April 18, 2009
I fell asleep earlier than I was planning on last night. I guess that's a good thing. I'm not feeling so great, but I'm just so tired of dealing with it I'm almost stymied. The dilation I had on Wednesday didn't take at all. I'm going to have to go back to have another one, and soon. I'm also worried that the Cipro isn't working any more. I've had an increase in the number of times I go to the bathroom during the day and this pelvic pain is getting pretty bad. Ibuprofen doesn't touch it. But I'm not as miserable as I was before I had this stretch of feeling good. I'm thankful for that.
I got up in the night to use the bathroom. When I crawled back into bed I curled up on my side. I thought about how when I had my ostomy I had to get up so many times in the night to empty it and I couldn't really sleep on my side at all. I always had to sleep on my back. Whenever I have memories of living with the ostomy, this strange thing happens to me emotionally. It's like I'm relieved that I don't have it any more, and I want to let myself experience the gratitude and relief, but I can't even let myself go there because I don't want to remember. It was so hard to live that way. And then the next step is usually that fear sets in that I'm going to end up with an ostomy again (which is possible).
Last night I laid in bed and just kept saying to myself, "You can't control the future Abby. There's no reason to live in fear right now." But I am scared. Every time I don't feel well I get very scared that Dr. T is going to say we can't wait for the next surgery any more and that I'm going to have another ostomy - even a temporary one would be so hard for me to deal with. But I'll do it if I have to - right? I'll do what I have to do. It's just a very hard possibility to have hanging out there in the future. Let it go Abby. Let it go. Ah.
Well, I'm finishing my cup of coffee and have to start getting ready for work this morning. Yep, I'm working on a Saturday - but it's a conference/training, so hopefully it will go quickly and be entertaining!
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Hi Abby,
ReplyDeleteI too am trying not to think about the possibility that I could end with an ostomy again down the road (especially given the trouble that I had the last time with my ostomy!). My pouchitis seems chronic too, and when the Cipro stopped working last month I switched to Flagly, which got things back to normal quickly. I feel great again, but for how long is anybody's guess - feels like I'm always waiting for the other shoe to drop. Maybe it is time to try a new antibiotic? Can you take Flagyl?
I've noticed that my optimism is definitely tied to how well I'm feeling . .. right now I'm very hopeful, but anytime the pouchitis and pain set in things go downhill fast. It is amazing how chronic pain affects your whole demeanor and emotional state.