Need pointers before I get my colon removed

There has always been a cancer risk with jpouchers, since there is a bit of rectal cuff left for continence. The last time I checked the percentages were less than 1% for the chance of cancer post surgery. I think you misunderstood the nurse; they don't have a ward in the hospital for people with jpouch problems, they have a ward for people who choose to have jpouch surgery. Yes, there can be complications post jpouch surgery, there are complications post any surgery. Jpouch surgery is very complex and depending upon how ill the patient is, the risk of complication is higher.

There is no perfect surgery for UC but there is a perfect surgery for you, and that's the one you're willing to live with. Jpouch surgery has a satisfaction rate of over 90%. I've been one of those happy jpouchers for almost 12 years.

Sue

I am two weeks post op from my total Proctocolectomy with a permanent end ileostomy and anal closure.

I had 5 months to do dozens of hours of research to educate myself and get comfortable with my decision. I highly encourage you to go to YouTube where you will find lots of videos on things like bag changes, emptying your bag, all the various ostomy supplies, dealing with skin issues, etc. I learned more there and more here on this board than any other resource.

Other people on this board have commented on the fact that they woke up from surgery feeling free of the UC and I can say this is absolutely true. Though you are in a great deal of discomfort right after surgery, there really is a sense that something magical has happened.

Also, its so important that you have a good gut feeling about your surgeon. I hit the jackpot with my surgeon who it turns out is known for her ability to do procedures that are least invasive. Another surgeon told me my surgeon is one of the rare ones that can think on her feet and deal with any situation that comes up immediately. Right before surgery, I asked her to please give me the prettiest, the best, the greatest stoma she's every created. And guess what.....she did. Everyone who's seen it that knows about these things has said I've got the Cadillac of stomas.

If by doing your research, you can take the fear out of the unknown, you will be so much better off. There is no such thing as asking too many questions and be sure to focus on a good outcome because though many people do experience some difficulties, most ostomites do just fine.

I know I am very new to this, but I feel very optimistic about my future and am excited about getting my life back once I am fully recovered. Keep us posted as you go forward. I have a slogan that I have adopted just for my situation.......Trust Your Journey.....and I do.

actually lady vic is correct. There is a dept at CC totally devoted to people with problematic jpouches. Thing is.. they are the place where people with problematic jpouches from around the country AND around the world visit to get help. Also she is correct.. that they are recently discovering cancer in jpouches. The cancer they are recently discovering is NOT simply located in the rectal cuff. It is actually in the jpouch itself. This was NOT a known fact several years ago. It is VERY important to know this now as anyone with a jpouch connected or not, should be getting scoped on a yearly basis.

As for advice.. let an experienced ostomy nurse deterime the stoma placement. They will be the best at that. Only other thing I can tell you, is to be confident about your decision, and you will then figure out how to work with your new self. Good luck lady vic. UC since 2002 is a long time. You will feel so much better once that diseased colon is out of your body.
happy thanksgiving.

desertsun01 who was your surgeon?
I am having Tracy Hull at Cleveland Clinic.

For those of you stressing to do my research, just to ease your mind I have been thinking about the surgery since 2007 and have been going back and forth since then as I read & research about it. It is scary when you see some of the things that can happen but I have found that every year my disease has gotton worse and I'm to the point I just can't take it anymore. I got to the point where I believe in life after death but even if there isn't a peacefull sleep for eturnity sounds better than all this pain & bull crap.

Someone told me in another post that you will just know when you are ready and there will be know doubt and she was right, I was almost sure last month but now there is no doubt in my mind I want this.

Over the years I have foun little tricks to make getting scoped easier (about the prep) so this is what I'm looking for regarding the surgury.

I chose the bag route bcause in the end I want the least risk of further complications & I want to stop taking all drugs and the bag just seams the best idea for me. Those who have chosen the J-pouch I'm sure that was the best for you for what you wanted from your surgery. I'm glad there is options.

I agree with others...do your research and learn everything you can...knowledge is power. Being educated about this is the best thing you can do to help yourself.

Make sure you are confident with your surgeon. Ask how many times he's done this, see if you can talk to anyone in your area at a support group, etc.

When you have the stoma nurse mark you, make sure she observes you sitting, standing, laying, etc. and wear pants with the waistband where you like it.

You sound like you're in the same place I was when I had my surgery...totally ready and doing as much research as possible. I think those two things were the key to my good attitude. Two and a half years later I'm still having "firsts" where I see another benefit of having had the surgery, and I'm so thankful for my ostomy.

Let us know if you have any other questions and I hope you can start feeling better soon!

Lady Vicodin,

I too chose a permanent ileostomy even though I was a candidate for the j-pouch. I felt that the permanent ileo would be a better fit for my lifestyle and the results have been everything I had hoped for. I am now two years out of surgery, and most of the time I hardly even notice my ostomy. It just feels like it is part of me and it has not stopped me from doing anything. I hike, rock climb, backpack for multiple days in the wilderness, run, swim, travel, wear all my normal clothes and eat most foods. Life is very good and I am thankful for my ostomy every single day.

In my opinion, these are the three things that have led to me to be very happy with the results of my surgery.

1. Get your surgery with a highly recommended surgeon. Sounds like you already have this one covered.

2. Get a good stoma placement. Wear your favorite pants to your placement meeting. My stoma nurse recommended having a stoma placed below the belt line so that my pants waistband would not press on the stoma or cut off flow to the pouch. Mine is about two inches below my belly button and two inches to the right, but it is going to be different for everyone depending on their build. I love to backpack and rock climb too, so I brought my harness and backpack to that meeting too. I know another person who is really into biking and brought their biking clothing. Do whatever you can to get a good placement for your clothing and activities. This is super important because your stoma will be permanent.

3. Do not get a flush stoma if it can be avoided. My GI nurse and doctor really emphasized this when I decided I wanted surgery. So, I asked my surgeon to make sure to create my stoma so it stuck out over an inch. He confirmed that he always tried to make stomas that length as it helped prevent leaks and skin issues, but it felt good to ask him anyway just to make sure. My stoma ended up being just shy of 1.5 inches tall when the swelling went down. My stoma works really well at this length. Stool never gets pumped under the wafer and the longer length points my output towards the bottom of the pouch. Due in large part to my stoma length, I have only experienced one leak in 2 years, and that was a week after surgery due to wound drainage compromising the adhesive on my wafer.

Best wishes for your upcoming surgery!