So far, so good.

I had my first outpatient Remicade infusion today. It was actually my second dose, since I had one two weeks ago during my hospital stay. It seemed to go well. Before the Remicade, I got a big ol' IV dose of hydrocortisone, which is apparently supposed to lessen the side effects or adverse reactions of Remicade or something. This is in addition to the 50mg/day of Prednisone I'm already taking this week, so I'm a little wired today. We'll see if I have any funky side effects in the next few days from the Remicade. In the hospital I had night sweats for three nights after the meds, and a nurse looked it up and said that was a side effect of Remicade. I won't have the luxury of a call button here at home for someone to come in at 4am and change our soaking bedsheets, so hopefully sleeping on a bath towel will do the trick. Ah, my life is so glamorous.

I didn't really know what to expect from the infusion center (at Riverside Health Center). It's a smoothly-run operation, but relatively laid-back. It's basically an L-shaped room with a row of recliners and a few hospital beds, each one set up with an IV pump and some other equipment, plus a big nurses' station. The nurses were very friendly and patient and calm and everyone, even the chemo patients, seemed in okay spirits, considering. Most of the other patients were on a first-name basis with the nurses and some had apparently been there several times over the last week or two. A few had surgically implanted infusion ports because they have such frequent treatments, one was completely bald from her chemo, and others were just stopping in for a treatment before a long day of bone-density scans or other diagnostic procedures. It really put things in perspective for me. I may be in some discomfort, but I'm not battling for my life right now. I am so so so so so lucky.

Because of the timing of my appointment, I had to miss a big company luncheon at work. While I'm not usually big on corporate events, I do enjoy a good free, catered meal, and I was a little bummed to miss it. Two things happened to brighten my day a bit. First, an unexpected 'perk' of a mid-day infusion appointment is that they serve you a boxed lunch. While it was still hospital food, it was totally within the limits of my current dietary restrictions, which was comforting. Second, before leaving work for my appointment, I jokingly sent an e-mail to my friend/project manager Tracie suggesting that somebody attending the luncheon smuggle out a piece of cheesecake in their purse for me. Well, she did it. All old-lady style, wrapped in a napkin and everything! I was tickled that she did this for me. It was a pretty tasty slice of cheesecake, too (although, admittedly, probably a little richer than what I'm supposed to be eating right now).

One more bright spot-- while I got my infusion, I knitted a tiny pair of baby mittens for the niece or nephew I hope to be meeting in a week or so. They match a hat I knitted for the baby during my hospital stay. Now I just need to figure out how to get more knitting done with less illness-- that would be a better balance and I'd probably be less stressed, too.

P.S. Ezra liked the bandage on my arm from the IV, so we made him one with gauze and tape from the first aid kit. We wore them like twins to the library to pick up some books while Rob made us a delicious dinner (roasted chicken and potatoes!) That kid is so much fun. My family is so much fun.

UC--there's something you may not (want to) know about me

A warning for the squeamish-- this post contains descriptions of illness and bodily function. If you can't handle that, don't read it.

In September 2009, I was diagnosed with an autoimmune condition called ulcerative colitis (UC). If you're interested, there is plenty of credible information about UC at the Crohn's and Colitis Foundation's website (www.ccfa.org) and also on Web MD. Basically, my immune system attacks my colon for some yet-to-be-determined reason, and when I am not in remission I live with chronic, urgent, bloody diarrhea. I'm talking dashing to the bathroom 20 to 25 times a day (and in the middle of the night). In addition to needing to be close to a bathroom at all times during a flare, there's also fatigue, cramping, and some pretty uncomfortable inflammation in my colon which leaves me unable to do much physical activity.

In my case, the UC likely started after giving birth to my son in June, 2008. Apparently, this is not uncommon, as the immune system is suppressed during pregnancy to prevent rejection of the fetus, and it comes back 'on-line' again once the baby is born. I had some digestion changes, as well as some soreness and bleeding, for a while after the initial postpartum period ended, and I even saw a proctologist in November, 2008, who diagnosed an anal fissure (basically just a small tear that causes bleeding) and told me to increase fiber and that it would heal eventually. It took almost another year for my disease to progress and a doctor to finally send me to a specialist for a colonoscopy after hearing of my ongoing problems with urgent, frequent, and increasingly bloody diarrhea.

The course of my illness has had a quick progression. Since December, I have had three five-week courses of Prednisone, the only drug so far to control my flares at all. Prednisone is a powerful drug with a lot of really unpleasant side effects. Plus, as soon as that last dose of it leaves my body, my symptoms come right back. My most recent flare has progressed over the last eight weeks or so without much control as I tried my first regimen of a self-injectable medication called Humira. Previous to this, I have been on Asacol and Lialda, plus a brief stint on Canasa, all with no success. If my latest course of treatment (see next post) is not effective, I can try to take part in some clinical trials for medicines up for approval soon, or I can have my colon removed. So, that's where I am.

An unexpected staycation at Riverside Hospital

First off, a warning. In this post, I'm going to be talking about illness and bodily function. If that offends you or will make you see me in an uncomfortable way next time we meet, stop reading now. For the rest of you, suffice to say, everybody poops (but hopefully most of you won't ever have to deal with my condition).

After spiking a fever of 101 on last Thursday, July 7, I spent most of the next four days with a constant fever of 101 to 102 that wouldn't respond to Tylenol and with unrelenting symptoms from the UC. I went to work Friday and felt the chills, fatigue, and inflammation getting worse. I was also running to the bathroom at least a few times an hour with diarrhea, no matter what I'd eaten (or had not eaten). By the weekend I was totally out of commission (and, as I know now, I probably should've just called my GI doc at that point). I stayed home from work Monday feeling just as awful, contacted my GI doctor, and got in for an afternoon appointment for a flexible sigmoidoscopy (if you're curious, look it up). The results of that led my doctor to have me immediately admitted to Riverside Hospital, luckily right around the corner from his office.

The next few days were kind of a hospitalized blur. My first night there, Monday, was the worst. Because of (I think) pretty severe dehydration, it took eight tries to get an IV line in my arm. Ouch! I have a pretty nasty bruise in one arm and a bunch of other needle marks from the lab-work I had done every day of my stay. Lovely. Plus, since they had not consulted with the GI doc yet and were reluctant to make drastic changes to my medications, they basically did nothing but give me Tylenol, and I ended up with a fever of 104.6 that night while watching Anthony Bourdain visit Columbus on No Reservations. That was fun. The nurses couldn't believe I had such a high temp, and they talked about it again every time my chart was reviewed.

I spent all day Tuesday requesting to see the GI doc and asking whoever would listen if I could have something to eat, since they were only allowing me ice chips--even a sick girl with chronic diarrhea needs some nourishment, people! I was finally granted my wishes by Tuesday evening and started on IV steroids and two kinds of antibiotics (Cipro and Flagyl) to combat any possible infection that may have been causing my fever. The GI doc also decided I should stop taking Asacol (which I had recently re-started in addition to my Humira regimen), as he was concerned I might be having a negative response to it. He also instructed me to stop taking Humira and started me on Remicade, which I will continue to receive through IV infusion, normally every six weeks. I was also given clear liquids for dinner.

Tuesday morning was my last high fever, so the rest of my stay was mostly me adjusting to the meds and getting rest, plus the docs running more tests. I slowly returned to 'normal' and was cleared to leave the hospital on Thursday afternoon with doctor's orders to stay home and take it easy on Friday and for the rest of the weekend.

I owe many, many thanks to my wonderful, loving family and friends and especially to Rob, who took care of Ezra and me throughout this ordeal. My parents, Ry and Bri, Lauren and Coco, and Jeni all visited me in the hospital as well, keeping me sane. In addition, a handful of willing friends texted with me throughout the days, which helped a lot. Let's hope this was my last hospital visit for a while and that the new meds do the trick, eh?

How did you spend the Great Ohio Blackout of 2008?

We sent our frozen meat and packets of breastmilk to a friend's house for the week. We ran an extension cord from over the neighbor's fence and under our kitchen door to make coffee and listen to NPR (since part of our street had power restored several days before ours).We spent the days creating art and politically-inspired crafts. We relaxed in the dim light and talked. And we gave our son baths by the light of electric duckies.

p.s. Don't worry-- it wasn't really that dark during bathtime. The camera just didn't pick up the light very well.