Surgery Finally Scheduled

Hello,

My surgery finally (after like 6 weeks of waiting and calling) got scheduled. I will be having a proctocolectomy with end ileostomy on December 7th.
I am nervous, scared, excited, and a whole bunch of other emotions and feelings.
I am getting worse each week and am looking forward to having relief from both UC and all the meds I'm on.

I'm a bit worried about leaks, bag failure, how my body will respond, and a bunch of other things I'm sure I don't know I should worry about yet... lol

Prayers, stories, tips are much welcomed.

Stay positive. Leaks happen, but they are the exception rather than the rule for most people. And bag failures are quite rare. Just establish a routine and stick to it. For me, some of the biggest things to get used to with an ileostomy were changes in eating habits and a familiarity with my bathroom I never had before. And being a bit inside out, of course. 😄

Keep us apprised of your progress. There are lots of folks here that can offer real advice on most anything you can ask about an ostomy.

Daniel

Thank you for your response. It's much appreciated!

Best wishes for a successful operation and a speedy recovery. To me, the waiting is harder than the actual procedure. There is a bit of a learning curve, but with a little time, you will master it just like the hundreds of folks on here have. 😁

Try not to worry about failures and leaks at this point. You're going to do fine. There is support in this group to reach out to when you need it. Best of luck on your upcoming surgery.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

G-Day JustMe, like you, I started this journey because of ulcerative colitis. JustMe, you will get to love your stoma and say goodbye to UC. I will be thinking of you on your journey, and we are all here to help. Regards, IGGIE

It's normal to be nervous, but having major symptoms now can help make the surgery a relief. I had a standing commode next to my bed while waiting for mine. Every time I painfully sat down, it affirmed my decision to finally have the surgery. Try not to worry about leaks now - Daniel is right, they happen, but they're not the rule. Think about the sweet relief from symptoms that you'll have. The waiting is the hardest part 🎶. Best of luck, and we're here for you!

Hi RLB, I was in your shoes about 40 years ago, sick from UC, but I was tired of doctor appointments and drugs, especially prednisone, and looked forward to surgery but was still nervous. Back then, there was no internet and its wealth of information, and no ostomy nurses to help figure things out. I was given a book on colostomies and was told they're almost the same as ileostomies. On the third day, a nurse wheeled in a cart with supplies on it and told me I had to get up, shower, and change the pouch; that was the extent of my training, a pretty steep learning curve.

Wishing you a speedy recovery from the surgery. Try not to worry about anything in advance as most things may not apply to you. Ask questions here and watch YouTube videos. All of my ostomate knowledge has been acquired this way. Moana and I are doing great, and soon you will be too. Best of luck!

Terri

We all shared your emotions pre-op. Unfortunately, the only thing that will relieve your anxiety is to have the surgery. All those things you are worried about are rare, if they happen at all. I forgot what it felt like to feel good. Focus on celebrating getting your life back.

Good luck, take it easy and slowly, and I wish you a great recovery.

Leaks can and do happen. It can take some time to find a bag that fits best and works best for you, so take your time and know it can and will get better and easier over time. There's lots to learn and adjust to, but before you know it, it'll all become routine.

Best wishes,

@JustMeRLB

My first post on here actually, I'm a recent ileostomy patient. I have had multiple bag failures at work, which was embarrassing. Literally poonami. It happens. Seals go Google and get free samples then put on your prescription.

There are loads of different types to try.