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.


Everything You Ever Wanted to Know About Silence


This is one of my favorite bands.  When I first started listening to them, I fell in love with the raw emotion and the bitter wounds these songs painted a picture of.  Years later, I related to this band more than I wanted to.  The lead singer, Daryl Palumbo, suffers from Crohns Disease.  This song was specifically written about the disease and it’s effect on his life.  The lyrics make me stop in the middle of thought every time I hear them.  Give it a listen though it’s not everyone’s cup of tea.  If you’re daring, Google the lyrics.

I’ve never reached full remission, not once, with this disease.  I’ve come very close over the years, but as they say, no fucking cigar.  For the past couple of years, I’ve only dealt with problems from my fistula (connects my bladder and intestine).  Pretty lucky, and I am have been thankful.  The “typical” symptoms have for the most part, stayed away.

Well.  They did stay away.  Past tense.  Yup.  I am back in a full-blown Crohns flare.  I had been crossing my fingers over the past week or so, thinking that maybe it was a stomach bug.  Maybe I really wasn’t getting sick, it was a fluke.  It had to be a fluke.  I even had a moment of hope earlier.  I only got stuck in the bathroom just a couple of times.  I managed to eat *and* keep it down.  Luckily my damned innards decided to at least keep the false hope up until I got home.

To be quiet honest, I am having a hard time dealing with it.  The fistula problems and the fatigue are pretty difficult, but the full blown flare?  It’s been pretty hard to deal with all of the symptoms combined again.  Then of course there’s the fear.  The last time I had a flare, was a couple of years ago.  I had been on Humira for a couple of months, and out of nowhere got sick again.  Then I got sicker.  Then the weight starting falling off.  Humira was no longer working, despite increasing injections.  That’s how I ended up on Remicade to begin with.

What if Remicade isn’t working anymore?

I don’t know.  I’m trying not to worry about it, I’m trying to keep my stress down.