FAP surgery concerns

I had a temporary ileo with my first surgery 33 years ago. Undoubtedly, the surgical techniques and ostomy supplies are better now. My recommendations are to have an ostomy nurse mark a preferred location for the stoma before surgery and get good instruction on ostomy management before leaving the hospital. Also, ask for sufficient supplies to take home with you and feel free to contact the nurse later if you have any problems or questions. The UOAA Discussion Board is also a good resource for ileostomy matters. While a temporary ileo does not always give you a good ride, it is manageable and allows time for your new pouch to heal. Think ahead to good times when the ileo is gone and your quality life has returned. Best of luck with your surgery.

I can empathize with you about the temp ostomy. Best advice, probably do what Bill suggested and check out the UOAA site..........also see if the docs have a good ET nurse you can talk to ahead of time.....that may help too.

I will say, for the record, I hated mine but managed and got thru it.

Hello,

I had a temp ileostomy for 2 years. I was like you when I first found out I was going to have it. But you adjust! And speaking from my experience, I thought it would be this scary and gross thing but it wasn't! I also really enjoyed not having the urge to use the bathroom with the ostomy.

The suggestions above are great. I would like to mention that if you call the ostomy suppliers, they send free sample of their products! I remember I called Convatec and they sent me different kinds of bags and wafers so that you can see what type works best for you! I live in Canada but I'm assuming they do the same in the states.

Follow the dietary instructions after surgery and ask your doc all the questions on your mind (and ask us too if you need advice!)

Zee

Thank you everyone! It's been 1 1/2 weeks. So far going alright. Surgery went very well and recovery hasn't been too bad. The worst is not working and keeping my activity low. The bag is coming along. I did get a home care ostomy nurse, who has been wonderful and helpful also. Counting down the days until I'm back 100%

I had an ileostomy for three months about 25 yrs ago. I thought that I would be freaked out also but it kind of reminded of a tongue so it wasnt so bad. My biggest issues were the seal around the ostomy for the bag would leak and intense itching. One thing I would recommend is making sure the equipment is replaced often. I had a clip give out in public with a full bag! Hopefully ostomies are more user friendly nowadays.

My son was diagnosed with FAP at 17, had his colon removed then with no issues.  In October 2014, his rectum was getting polys with low grade dysplasia so he had to have his rectum removed and a temporary ileostomy for 3 months before his take down surgery.  In the beginning it was rough because he would have leaks at night until he learned how to avoid that.  He is also 20 years old so he was pretty self conscience about it.  His ostomy nurse was fantastic.  He had his take down surgery in April at the University of Chicago and so far everything is going great.  He has had some issues with scar tissue causing the connection to get smaller but that was taken care of.  Something to ask your surgeon before you get your J-Pouch surgery -  will he handsew the connection?  This is highly recommended for FAP patients.   We were also told that the FAP patients rarely have problems with pouchitis or some of the issues with the pouch.   Anyhow, good luck!