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questions & answers 2008
Q A general question on Crohn‘s disease
A Dr. Chapman thinks that Crohn‘s is not just one discrete disease. He hoped that the genome project may clarify this and other questions.
He has 58 patients with Crohn‘s disease and has been studying the natural history of the disease look-ing at two groups: those with Crohn‘s disease alone and those with Crohn‘s and PSC. None of them appear to develop pre-cancerous changes in the colon.
Tom Karlsen said that there are common genetic associations be-tween colitis and PSC – common genes. We are finding new UC (ulcerative colitis) genes. There are 8-10 UC genes. Most of these do not involve susceptibility to PSC. The kind of UC associated with PSC may be different from UC alone. This has also been Dr Chapman‘s view for some years.
Q I don‘t have UC but I do have PSC. Am I the exception?
A It is not unusual to have UC after being diagnosed with PSC – so you may still get it. Most people already have IBD but it can develop later. But yes, about 15-20% with PSC don‘t have IBD. Could this be a different condition? This may be answered by the genome project. If you have PSC and not UC, we still think you should have a colonoscopy about every 5 years. There is no rule about this. It is every year if you‘ve got IBD. But we have found after doing MRCPs on our UC patients (with no signs of PSC) that after several years of careful investigation, 18% have evidence of PSC. They have no symptoms and normal cholangiograms and LFTs. Interestingly we find many more females in this group. Generally PSC is more common than we thought.
He has 58 patients with Crohn‘s disease and has been studying the natural history of the disease look-
Q I don‘t have UC but I do have PSC. Am I the exception?
A It is not unusual to have UC after being diagnosed with PSC – so you may still get it. Most people already have IBD but it can develop later. But yes, about 15-
Q Does PSC return after liver transplant?
A Yes, sadly it does, and in about 50% of cases after 10 years. Three research papers have been published this year saying much the same thing. Colitis can also get worse post transplant.
Q In relation to Travel Insurance – I‘ve had a transplant, do I need to declare that I still have PSC?
A It is best to say that you have had a liver transplant and that your condition is cured (if that is the case). But yes, you still have a condition – it is not just a liver condition. We are often asked as consultants to write letters for travel insurance purposes confirming patients‘ state of health.
Q On diet – Do I need to follow a specific diet/take supplements/vitamins?
A Dr. Chapman said that what you eat doesn‘t make much difference to your PSC if you are not jaundiced, although if you have cirrhosis there are some precautions to take. If you are jaundiced, then taking fat-soluble vitamins and a low fat diet will make you feel better. Dr Chapman had not seen much evidence for the use of fish-oils in PSC.
Q Does Coenzyme Q10 help with fatigue?
A Dr. Chapman confirmed that he does not routinely use Coenzyme Q10 for fatigue with his patients. He said he was aware of David Jones‘s research in this area [with PBC patients] but the research has not yet got to the stage of placebo-controlled trials. He said Modafinil was promising for fatigue in PBC and PSC patients and there have been some small trials. Fatigue is associated with
Q Does Coenzyme Q10 help with fatigue?
A Dr. Chapman confirmed that he does not routinely use Coenzyme Q10 for fatigue with his patients. He said he was aware of David Jones‘s research in this area [with PBC patients] but the research has not yet got to the stage of placebo-
