Monday, November 17, 2014

Diary of a Crohn's Flare: Hope vs. Reason

On Hope
On Friday I'll see my Infectious Diseases doctor about my fungal pneumonia.  He suspended all treatment for my active and severe Crohn's Disease until after I clear that pneumonia.  Since I'm feeling much healthier and I want to get my Crohn's treated, I'm really hoping that he'll declare me over the infection and ready to proceed with treating my Crohn's Disease.

On Rationality
From everything I've read, fungal infections take a long time to recover from.  The standard of treatment for my infection is 6-12 months of anti-fungal medications.  So rationally I know I won't have cleared the fungal infection and that my Crohn's treatments will have to wait.


The problem
Crohn's is a progressive disease.  While I'm waiting to clear this fungal infection, the Crohn's is chewing away at my intestines.  It's certainly possible that over the next 4-10 months remaining in the standard treatment plan, that the disease will do enough damage to require another surgery.

The other side of this issue, is that all Crohn's medications are immuno-suppressants.  If they begin treating me with those before I've cleared the pneumonia, the fungus will go into overdrive and rapidly grow again.  While the danger from this infection is minimal while it remains in the lungs and is being treated, if the fungus spreads to the blood stream and infects other organs, it becomes very dangerous.  Cryptococcus infection of the central nervous system is usually fatal and almost everyone that survives has some level of brain damage.  Infections of other organ systems are quite as bad as that but generally very bad.

This is something my ID & GI doctors and I need to work out.  From prior discussions with the ID doc, it sounds like they can give my prophylactic doses of anti-fungal medications when I begin taking treatments for Crohn's.  However, we won't work out the details until after it looks like I've cleared the pneumonia.

In summary
Regardless of how I feel, the consequences of ending treatment too early are very very bad.  I need to resign myself to another four months of anti-fungal treatments.  I'll hope the damage done to my gut can be halted and healed by the powerful Crohn's treatment that we plan to use (anti-alpha tumor necrosis factor, aka TNF inhibitors).

Fingers crossed.

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