A colectomy in the family

This has been a rough week.

My dad was hospitalized from bleeding (from his crohns) about a month ago.  He got well enough to be released.  But he never really was well.  The month at home was filled with stomach cramps, bloody diarrhea, and high fevers.

Things got worse, and I was checking in with him every day.  He wasn't doing well.

Last Saturday he called me at 6:10am.  He'd been bleeding rather heavily since 2am.  He asked me to dive him to the ER, since he was pretty shaky and worried about passing out.  I went and got him, and we got to Good Sam around 6:45am.  He got fresh frozen plasma almost immediately, and saline.  Later he got a bag of blood.  He finally got admitted around 1pm.

Things stayed about the same in the hospital.  More bleeding, more transfusions, not much pain, or fevers.

His GI (Dr Balaa) did an emergency colonoscopy on Tuesday.  The whole colon was in bad shape.  Two sections were very bad, and one was kind of bad.  Dr Balaa suggested a full colectomy, because my dad had pretty much run out of options.

 (He was diagnosed in 2005, and has run through lots of different medications (steriods, TNF, 5-ASA, and cancer drugs).  He responded well for about 5 years to 5-ASA (Pentasa), but for the last 2.5 years has been having problems.)

I emailed my mom (a retired RN) the pictures from his colonoscopy, and she agreed that he looked pretty bad.  The surgeon (Dr Youn) can to visit on Wednesday to discuss the surgery, and why it was a good idea etc.  It was pretty much settled from there, surgery was the best choice.  I was thinking the surgery would be laproscopic, as many surgeries are now.  But this was going to be huge, major surgery, with an incision from ribs to pubis.  He's in a weaken state (he's down to about 140 lbs at 5'11"), and he had pulmonary emboli in 2005.

In talking about it with him on Wednesday night, he was determined it was the best choice (as was I, and everyone else), but he was, rightly, scared.  He got teary, and talked about final wishes that weren't in the Trust.  That was hard.  I don't mind talking about the Trust or death planning.  But the fact that it was actually a real possibility.  Plus I have no memories of seeing my dad cry.

Thursday the nerves were a little more calm.  We found out his surgery would be at 3:30pm.  And Dr Youn came to talk to us (specifically me, Aaron and Ginny (my dad's girlfriend)), on Thursday night, and spent a long time, answering all our questions.  I like Dr Youn, he seems really capable, knowledgeable, and friendly.

I took Friday off of work, because I knew I wouldn't be able to concentrate.  I did pretty well about not freaking out in the morning.  I started to cry on the way to the hospital in the afternoon, but then my sister called and cheered me up a little.  I got there a little before 1, and just hung out.

Around 2, the anesthesiologist, Dr Steve (I didn't catch his last name), came by and met with us.  And then at 3:20 he was whisked off to the OR.

Aaron came right after my dad left.  He was bummed about missed him, assuming they'd start right on time, or (more likely) late.  He helped me move my dad's stuff, and then sat with me in the waiting room.

Time didn't go by as slowly as I thought it would. I brought lots to do (magazines, sudoku puzzles, snacks, laptop, etc).  Ginny came around 5:30, and my dad's friend Charlie came around 6.  So we sat around, and waited, and chatted a little. At 6:45 Dr Youn came out and told us all had gone well.  The colon looked pretty bad, with 2-3cm ulcers all around.

He was in recovery for almost 2 hours.  Then we followed him up to his room.  Then was where I lost it more.  It's terrible to see someone you love in pain, and know there's nothing you can do.  Though, he did say some funny things in his semi-lucid state.

Now, I've just sitting here, watching the results on the vitals machine.  BP is good, pulse ox is good.  But his heart rate is too high much of the time, especially when the pain is present.  It'll go up to 125 bpm, then when he's ok, it'll go down to 98 bpm (still high).

They're getting ready to set up an EKG to make sure everything is ok.

A change of venue.

I'm 19 weeks pregnant today.  I feel like I'm finally starting to look pregnant.  

As many of you know, Humira usually gets injected in the fat on the belly.  And to do the injection, you need to be able to get a decent pinch of fat/skin.  Well, my belly isn't too pinchable anymore, so today I moved my injection site for the first time.

I reread the directions, since I'd never done that before.  And the directions don't actually show instructions for the thigh.  So I went to youtube, and found a helpful video.  

I was pretty nervous, which is bad, because I'm prone to vaso-vegal reactions (fainting), and I'm home by myself.  So I made sure my blood sugars were up, which helps a bit.  Took some deep breaths and pushed the button.  At first it hurt less than the belly, then just as much.  But in the end, I think it may have been a little less painful.  And I didn't faint or get light headed.  (Bonus!)

I'm glad this worked out, since I'll been needing to do this for the next 21 weeks or so.  I got a couple other options from the doctor, but they were less optimal.  I was also given the option of the saddle bag area, or the back of the upper arm.  The issue with these locations is that I can't access them myself, so Aaron would need to help; and he's not too keen on that.  He did it once before, and hopes to never have to do it again. 

Crohns+pregnancy

I've been pregnant for a few months now.  Though, I've only known for about a month.  I guess I'm slow to come to the party.

I'm right somewhere around 12-13.5 weeks.  I guess things have pretty much been ideal.  My guts have been behaving.  I've had some indigestion, some nausea, but nothing terrible.  No flare ups, no cramping or anything.

I'm still taking the Humira weekly.

So not much to report, which is good.

Traveling with Humira

My little sister graduated from college this year.  (Actually, she graduated in December, but the ceremony was held a week ago).  I fly back to the East coast once or twice a year.  Previously, my Humira-day didn't overlap the time that I was gone.  On this trip, however, it did.

Humira needs to stay refrigerated.  It's not like many drugs you can just toss in your bag, and be on your way.  

My dad did the research for me, and found that the Humira company will supply a travel kit.  So I called up to get one of those.  It consists of a small insulated style lunch bag that holds a cold pack on both sides.  The rep warned that the cold packs need to be frozen solid, or the TSA will take them away.  

I was a little nervous going in, I didn't want my (expensive and needed) Humira to get taken, or get too warm to be useful.  

In the end, there were no issues.  They didn't even look in my lunch bag.  By the time I got to Virginia, the cold packs were a little squishy, but still cold.

All is quiet

All is quiet in Crohns Land, as of late.  When you have crohns, this is what you want.  Nothing to report.  No pain, no weight gain or loss, no side effects and normal blood work.  So all is well.

We've also been given the green light for trying to get pregnant.  Hopefully, sometime in the not too distant future, this blog can be about crohns and pregnancy.

Using Humira (in pictures)

My box of 4 Humira syringes (One month's worth).

One pre-packaged syringe.  

My set up.  I always close myself in the bathroom, to keep the cats and dogs from messing me up.  I lay everything out on the toilet lid (sometimes I bring a snack too).  This is the syringe and an alcohol wipe.

Me getting ready.  (Gotta psych myself up)

You have to get the little bit of air out of the top.  This one is prepped.

Clean the area, then stab away.  (I'm not quite this fat, but I sit slumped so I have a good place to stab into). (At this point you're suppose to pull the plunger back to make sure you didn't hit blood, but I always skip this part).

The after; hard to see.  A red dot, and some Humira leaking out.

A used sharp.

My make-shift sharps container.  (Those aren't all mine, the little white ones are from my dad's Forteo)

All is well

I've actually been feeling good for a while.  I was really skeptical that Humira was going to work.  Especially since nothing else did.  But once a week Humira is working great.  I have no symptoms and no side effects.

This is what the syringe looks like, but it's not my picture.

My dad (after mucking with Pentasa dosages and ending up in the hospital) has been taking Humira twice a month, and having very good results too.  He's having a couple minor side effects, but is happy with the results.

I'm not looking forward to buying my first dose of the year, since my drug deductible has reset, so it'll cost $250-300 for the first dose, but then $35 a month after that.  I'm pretty pleased to have such a low drug deductible.

Actually I'm pleased with my insurance in general.  I often thank God for my insurance.  It costs almost $300 a month through my employer (I work for a small company), but it's very worth it.  Especially since I never know when I'll need specific care.

Oh, and other good news.  My blood work is completely normal.  Every test was well within range!

And the better news, if I can stay well for a few more months, I'll have the all clear to start trying to get pregnant!