Princess and Praying,
Welcome to the Ostomy forum, I'm glad you found us. I was diagnosed with Crohn's when I was 28 and was also very scared to have surgery. After 8 years of trying every medication out there, the disease was not under control, so 4 GI doctors finally convinced me to have a temporary ileostomy. I only agreed to it, because it was temporary, and I had every intention of reversing it after my colon healed.
The first thing I noticed with an ileostomy was the ability to sleep through the night for the first time in years. It was wonderful! I used to have to get up several times during the night to go to the bathroom. I didn't realize how sleep deprived I was. I also was able to go shopping without having to go to the bathroom, which was great! I was completely surprised that I actually enjoyed having an ileostomy!
After 8 months, my colon never healed, in fact it started bleeding nonstop, which really scared me. I knew that each year that I held onto my diseased colon, it only increased my chance of developing cancer. I'll never forget asking myself, "What are you holding onto? A diseased colon? Why??" The thought of having cancer and going through chemo was the final deciding factor for me. That's when I decided to make my ileostomy permanent and have my diseased colon and rectum removed.
It was the best decision I've ever made, and I've never looked back. To be honest, having an ileostomy is no big deal and is so much easier than being sick. I am completely healthy now, take NO medicines, and have no pain anywhere. I don't even have to see any doctors anymore! The bottom line is... I have my life back! It's the best feeling in the world to not have to run to the bathroom anymore, wondering if I'm going to make it there in time.
The pouch is so flat under my clothes that nobody knows it's there. I exercise, take a shower every day, wear cute clothes, and work a full time job. I only have to change the adhesive wafer that holds the pouch on once a week, which only takes a couple of minutes. Just peel and stick and I'm on my way! I empty the pouch each time I go to the bathroom to pee. The pouches have velcro
openings at the bottom, so that makes it easy to empty.
Also, intimacy with my husband has never been better. Now that I'm not sick anymore, I actually have a sex drive again! I thought that I had lost it forever, but the illness and medications messed it up while I was sick.
None of us asked for or wanted this disease, but we were given it, and there is a solution, which is surgery. It is completely normal to fear the unknown, but that's why we're here, to help you understand what it's like to have an ostomy. Please continue to ask us any questions you might have, and we'll give you honest answers.
Wishing you all the best,
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)