Colectomy/Surgery Questions

Hello,

Long story short - I have had Crohn's disease for over 3 years now (along with a temporary loop ileostomy) and it is primarily confined to my colon. I have had numerous fistulas and abscesses with surgeries that go along with healing them. I have failed Remicade, Entyvio, Imuran, and am now on Humira/weekly with no improvement of my colon. My gastro doctor is advising that the next best step would be to complete a colectomy and remove the colon and have an end ileostomy. With completing this surgery, he is confident that I would no longer need Humira moving forward.

One thing that worries me is if I have this surgery and no longer need medication, what happens if the disease spreads to my small intestines. Has anyone had a colectomy and no longer needed medication? How were the results? Has anyone had a colectomy and the disease spread? If so, what is the medication plan if that is the case?

Sorry for all of the questions, this is a big decision in my life and would like to hear other opinions.

Thank you all!!

+1 to what ASellers said.

I have a similar type of disease (have a temp ileo going on three years), but I have had surgeons that have said the option you present is inevitable, as well as those working on minimally invasive surgical procedures leveraging stem cells. Ultimately, it is your decision as to what feels right.

Personally, I decided I had other potential treatments (medical and surgical) to try to before I made that permanent decision. I am fortunate to have supportive family, friends and the ability to travel to try new treatments (which I realize isn't always the case).

Weigh your options. Don't make anyone make you feel rushed into anything. Remember it's your body and you know what's best for you.