Making Lemonade

Back in the hospital again.  Two new small rectal abscesses.  What the hell is going on?  I never had abscesses, fistulae.  Are the hookworms doing anything negative since they are unable to do their positives whilst on antibiotics?  My GI says if the infection doesn’t clear in 2 weeks, then the only option is a colectomy or temporary one.  Um…what?  The rest of my colon is inflammation free for the first time, my ileal-cecal valve hasn’t had activity for years, it’s all focused right at the end of the sigmoid and rectum.  I’m not going to cut my entire colon out because the end is infected…and if the infection clears, he wants me to do Tysabri, since Humira made me worse so Cimzia probably won’t work, and the only other option is another biologic being used off label for psoriasis.  Carries the same infection and lymphoma risk as the other biologics.  Tysabri doesn’t carry the infection or cancer risk, but you have a 1 in 1000 chance in getting a fatal brain infection.

Aren’t my choices lovely?  Life offers such wonderful crosswords.  I can’t get the worms to work until I’m off antibiotics.  I can’t get off antibiotics without developing more abscesses.  I could be hopeful, get the infection cleared, temporarily use Tysabri to keep the inflammation down (I’d rather die in 2 weeks then have a long, drawn out death from lymphoma and as a gardener, I’m constantly getting scraped with dirty wounds. ) then reinfect with a larger quantity of worms, come off the Tysabri, and never, ever let myself run out of worms again for longer then just a week or two.

Anyway, I thought I’d share a song with all of you struggling with similar decisions, for everyone who’s ever had their hopes dashed time and time again and had to carry on.  The camera work and recording quality is terrible, but it’s all I could do in the hospital.

Enjoy.