Question: My daughter has been diagnosed with Crohn's disease for the last 20 years. Recently, after spending 11 days at Cleveland Clinic, she was told she has ulcerative colitis and should have her colon removed. At the age of 39, we would like to see if there is anything available besides the surgery. Since both diseases are treated in different ways we need to know for sure what she has. She is sick most of the time and we need to find a solution as quickly as possible. Do you have any suggestions? We have been told Mayo Clinic might be the best place to go, but we don't know if we can afford it.
Dr. Hibberd's Answer:
It is very disappointing to me to hear about your misdiagnosis, but it is certainly not necessary for you to travel any further than any competent board-certified gastroenterologist. Both of these conditions are chronic potentially disabling inflammatory conditions of bowel that have very different long-term recommendations. Both are definitively defined and confirmed by bowel biopsy performed during a colonoscopy (a scope examination of the large bowel) examination, since they have very different appearances on microscopic examination.
If there is ever doubt of the correct diagnosis, the specimens can always be sent for re-evaluation by a separate pathology group. There is no need to travel for diagnosis confirmation.
Unfortunately, even in the best institutions, mistakes are made. Be careful about evaluating doctors by their associated hospitals. Ultimately, physician quality boils down to individual competence.
Crohn’s disease often affects multiple segments of bowel and is associated with various disorders not confined to bowel. Unfortunately, it often flares at sites of uninvolved surgical resection, but it is not associated with the increased risk of colon cancer seen with victims of ulcerative colitis.
Ulcerative colitis (UC) is characterized by ulcerations of the colon, and it affects the large bowel in a continuous, uninterrupted fashion in varying degrees according to each case. It does not flare at uninvolved surgical margins, and it is associated with definitive elevated risk of cancer of the colon, especially of involved areas. Patients with UC must have frequent surveillance colonoscopy examinations to survey for malignant transformation.
UC patients with persistent active disease are often advised to consider colectomy (removal of large bowel) to protect against development of malignancy, especially those who have had active disease for 20 years as in your daughter's case. I know this sounds radical, but sometimes surveillance alone is not aggressive enough to protect against the elevated risk of colon malignancy. Again these recommendations are general, and each patient requires individual treatment.
It appears the recommendation provided you by the Cleveland Clinic is in accordance with the current guidelines on management of ulcerative colitis. It is important you seek out a local gastroenterologist you can trust. You will be much happier than travelling all over the country for care. Remember, your personal gastroenterologist can always request a case review by one of the nation's referral centers (such as the Cleveland Clinic or the Mayo clinic) at a fraction of the cost of travelling there.
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