your options and decide what's best for you. If you have any questions, please ask, and we'll do our best to answer.
Post Edited (KAP) : 5/4/2008 6:06:14 PM (GMT-6)
KAP, I'm sorry you've been feeling sick this weekend. You're in my thoughts and prayers.
I've been married 10 years and also chose not to have children, because of my illness. My husband has been very supportive and is so happy that I'm healthy again, which has really helped me accept having an ostomy.
You had great questions! To answer them, an ostomy does not hurt, and they make wafers for people with sensitive skin. The bags don't make any noise, but sometimes my stoma will sputter a little first thing in the morning while I'm sipping my coffee, but I'm the only one who hears it.
There is absolutely no odor, except when you empty the bag, but that can be avoided by putting a capful of hydrogen peroxide into the bag when it's empty. If you do that, then there's no odor when you empty.
I empty it every time I go to the bathroom to pee, which is about 5 or 6 times a day. The bags have velcro closures on them, so all you do is sit on the toilet, un-velcro the opening, let it empty into the toilet, wipe off the end, and re-velcro it. It's that easy!
I change my wafer once a week, and it only takes a minute to cut a hole in it and stick it on. The bag then clips onto the wafer. The bags have a cloth, flesh colored covering, so you can't see the contents. I sometimes wear a mini bag, which is good for intimate times with hubby.
Irrigation is for people with colostomies (I have an ileostomy). From what I understand, they can give themselves an enema, empty the contents of their bowel, and not have to wear a bag.
Hope that helps!
Sorry for the delay in replying. I really appreciate you answering my questions! They helped encourage me even more.
A few more questions, if that's okay? How big are the bags? Do they come in different sizes?
And what exactly is a stoma and what is a wafer, and how big are they? Sorry to bombard you, but I really have no idea about any of this stuff yet. Thanks so much for answering everything. Also - would it be okay if I email you sometime? If not, I would understand completely and can keep posting here. But just thought I'd ask.
Take care and have a great day!