Ilestomy Scheduled for Early November

After 7 years of UC and currently on weekly shots of Humira and also Imuran, I will have surgery in Nov. to remove the colon, rectum, close the anus and have an end ileostomy.  I am almost 61 years old and other than the UC and the fatigue I generally feel, I am in good health.  Also, have had no prior abdominal surgeries but have had 2 C-Sections so I hear that's a big plus going in.  The surgery will be done laporscopically and robotically....a procedure that my surgeon is rated 7th in the state for and has done hundreds of them.  For the past 3 months I have been reading the Ostomy posts on this site and gotten some very helpful information, but as you can imagine, I still feel like I am stepping off into the unknown and am feeling anxious and scared.  It seems like there are lots success stories here, but also many who end up with on going complications so I have just a few questions (more later I'm sure) at this time for those who might find the time to help me out.

First - I am not a slim person and have a "pouchy" stomache.  Will it be hard to place the stoma so that I get good placement of the bag and good adhesion ?  I do have an appointment 2 days prior to surgery with a WOC nurse for placement and education but thought you all would have some good advice.

Second - Since I will be getting the Barbie Butt with the surgery, what can I expect ?

Third - Please oh please, what truely are the best ostomy products out there ?  Should I be sending away for free samples now (before the surgery) ?

Fourth - What really is your best advice to post surgical recovery and living the rest of your

life with an ostomy ?

Thank You in advance.  Everyone on this board is so brave. I hope I can be too.

 

Welcome Desert Sun. You are brave to even post here, and I think if the rest of us are brave, it's because we had to be, not necessarily because we started out any different.

Some thoughts:

1) You'll probably want a convex wafer. I was very slim for my surgery due to IBD, but afterward I put on some weight and my belly was soft. I had some leaking issues, but when my nurse switched me to the convex, they stopped, and my stoma is plenty long. Usually end ileos are easier to manage than loops.

Getting a good ostomy nurse is critical. Bring clothes you like to wear to the appointment, and be sure to discuss your concerns in advance. You can also ask for a sample bag and if you want to get the feel in advance, fill it about 1/3 full with applesauce. See how it sits.

2) The butt wound is the worst part of the recovery for many of us, but a lot of people heal very well and quickly. It's hard to say what to expect exactly. I had some issues... I see that you don't have prednisone listed, and if you haven't been on it, that's very good for your healing.

I found sitting on the toilet to be the absolute worst for the butt wound. I got something called a pstyle that let me pee standing up, and that helped a lot.

You won't be able to sit directly for a while.... will have to lean on one butt cheek or not sit at all. If you have a reclining chair, that can be very helpful. It's also good to get an inflatable pillow (waffle is one kind -- they gave me one at the hospital; you can also get them from a medical supplier, as a wheelchair cushion). Don't get the donut kind as they spread the butt cheeks.

3) There are no "best" ostomy products, as different things work for different people. The big manufacturers are coloplast, convatec, and hollister, and then within them are a lot of choices -- the biggest choices are convex or flat (you'll probably want convex) and two piece or one piece (personal preference). I had the visiting nurse get me samples at first and then signed up with edgepark, but it's probably not a bad idea to get samples in advance. Hollister and convatec have starter kits where they will send you various things (travel cases etc).

Also the pouches come in clear or opaque. They make you wear clear in the hospital so they can see your stoma and output; you might prefer opaque later on (so you don't have to see your stoma and output....)

4) Advice for recovery: a)walk, walk, walk -- it will get your intestines going and b) chew, chew, chew.... at the beginning your stoma is swollen, and you have to be careful and only eat low residue foods and chew them well. Also you need a lot of protein to recover from surgery, so protein shakes are a good idea, and also be sure to drink a lot of fluids.

Also know that at first your output will be green slime that smells awful. That's bile, and it doesn't stay like that. Your stoma may be very noisy too, and that tends to settle down.

As for the rest of your life, you may find that you are surprised at how great you feel.... I was sick for so long that I really didn't realize how tired and sick I was all the time. This surgery gave me my life back. Most of the time I don't even think about wearing a bag, and it takes me maybe 10 minutes twice a week to change it, and I spend way less time in the bathroom than I did in my ibd days.

Feel free to ask more..... people were so generous when I was at the stage you are, and it's nice to now know the answers to some questions...