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.

 

  1. AJ’s avatar

    Sorry to hear about your recent troubles. If it comes down to a colectomy, I would seriously consider the stem cell transplant.

    Any news on using Prochymal?

  2. admin’s avatar

    Yeah, I was set to enter their trial, just had the final exam to do. Then Osiris suddenly changed their requirements saying you could only have failed ONE biologic. (I tried two.) The thing that REALLY sucks is I had to let myself get worse to qualify; you needed a cRP greater than 5, and a CDAI between 250-350. I would have just done a drug like Solara or Tysabri after I cleared the last infection and CRP was back to 0, then put more worms in. Instead, in two weeks, I developed these abscesses, and here I am. Damn Osiris! And you can’t lie to get in, since they just check your medical records.

  3. Linda Hagar’s avatar

    I’m wondering if your worsening Crohn’s at this age could be related to hormonal changes? (Also because ALL of my health problems are related to hormones.) When I find my hormone book, I’m going to lend it to you.

    I hope you start getting better!!!!!!!!!!

  4. Nikki Dugas’s avatar

    Your song is beautiful. I listened to it three times it moved me so much. Thank you for sharing it and your story. My thoughts are with you in, Nikki

Reply

Your email address will not be published. Required fields are marked *