Plugging away

March 6, 2009

I know it's been a few days since I last blogged. I haven't felt very well this week. I had my appointment with Dr. T on Wednesday. She didn't say anything about "cryptitis." She said that the results of the biopsy showed my rectum was pretty seriously flared with ulcerative colitis. She also said that my pouch looked really good. I told her I was having a tough time and felt like I needed to be dilated again, so we scheduled a dilation for today. I asked her if she is pretty certain I'm going to need another surgery and she said yes. It's just a matter of timing. She wants to wait as long as she can because that's healthier for me.

Jeremy and I went in early this morning for the dilation. For some reason the meds didn't work quite as well and I felt some pain during the procedure, and I remember the pain and the entire procedure too, which usually I don't. She said the opening had definitely closed up and needed to be dilated. She said we should probably start doing the dilations on a regular basis again, but we'll try doing it every two weeks instead of every week (although I'll go next week because she won't be available the following Friday).

While she had the scope in me Dr. T took a look at my pouch and said it didn't look good - that I definitely have pouchitis now too. When we were all done, she said that she would probably look at doing the surgery in June or July, but she wanted to talk with Dr. G (my GI doc). She knows I have an appointment with him on Monday too. She had told us on Wednesday about the possibility of doing the surgery by going up through my rectum instead of cutting me open abdominally. Apparently that's something she needs to research a little more and talk with some more experienced surgeons about. I'm hopeful about that. If that could happen, it would mean I wouldn't have to have an ileostomy again. But Jeremy is telling me not to get my hopes up because it sounded to him like that was a long-shot. We'll see . . .

I'm really exhausted right now. I've been in a lot of pain this week. On top of my health issues, my mom is having some health problems that are scary to me. I'm trying to take it all a step at a time and sort through everything as we get answers, but it's been hard.

With everything, I have to say that it has been a sweet week for me emotionally in a way. My birthday was on Wednesday and people were so generous and so many people have said kind things to me - it's really buoyed me emotionally. I wonder if people have any idea how much their little words of kindness mean? I sure hope so.

I think an attitude of resignation has set in for me at this point too. I'm very tired of being in pain. I want to do whatever needs to be done for me to feel better again. It seems like my poor body just can't get it together!! But I'll keep plugging away!