Wednesday, November 4, 2009

on waiting it out

No sooner had I convinced my poor parents that waiting it out was the best plan of action than I had another major attack.

I have had a somewhat intense past two days at work, but I don't presume that to be the cause.  I am further baffled by which of my meals during the past 48 hours could have caused such dramatic upset.  Leftover cauliflower soup, tuna/crab sushi, egg, toast.  These are all foods I've eaten before with no direct consequence; they have all only been associated with pain via the Weekly Throughput, save for cauliflower.  I have, however, had three small servings of pureed cauliflower soup since Sunday, so perhaps it was the cauliflower...

This was a fairly sudden attack, as they go.  I was fine the whole day until a few minutes before I stepped onto the bus home.  I then spent the next 45 minutes starring stiffly into the pages of Copernicus' Secret trying not to appear cracked out or release any agonizing noises (from either end).  I think I turned two pages for the sake of appearance, and read none.  This was an attack similar to the ER episodes of this flare; waves of climaxing and waning pain that lasted less than a minute each.  The difference with this episode was that the pain was not only in my lower middle abdomen (where my small intestine is clean as per Dr. S and obstructed as per Dr. P), but also in my left large intestine (the new locale that entered the scene just before my SBFT, and about which neither doctor said a thing), and more subtly all throughout my bloated abdomen. 

So I did it: I road the bus all the way home in peak rush hour traffic with an attack.  I did, however, call H.B. upon reaching the park-and-ride and ask him to ready my heating pad so that I could immediately apply my favorite antidote upon walking through the door.  He also served me a bit of prune juice with some oxycodone (my first dose in three weeks).  I have no idea how I have come to be so lucky as to call this man mine, but I call dibs forever.

The wait-it-out plan is still in effect, and will not be diverted from due to this unexpected episode.  The reason is this: I want to know what Remicade's potential is for me.  I want to get off the prednisone and see what Remicade can do for me without the aide of steroids.  I want to continue on purinethol and Remicade together so that I can observe any helpful effects of the additional immunosuppressant (which may be protecting me from developing antibodies to the Remicade itself).  After the 5th infusion, I want to stay on Remicade alone for a few more to observe my reactions and how my symptoms change, even if they do not "clinically improve."  These observations are important to note before I start reintroducing supplement and dietary interventions (my original plan of action).  If my baseline level of pain remains at this slightly higher constant, and if I continue to have weekly intense attacks, that is important to find out as well.

With the help of H.B., oxycodone, my hot pad and some Mythbusters, I enjoyed a bit of chicken and rice with soy sauce for supper tonight.  I'll be alright.


  1. greetings from wait-it-out land, tysabri division. you are a tough egg. remember: if you happen to make an agonizing noise on the bus (from either end), you won't have been the first, although you may be the first acting for a good reason.

  2. ugh dude. sounds mega painful.
    love you

  3. kara -- you make an excellent point, thank you, and i hope things are looking up on your end.

    lizzy -- much love in return. and i think you should ask your awesome doctor in SF if he has any amazing pals who deal with crohn's. if he doesn't, ask him if crohn's is close enough to lyme that he could work with me.