February 6, 2009
I'm at a loss about what to say these days. I feel like everything I'm going to say I've said before. I'm sick of "hearing" myself write.
My appointments on Wednesday went okay. Dr. T wasn't able to do a full dilation on me because it was just too painful. I tried. She said that with the initial exam though she could tell the hole was still open, so that was good. She doesn't understand why I'm in so much pain right now. She suspects I have some nerve damage in my pouch, but she won't know until the end of the month when she has the new equipment to do a study on me. She said that could cause some serious pain. In the meantime she gave me a new medication to try. We'll see.
I had an appointment with Dr. N, the psychiatrist. That went really well. He was very knowledgeable, understanding, funny, and he challenged me a little. He made some changes to my medications and said that he could see me for therapy too if I wanted, which I did. So I'll be going to see him on the 13th for our first therapy session. I'm looking forward to that.
Last night I felt really sick. I was running a fever of 101 and was just in so much pain. I took some of my new meds to help me sleep and slept solidly for about 6 hours. That was good. This morning I went for my weekly dilation with Dr. T at the hospital. She said that the hole to my pouch was still dilated and that she thinks next week might be the last time we need to do the dilation. That's excellent news really. I wish I could be more excited about it, but my pain continues and I'm actually pretty discouraged that the dilations didn't "cure" the pain. If it is nerve damage, she said surgery would probably be needed to fix the problem. She said my pouch was inflamed some and that might explain my fever, so she gave me some antibiotics.
I slept the afternoon away. Barbara woke me to say goodbye when her cab arrived. She was so good to me. I don't know how I would have survived this week without her. Jeremy got home just a couple of hours after I woke up. So here we are, sitting on the couch watching TV. I'm still running a fever and my pain level is pretty high. I'm trying to tell myself that my pain will get better and not to feel hopeless, but it is so hard. It feels like it will never end.
It's hard to keep my thoughts from going to some pretty dark places. I'll keep trying though. It's all I can do really.
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Hi Abby,
ReplyDeleteI'm sorry to hear it hasn't gotten any better. I just started antibiotics yesterday and what a difference in 24 hours. I didn't realize how awful I was feeling and just how much pain I was in until it finally went away. I can't believe how much the antibiotics helped me. It looks like pouchitis was the cause of all/most of my pain, frequency and straining to go and incomplete evacuation.
I hope you have pouchitis too (that sounds strange, doesn't it!) and that the antibiotics make as much a difference for you as they did for me (although I know they won't help the stricture problem). I'll be following your posts.
Now, I just have to cross my fingers that this isn't the start of a whole new set of problems for me . . . chronic pouchitis . . . I'm trying not to stress about it all and just enjoy feeling well and not having any pain for the first time in weeks.
Really? Pouchitis caused straining and incomplete evacutation for you? That sounds like what I'm having problems with, but my Dr. has said she doesn't think I have pouchitis. I did have some inflamation though too. I wonder . . . I'm glad the antibiotics helped you!
ReplyDeleteAbby