It can be very hard to find good information, and a really fantastic resource would be to find out if there’s a local chapter for the Crohn’s & Colitis Foundation. Here’s a link to see if there’s a local chapter. https://www.crohnscolitisfoundation.org/local-resources . Having people you can talk to, discussing what works and doesn’t, medications that seem to work, food to eat or avoid but most important, the names of doctors and how they are. My local chapter helped me find both my gastro dr and my surgeon, both of whom are really amazing.
Something else to be aware of is that the inflammation caused by colitis or Crohn’s dramatically increases your chances of getting colon cancer. Typically, most people don’t get a colonoscopy until their 50 years old. My mother had ulcerative colitis, and was diagnosed with colon cancer at 47 and died of it at 49. So be aware of it, and don’t worry about colonoscopies. The worst part of it is the “prep,” and you want to be camped out by your bathroom, but it only lasts a couple of hours. Then, you get amazing drugs during the procedure, and it will be fine.
While my mother had UC, I have Crohn’s disease, and had a colostomy in 2010, but it kept getting worse and in 2013 it was reversed and I needed a procto-colectomy with an ileostomy, in other words, my entire colon (large intestine) and rectum needed to be removed. Most people never need that level of surgery, but if you have questions, I might be able to answer them.
Mark
I was passing blood yesterday....which sent me to the ER.
Really scared me to death.