Hi Felicity,

Thank you for sharing your story! My goodness have you gone through a LOT! I'm glad that "Oscar the Pouch" has helped you to return some quality of life.

I had the proctocolectomy in two stages. The second stage, which was the actual removal of my rectum, was only difficult because the would VAC I was on wasn't working properly and it hadn't closed my wound properly. Had that gone better, I would have considered it an "easy" recovery (although a little annoying since I couldn't sit for a little while). 

I wish you all the best and please continue to post questions or concerns on these forums!

Saw Dr B, he's planning the surgery as an open one due to "the mess that is your pelvic area". My left ovary apparently has a lot of adhesions from my large intestine. I will be seeing a gynecologist colleague of his so she can look me over, counsel and assist him w the surgery. Might loose that ovary, not super scary, when I went to the hospital for the cyst I told my husband if I have to lose it to let it happen. Sometime in November or early December will see my large interest gone.

I'm scheduled for a scope down Oscars other opening to my large intestine in October. Apparently I have to do that whole oral prep thing, though since I've got Oscar I thought not much of anything goes down to my large intestine... It seems all that will it accomplish is a very unrestful night of constantly emptying the pouch. 

Thanks for the update, Felicity. Good luck with all that lies ahead of you!

Hi Felicity,

Welcome and thanks for sharing your story ( well... not a story.. your life!).

I wish you all the best for your upcoming surgery.  I spent about three and a half years at the 'cure' thing. Now that I have my stoma and things have settled down, its great to get on with just living. You will get there.

( I had UC and have an illiostomy).

I goofed and pressed the wrong button before I finished. 

I keep my positive attitude by delivering food to patients at the local hospitals . It takes 1.5 -2 hours a day 5-6 days a week. When I leave the hospital,  I give thanks to God that I can function as a human being. Believe me,  it's better to give than to receive. And I stopped feeling sorry for myself. 

I got the ok to return to work last week with a 20 lb weight limit. I work in an Elder care facility and have been hugged by everyone since my return. I'm one of their Activity Girls, I describe it as being a professional friend. I love what I do, I get to learn so much history, the day to day stuff. It's helped me feel back to normal and build my strength.

I've always been open about my Crohns and how it impacts me. This is just a new chapter in my travels. I even had a chance to educate a nurse aide in training. She asked about it since she had heard I had one, how it's impacted my life, how to care for it, could she see my appliance. Showed her a pic of Oscar at his most recent change since I was wearing a covered bag. I've been at the facility for 22 years and I'm only the 4th person with an Ostomy that has been there in that time. We just don't see them much.

I'm making Ostomy bag covers like a mad woman after tweaking a pattern to suit. I was going to make some plain black ones as I'm one of those black clothes wearing Gothic sorts... I've wound up using fun Halloween prints, emptied my stash of bright funky fat quarters and other fabric I've hoarded. No see um is apparently not my thing.