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Facing the decsion of getting whole colon out and living with bag for rest of life

Fri, March 07, 2014 7:21 PM

I am 26 have had crohns since 5th grade. Was really healthy on meds up until a year ago when my health started to get worse. Im at the point where no meds are working and my colon is really messed up. I just want to know pros and cons of this surgery. How do you feel now? Was it worth it? Are you happy you got the surgery even though you have to manage a bag for life? Its scary, but i know it could really change my life for the better too. Please let me know your thoughts, especially if you have had this surgery and are currently living with a bag for the rest of your life.

Thank You

ggross
Joined Mar 7, 2014

Fri, March 28, 2014 3:47 PM

Reply posted for angie99353.

Thank you for the reply means a lot

ggross
Joined Mar 7, 2014

Fri, March 28, 2014 3:21 PM

Reply posted for ggross.

Hello!

I am nearing my 5-year anniversary of being colon-free. Had the full ileoanalanastomosis (J-pouch) surgery in 2009. It was a two-surgery process that involved having temporary ileostomy.

Like you, my colon was a wreck (my surgeon actually used the word "nasty") and medications were ineffective.

I absolutely love life post-surgery! And absolutely would choose it again if given a choice.

Make no mistake, the surgeries and recovery times were not easy, and life is different post-surgery. But I now have my life back: I no longer worry about when my next flare will be, I am not in pain, I do not fear the bathroom, and I have resumed my healthy lifestyle (exercise and training for a half marathon).

For me, frequent bathroom visits are still part of my life. Although I do not have the sense of urgency that I had with UC. I also struggle with dehydration, and I have not found the magic cure for that - although relocating from living in the desert to drippy, humid Seattle has helped! Planning meals and activities has become necessary - certain foods flow through me faster than others and with time I have learned how quickly or slowly things digest. This is important because this will affect activities post-meals (for example no long walks on the beach without a restroom nearby after a salad, which goes through me at lightening speed). After a few months, this meal-activity planning became second nature and I no longer have to think about it too much.

I am so happy with my surgery choice. I had my surgery at an excellent facility with an excellent doctor and I've had a very good outcome. I am so pleased with my decision and am so glad to have my life back thanks to surgery.

Best wishes to you in making your decision and may whatever you choose do well for you.

-Angie
Seattle, Washington

angie99353
Joined Jun 30, 2011

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