FREQUENTLY ASKED QUESTIONS
I have had a diffuse colitis affecting my entire colon for many years. What are the tests that I need to do?
In your case, the main risk is that of developing colon cancer. Therefore, endoscopic surveillance should be performed to allow early detection of colon cancer. Even though the appropriate interval for colonoscopy procedures has not been fully determined, it is generally recommended to have a colonoscopy every 12 months when the disease duration exceeds 15 years.
My illness affects only the rectum (proctitis) but does not respond well to therapy alone with mesalamine. Are there alternatives?
The management of proctitis can be annoying and often oral mesalamine alone is not sufficient. You can add mesalamine in topical formulations (such as enemas, suppositories or foam) or switch to topical steroids. Sometimes the use of immune-suppressants is required.
I have been treated for years with azathioprine. What is the risk of this maintenance therapy?
Even after years of experience treating Crohn's disease and UC with azathioprine we still are unable to fully determine for how long the drug could be safely used. Recent studies suggest that if there are no significant side effects initially (such as reduced white blood cells and liver or pancreas damage), it seems unlikely that these would develop over time. However, there is a theoretical risk for developing tumors especially lymphoma over time. The risk seems to be increased when the treatment also includes anti-TNF agents (infliximab, adalimumab or certolizumab). Hence, combination therapy should be used with caution. Current recommendations for long-term use of azathioprine are to avoid it if there is a recent history of cancer and use it at the lowest effective dose and under close monitoring. If you are taking this medication it is important that you see your provider regularly and have labs performed even if you are doing well.
I underwent colostomy with a permanent stoma many years ago. Do I still need check ups?
Endoscopic surveillance is indicated only if you still have a remaining part of the colon (i.e. the rectum) inside your body because this area, even if small, is affected by the disease and potentially subject to cancer. If there is no colon or rectum left, then the disease is considered cured.
I have tried everything but it seems like medical therapy does not work for me. Do I need surgery?
Lack of response to medical therapy, in addition to serious complications and cancer, are indications for surgical intervention. However, talk to your provider about the addition of new biologic agents to conventional therapy, as these may improve response and potentially prevent the need for surgery.