That says it all

June 14, 2009

After meeting with Dr. G a couple of weeks ago, I decided I would try to decrease the amount of Cipro I was taking to see what would happen. He had said that an ideal amount for long-term use would be about 250 mg/day. I was taking 1000 mg/day. Dr. T was the one who prescribed it for me, so it wasn't that Dr. G was changing her prescription, he was just answering some questions we had about long term antibiotic use. I've been on 1000 mg of Cipro for about four months now I think, maybe longer. Anyway, about a week ago I went down to 500 mg/day with the hopes of decreasing it even more if it went well.

It hasn't gone well. The first couple of days down at 500 mg I noticed I was getting up in the night two or three times instead of once to go to the bathroom. I shrugged it off, thinking maybe it was something else going on. But that continued throughout the week, and then this weekend I started feeling even more crappy. I've been going to the bathroom more frequently, it burns when I go, it's watery, and then today my pelvic pain started getting worse. I'm no doctor, but that to me means that even at 500 mg/day my pouchitis flares. I just can't keep going like that. I feel a little more run down. I'm sure I'm at a higher risk of dehydration too with me having watery BMs so frequently. So today I went back up to the 1000 mg.

Big deal, right? I mean, if the meds are taking care of the problem, why worry? And Dr. G reassured me that if I get some strain of a bug that is resistant to the Cipro, there are other antibiotics to take. I know fellow j-pouchers who have taken Cipro non-stop for years. I don't need to freak out about this. But there is a greater significance here for me. One that hasn't really sunk in yet.

When we met with Dr. K (my new OB/GYN) about a month ago, she said that Cipro is too powerful of a drug to take during the first trimester of pregnancy. Cipro is the only drug that keeps my pouchitis at bay. And there is no way I could go through a pregnancy suffering from pouchitis. Even thinking about just going through the first three months with it makes me want to cry. Maybe I'm just too much of a wimp. Maybe I could tough it out. But I can't think that having a mother who had a bacterial infection going on would be healthy for a growing baby anyway.

So I don't know if I'm just totally okay with that, or if the significance of it just hasn't sunk in yet. I do know that my thought life the past few weeks has not been focusing on being pregnant or having a baby. So maybe I'm okay with it.

Jeremy and I were out running errands today and he was playing ELO. I don't know if it was because I wasn't feeling 100% physically that my mind was primed to go to memories of being in the hospital or what, but I was immediately back in my hospital room at UMC. Jeremy often played ELO for me through the TV's DVD player in my room in the mornings. As I was having this "flashback," it was is if I was standing in the hospital room watching myself. I could see myself, big and bloated, barely able to walk. I could see myself holding on to the handrail in the shower, barely able to balance myself, let alone stand for long because I was so weak, but I held on as long as I could nonetheless because the water felt so good on my aching body.

I saw myself looking into the mirror at my puffy face, sunken, lifeless eyes, and thinning greasy hair. I watched as I brushed my teeth, worrying that my teeth were going to fall out on me because I was so malnourished. I could smell the hospital issued all-in-one shampoo/body wash. I could feel the fresh, clean hospital gown against my skin. But more than all that, I could feel the emotional state I was in. This totally-on-the-verge-of- sobbing-all-the-time feeling, but still trying so hard to be positive. ELO helped me. Doesn't that sound corny? But it did. Listening to that music helped me get into a positive mood.

I sat on the edge of my bed, working hard to keep my balance. Our routine was for Jeremy to put lotion on my legs and feet after I showered. I couldn't reach myself. We were given Aquafor to help the places where my skin was splitting from being so swollen, like behind my knees. He put the Aquafor on the water blisters that had formed on my feet from standing just those few moments too. And those were usually the best moments of my day.

Listening to ELO I wanted to cry. "Isn't my body amazing Jeremy?" I looked over at him driving the car. "Yeah. It really is," he responded. He knew what I was saying. I think he knew where my thoughts were too.

"It was just over a year ago and I could hardly walk I was so weak. Now look at me! I'm healthy and strong," I said as I jokingly flexed my arm muscles for him to see. He reached over and felt the muscles (no doubt impressed). I laughed, "Except don't look at the scars on my arm from where the PIC line was." That made me laugh. But really, now, that's an image that will also be stuck in my mind - my bicep muscle flexed, with the scars from where my PIC line was, just barely visible. That says it all.