Home sweet home. Now where is my sleep?I


I am home.  I am glad to be home but I feel completely exhausted.  I got around 6 hours of sleep last night, almost interrupted and it feels like I haven’t slept since yesterday.  I was hoping that I had an appetite this morning, but nothing.  I thought about making some oatmeal or something easy to digest and just dealing with it… but the wave of nausea that came after that thought changed my mind.  I’ll try again later on and hopefully manage something so I can get some energy.  At lea st I know the obstruction is still clear though, I can keep down liquids and no pain directly from them.

I’m glad to be out of the hospital though, I was discharged yesterday afternoon after meeting with my surgeons and my GI.  Surgery is a no go for now, both surgeons feel like if I can continue to keep a handle on my disease barring a hospitalization here and there to help with a minor obstruction, that it’s not necessary to slice and dice now.  My GI (reluctantly) agreed and he and I discussed new medications and altering my normal ones.  The conversation wasn’t the most enjoyable, but it needed to be had, which I knew even before this last obstruction.

So since there is a new area of inflammation and the regular area doesn’t seem to be improving anymore, it looks like Remicade (my infusion I get every 8 weeks) is starting to not work.  Both of the GIs think that my body is building antibodies to the medication, just like it did for Humira.  So we added Entocort back to my med list, mostly because Prednisone had so many nasty effects for me and had started to do some damage, I didn’t seem to have such a hard time with Entocort.  In addition to that, I’ll also start taking 6mp again.  I’m not thrilled about that, mostly because again, side effects as well as the higher risk of Lymphoma (in additional to the small risk that Remicade carries).  That and the weekly blood draws to monitor me.  Ugh.  I’m not pleased but honestly Remicade had been working great (short of the fistula) and we don’t want to let that go.  The goal is to use Remicade as long as possible and to use the Entocort to bump me as close to “remission” as possible.  Then, eventually, when I absolutely need it, I’ll have a resection.

So I guess let’s hope for the best, and in the meantime, I’m going to go lay back down.  Crohns sucks.


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