wants to take whole colon

Oh Sammies!!

I really am so sorry to hear this!! What you must be going through! I'm assuming you are you having significant problems right now. Shame on your doctor for telling you this over the phone!! And then not give you all the information. Please see him ASAP to find out more about what he is suggesting. Of course, get another opinion if you need to.

I've read posts from many people who talk about the relief they got from temporary and permanent ostomies. If it is necessary, I hope it really helps you too!

Let us know what you decide. Praying for comfort and peace for you!

sammies--take a breath...you are at the right place to ask all the questions you have and read past posts! The ostomy forum has a lot of people that have been in your position and made many different decisions...First and foremost find out what your doc thinks is best for your situation. Second, educate yourself on all the pros/cons and eventual outcome. Third, get a second opinion if you think it is needed.

Most importantly, make sure you have a ColoRectal surgeon and that they are familiar with Crohn's...it does make a difference!

I am a regular poster on the ostomy board, but was diagnosed with Crohn's more then 20 years ago, lived with fistulas and opted for a proctocolectomy...I'd be happy to help with questions.

thank you for the responses and the support. GI called today. Will send me to nationally known doc for second opinion. However he completely agrees with my surgeon---terminal ileum through rectum should be removed. permanent ostomy. I am have such a hard time digesting this. He was very patient and kind on the phone. Setting me up with a patient who had the total colectomy 35 years ago when they had just started this surgery. Wants me to ask her everything and anything. I have had had 25 years of crohn's with no surgery. I didn't think I'd be "here" for several more years. I had never even thought an ostomy was a possiblity for me. Any and all advice is welcome. I read several ostomy board posts last night and a few online articles. Trying to get educated and fast.

THANK YOU!!

Sammies sorry to read your news. I would still want to speak with soneone that has had their colon out recently. I would think alot has changed in 35 yrs since that patient had surgery, at least I would hope so. Inspite of it all knwledge is your best weapon. Read as much as you can and learn. Just don't overload the brain. I would be tempted to select one or two large reputable medical sites and then take it from there, rather than reading from several different sites. Good luck Susie