Bob, sorry to hear you've had such a difficult year!! I hope this will be a start to a better one! First and foremost make sure you TRUST your surgeon. Ask as many questions as you need (which I am sure you know that already). I had a full proctocolectomy and having the rectum removed was the least painful! Like Summer already said, the incision is the most uncomfortable, but that gets better on a DAILY basis. I did notice my "insides" move to find a new home but it was never painful, just noticeable, and it calmed down shortly after surgery. I already had an ileo so I didn't have to do any prep but I am sure it would be just like any other...gross!
As far as pain meds go, I have a high tolerance, but I still used the maximum dose for 4 weeks post op. Once I had my staples removed it got easier, but I still needed them to stay ahead of things. At four weeks it was like a switch went off and I only needed them once a day and then none at all...for me it was that quick!
Some people do have post surgery complications...I don't want to concern you...but you should definitely understand that. They usually come in the form of an abscess or adhesion but no one is the same. Just know they can happen, ask your doc, and know what to watch for (fever, vomiting...).
As far as an ileo, its one of those things!!! I, personally, love mine! It wasn't my ideal way to go through life but I HAVE A LIFE and I am thankful for it. Go on to UOAA.or and check out the manufacturers websites. They have a lot of information (some have pics or videos) and you can see the products out there for ostomies. Remember that the stuff they use in the hospital is not very pretty...opaque bags are the way to go
I hope we can answer all your questions. The best thing you can do (as you said) is be calm for surgery. I am also one of those people and I love this site for helping me prepare mentally for my surgery...nothing was a surprise...I just had a few set backs.
It's good to hear that you'll get rid of that pesky UC! My husband and I were a little freaked out by the thought of a "bag" at first. We're both in our mid twenties and the thought that the ostomy might be permanant was scary. He had UC for 8 years and ended up having Toxic megacolon and not getting a choice (or a chance to prepare) about the surgery. Life has been so much better since he got rid of his colon. I cannot express how much better life with the bag is compared to his UC. It's the greatest.
He recovered very quickly from his surgery. He was sitting up and walking around within a few days and 4 days after his surgery he got to eat solid foods. The only thing that kept him in the hospital longer was he got a blood clot because of a pic-line he had in his arm.
He didn't seem in much pain after the surgery. He did express how much he liked his morphone button though. :) I would say he has about an average threshold for pain and he didn't take any of the oxycontin they presribed him. Occasionally some Tylenol. He was back to work less than a month later. Thankfully there were no complications.
It takes some time to figure out how long your bag will go before you need to change it. We've had a few accidents while at a friend's house and in the middle of the night. I would think that is the only down side to the whole thing. We solved those problems by setting an alarm halfway through the night that he gets up and goes to the bathroom. We also keep an extra bag in our cars just in case of a leak.
I have never noticed any kind of a smell related to it either.
After what you've been through I think this surgery will be a piece of cake. You won't even need to get up to go to the bathroom after the surgery. No more bedside commode!
Bob, welcome to our little corner of the world. I'm sorry you've had so many troubles, but am thankful there's a permanent solution to your UC problem. After what you've been through, an ostomy will give you freedom from so many things.... from having to be near a bathroom, from being sick, from having to take any medicine... the list goes on. Soon, you'll be UC-free!
Having an ostomy is so much better than being sick. I honestly forget it's there! Going to the bathroom the natural way is so overrated, especially after going 20+ times a day! I've been there and know how awful that is. Plus, no more tooting!
The surgery is no walk in the park, but it's only for a short time. They'll give you excellent pain meds to get you through, and you'll be up and at 'em in no time! Good luck with your appointment, and feel free to ask us any questions!