Lost (not the show)

June 1, 2009

I keep having this dream. Last night was at least the third time in the last month or two that I've had this same dream. I'm somewhere in a city (I think it was Minneapolis last night), and I'm trying to get somewhere else, but I keep getting lost. I ask for help, and people tell me where I am, but no one can really tell me how to get where I need to go. Last night I was roller-skating through the city. I almost got hit by a car a couple of times. My heart was beating so fast as I tried to keep up enough strength and speed to get where I needed to go. When I found a good pace I got excited and thought that I was almost there, only to realize I was lost again. A couple of times I felt like my legs wouldn't move the way I wanted them to and I had to learn how to roller-skate in a different way. It was really exhausting.

Okay, so writing out this dream it seems obvious to me that the dream is a metaphor for my life. I just want to cry because I'm so tired of trying to figure out what the next thing is that I should do; what the right thing is for me to do. And I really do feel lost. Not lost in the present, but lost in the future - if that makes any kind of sense.

I went to see Dr. G today, my GI doctor. When I told him that I hadn't given up hope on the dilations he basically said that not a lot of research has been done about the efficacy of dilations, but that usually people get impatient and want to have surgery done to get it over with. He said he has a patient like that right now, but that patient also WANTS his ostomy back, so he's not worried about having the surgery. Anyway, he said that it could be that with more time the dilations will take.

As Jeremy and I were sitting there talking about it with him, we realized that it's been since almost two months since I really needed a dilation (needed meaning I was in some pain from the stricture). Things have closed up a little on me since then, but it's been bearable. So I felt really good about that.

As far as the chronic pouchitis goes, Dr. G said that if chronic pouchitis can be treated with Cipro, he would recommend doing that, not surgery. He said that if a treatment is working that's what he suggests (makes sense -right?). I asked him about rotating antibiotics with the Cipro. He said that he thinks it's better to stay on one antibiotic, especially if it's working. He said yes, long term your body can get bugs that are resistant to the Cipro, but there are also meds they have now that can treat those bugs too. So that made me feel good as well. I'm currently taking 1000 mg of Cipro a day. He said that for long term treatment, he would recommend trying to go down on the dosage over time and try to get it at 250 mg a day if possible, but it was Dr. T who prescribed the Cipro, and he wasn't going to change her prescription - he was just giving me his input (because I asked).

All in all I told him I've been feeling good. He said sometimes people can look good and they are really very sick, but he didn't think that was true of me. He said I looked good and he was happy to see that. He also said that it seems like the people who were the sickest when they had their surgeries are also the ones who have the most complications, and that I was really sick. He said he'd see me again in 6 months!

I came away feeling very hopeful that I will be able to avoid surgery #4 (and surgery #5 - ileostomy takedown #2). Jeremy was happy about it too, but said that he has to stay prepared mentally for me needing another surgery. It's too much of a punch in the gut for him to hope that I won't need surgery and then find out I do. I told him that I totally understand that and that I don't feel unsupported by him for taking that stance at all. I told him that I need him to be grounded like that. I look to him for that. I think we balance each other out beautifully, and I need that.

So that's where things are today. I'm still holding out hope!