Alison’s recovery
Saturday January 31st 2009, 8:28 pm
Filed under: Crohn's flare

Well we are off, on the road to recovery.  She is trying hard to be good, and really likes that nice green pain button.  Everything is looking good, as the Drs. see it.  The surgeon say everything else looked healthy when she looked around.  Alison has been able to sit up and walk a short way.  She sat in a chair for twice as long as they required and has taken two very short walks.  Her BP is a bit low, even for her, so she hasn’t been pushed much.  The only excitement has been the O2 sensor that makes quite a racket if her breathing gets too shallow.  I put the laptop on her bed and she read all of the comments.

Friday January 30th 2009, 10:29 pm
Filed under: Crohn's flare

I am a bit to tired to try to be clever.  So just the facts, maam just the facts….

The surgeon considers the operation to be a success.  The colon is no more, and was really bad.  Technically things went better than expected.

Alison is in a lot of pain, and pushes the button every 10m for relief.  She was worried that it would run out, but think we got her to understand that 1)she can not OD on button pushes, and 2) They will keep it filled tonight.  They do not want her to be in pain at the moment.  I spent an hr in recovery kneeling at the side of the bed getting things done and holding her close.  She is bruised and battered, but hopefully will start to mend.

She is off to lose her colon
Friday January 30th 2009, 2:22 pm
Filed under: Crohn's flare

Alison is off lose her colon, the hopefully the sickness to. Not being as talented as her I can make it cleverly fit the tune.

The grand chuckle
Thursday January 29th 2009, 6:33 pm
Filed under: Crohn's flare,Life

So.  Last night at bedtime I offered up a prayer, wondering if this surgery really would totally cure my Crohn’s forever and I’d never have to worry about it again.  What I felt in response!  An overwhelming sense of love and compassion from Above and at the same time: that God laughed.  Offering to me such joy as He did so so as to make me want to laugh for joy too.  I don’t know what the future holds, but, if and when it comes–we’ll handle that one together too.

And all felt right in the world.

(Ed. to add: surgery at noon tomorrow is the plan.  Operating room times vary in real life, but, it’s tomorrow about then.)

Decision made
Wednesday January 28th 2009, 4:48 pm
Filed under: Crohn's flare

What the Humira did for me was to stop the endless, intense nausea that had me on two meds for it and asking for more as a dose would wear off. It’s gone. That alone was worth the Humira yesterday.

What has been amazing to everybody all along is how very little pain I’ve been in, given the state of that colon.  They press on my abdomen, going, Does that hurt? And almost always the answer is no. (With me gleefully thinking, and I know whyyyyy…. Prayers.  All those prayers.) Every now and then a twinge, but given what’s going on!  One doctor even told us that it is noted in my chart, “Patient looks deceptively well” as a warning to the team not to dismiss the seriousness of it all.

After a discussion with various doctors and my Dr. R in particular today, the decision is made. Surgery. I can’t wait. The thing will have an end.  Since I have never had any sign of any Crohn’s anywhere else, I won’t have to be on immunosuppressants anymore.  Dr. R feels it will essentially cure me.

And THAT is a miracle!

(Ed. to clarify: my particular Crohn’s has always been caused by LE cells from my lupus. I’m not a typical case. Those LE cells never showed up anywhere else that Crohn’s might.)

Or miracle #3
Tuesday January 27th 2009, 2:18 pm
Filed under: Crohn's flare

Wow you guys. And thank you.

When four folks from the surgery team showed up to introduce themselves last night and first assured us they were not a barbershop quartet, they had us laughing a good one.

Thinking about yesterday’s post later, after Mom and Richard had left for the evening, that word “desperately” I’d written was emotionally exactly right.  And yet.  As all your prayers poured in on my behalf, the idea of the surgery became much more–I guess what I’m saying is, I let go of the fear. I hadn’t known it was there. I let it just go.  I realized that I’d been trying to tell God what outcome I wanted.

Just as I finished typing the above, by the serendipity of the grace of God, both the surgeon who would be doing the operation if they do and the female gastroenterologist on duty showed up within a minute of each other, to their surprise, so we all got to consult together.  I just got my Humira; everybody’s willing to give it a few days to see how it does.

And get this: the female surgeon bought a qiviut cowl at Oomingmak in Alaska! How cool is that!

I told them what I really really want is to still get to go to Stitches West one month from now for at least a little time. I know I can’t expect much, but I’ll get a little.

They oohed and aahed over my book, called me a celebrity and made me laugh, and we had a lovely visit after the strictly medical stuff.  And I am hugely buoyed up.

And life is good.

Needing a miracle
Monday January 26th 2009, 4:16 pm
Filed under: Crohn's flare

I needed two miracles, one small, one big. I got the first one this morning, for which I am infinitely grateful: I was first on the list and got a PCC line (“pick”) nurse installing my PCC line first thing this morning. This means that for the first time in a month, via tube now, I can get full and complete nutrition and my body can recover that way.

The second is much dicier. Tomorrow is the day, after the requisite two week interval, for my second Humira dose. It will be two epipens’ worth; the first dose was four epipens, next those two tomorrow, then I am to have one every other week after that forevermore.

I desperately need tomorrow’s dose to work.  Really work. If it does not, I have to have my colon out and will have a long hard recovery from that, and once you cut into a Crohn’s patient, there are many more surgeries later over the years.

If that Humira takes, I can avoid all of that and be home free.

Sunday January 25th 2009, 3:53 pm
Filed under: Crohn's flare,Life

I was thinking about taking a shower this morning when the housekeeper came in to collect trash, scrub the sink etc and mop the floor. I watched her quietly, and as she mopped near the bed I told her thank you.  I added a moment later that I would love to be able mop floors again soon too, and she was making it safer for me so I could get healthier.

She mopped extra and with great care and a smile after that.  Her work is as important in its way as everybody else’s here, and I knew it must be meaningful to her for that. Having someone acknowledge that out loud and thank her–it was what I could offer her.

When we acknowledge the importance of what someone does for us, however mundane a thing it may be, we acknowledge the inherent service and kindness behind it.  I say this with a sense of wonder at the love I felt bloom in the room. I was not helpless no matter my condition, nor being helped; service is far greater than that.  Rather, we were equals on every level before God in that moment.

Saturday January 24th 2009, 3:01 pm
Filed under: Crohn's flare

A new doctor came by and basically said, wow, you look a lot better than I would have expected after seeing your labwork.  But she said I ought to meet the surgeons sooner rather than later; there’s still a possibility of losing the colon and she didn’t want it to be under emergency circumstances.

I mentioned the second Humira dose (two epipens’ worth for the second dose) is to be Tuesday, and we all hoped.

I have a team of gastroenterologists working on me, and I’ve been impressed at how very careful and thorough they are.

And a few minutes ago Mom and Richard and I were taking a very short walk outside my room when I exclaimed, “BRIAN!!! I’d recognize the back of that head anywhere!”

Brian turned around, surprised, and my favorite old nurse from six years ago and I threw our arms around each other.  SO good to see him. Although I prefered doing so, say, after the last time I ever knit a pair of socks: they were for him.  As a thank you for being willing to walk in his patients’ shoes.

He’s a good one.

Alison’s status
Friday January 23rd 2009, 8:21 pm
Filed under: Crohn's flare

The initial test results are in, and you may not believe it, but the doctor said her colon looked “Moth eaten.”  This is not good as apparently she has lots of ulcers about the size of a cigarette burn all over her colon.  This is significantly worse than the pictures they showed me 3 weeks ago.

The docs have a theory to explain why she is as bad off as she is, and if the tests are positive for what they suspect, it should be treatable.  It would be a good outcome, as it would explain several things, although the long term ramifications are not completely clear for me at this point.

Hie thee to the hospital
Thursday January 22nd 2009, 8:37 pm
Filed under: Crohn's flare

Alison has been bad, or more correctly her body is not cooperating. So she is now in the hospital for fluids, PPN/TPN, and tests. She was unable to eat or drink anything without paying too high a price. She is still reading comments, but is one sick lady.

Up to 112 pounds! Yay!
Wednesday January 21st 2009, 1:18 pm
Filed under: Crohn's flare

And second day no fever (at least so far)! Double yay!

I got gently chewed out for drinking a lot of water Monday instead of anything else: I needed a little more salt.  And sugar. Calories.  And to get some protein in there for the recovery. So today I downed a chalky Trader Joe’s gross Protein With Pizzazz bottle and felt very proud of myself. It’s been eight days since the Humira, six till the next dose, and I keep hoping for things to settle down, but my system’s angry at being fed.  Well, pbbbbt to it–I’ll sit on the can and drink my smoothies if it has to be that way (and it has at times).  But I am gradually making some progress, even if I’m impatient with it.

Tuesday January 20th 2009, 4:37 pm
Filed under: Crohn's flare

I managed to eat more last night and this morning, but I’ve been paying for it with lots of bleeding, whereas the bleeding had gone way down. After the 10th time since midnight, I thought, okay, self. All these people are praying for you: tap into that.  And so I asked for your prayers to be working to help my bleeding to at least go way down.

And then it did. So far so good now.  And I’m actually sitting up typing–this was unthinkable earlier, because I’ve been extremely weak today.

The doctor just put me on potassium pills because mine was so low. (Guess which rebellious soul drank zero gatorade yesterday and then got her blood tested in the afternoon?)

I totally missed the Inauguration. Can’t wait for next week’s Newsweek, and when I’m up to it I will look up videos online.  The important thing is, it happened.

And as always, I am very much in your debt for your comments and caring.  Thank you.

Briefly upright
Monday January 19th 2009, 6:34 pm
Filed under: Crohn's flare

Yesterday was scary: blood pressure was through the roof in startling numbers.  Me? The low bp person? Heart rate 133 a few times, but always high.  Didn’t LIKE.

Today they let me cut way back on the gatorade the doctor was hoping would counteract the effects of the diarrhea, and back by half on the prednisone. I was going to start taking just one in the morning and skip the evening dose, but I barfed everything two minutes after taking my meds. So. I guess I take the doses in the evenings while we taper it off.

And my bp was high, but not dangerous. My pulse 85. That’s a whole lot better.

Richard went to the bathroom and I heard my barf bowl careen off the side of the shower: it’s a kitchenaid metal mixing bowl.  I said to him, So. You went to the bathroom and kicked the bucket?

Alison’s status
Sunday January 18th 2009, 1:55 pm
Filed under: Crohn's flare

“The doctor said the recovery would not be linear.  This is a non-linear day.” The fever is not bad today, but the patient is beat up and exhausted by 12:30.  The “they” don’t have the heart to bully her at the moment.  She is miserable.  Hopefully with a good sleep she will fill better this evening. Her mom says she felt well enough this morning to try to get her hair washed, and that completely wiped her out.