What a marvel

January 14, 2009

"I'm ready for this Abby," Jeremy said to me on the phone tonight. How can he be ready? How can being with me be worth it for him?

Last night was a rough night for me. My body is exhausted. I had a bowel movement that just took all I had out of me (okay, I had more than one that was too much for me, but this one in particular caused a breakdown). I crawled into bed and sobbed. "I just can't do this any more Jeremy. I feel nauseous for like an hour after I go to the bathroom. I'm so tired. I just don't even want to go on any more," I wept as he put his arms around me.

We talked about a number of things after that. Jeremy said he's worried about leaving me alone now because he thinks I don't want to live any more. I reassured him I would never do anything to hurt myself, but that I needed to be honest about how I'm feeling about life these days. He told me he thought I needed to get in to see Dr. T again. I agreed. He told me I need to keep taking my pain meds. I agreed about that too. Then he just loved on me. He told me how much I mean to him and that we'll get through this.

This morning I got up and was still exhausted from my trips to the bathroom during the night, but I showered and dressed and drove in to work for the day. My stomach was cramping as I sat at my desk. I knew this wasn't going to be a good day. Alexis stopped by to see how I was doing just as I was about to have a mini-breakdown, which I proceeded to do. She came quickly to my side and put her arms around me. I just let go and cried. She talked to me about needing to take care of myself physically. I knew she was right. I needed to go home, so I did. But first I put a call in to Dr. T's office.

When I got home Dr. T's office called me back and told me she could see me this afternoon at 2 p.m. Jeremy was at work, so I was going to go to the appointment alone. That's fine - I'm a big girl. Going to the bathroom on the other hand, that's something that I'm having a hard time doing alone. I know it sounds silly, but I'm in so much pain when I go, it's almost scary to be alone. I sat on the toilet and called Django into the bathroom with me. He walked in and looked at me and turned to leave but I told him to stay. Then I started groaning in pain and crying. He laid down at my feet. I had my head in my hands and he started licking my face. He stayed with me till I was done - God bless him. It's okay, you can think I'm strange.

So I went to see Dr. T. She was so kind and listened to everything I had to say. She told me that I could have pouchitis and she wanted to start me on Flagyl to treat it. She said after 10 days if I was still having problems she would schedule a pouchoscopy to scope my pouch and see what's going on. I started to cry. I told her that I couldn't wait 10 days to find out what's really going on. I said that, although I don't enjoy being scoped, I would prefer to just get the scoping over with and know now what's going on now. She said she could "absolutely" do that. I'm scheduled to have my pouchoscopy done on Friday morning at 10 a.m. She said they would have to give me some drugs to make sure I was relaxed. FINE WITH ME!

So what it comes down to is that 1) either the hole to my pouch isn't dilating as it should and that's why I'm having so many problems; or 2) I have pouchitis and that's why I'm having problems. Dr. T said that if it's #1, she would dilate the hole to my pouch on Friday while I'm there. She said, though, that if the hole doesn't stay dilated and I have to keep coming back for this procedure, she would need to do surgery to revise the pouch. That would mean I would have to have an ileostomy for a few months again, but it would be temporary. She also said that if #2 is the case, she would treat me with the Flagyl, but that she would not be happy that I had pouchitis so soon after my surgery. She said, "I don't want to scare you here, but I do want you to know that there are some people, not everyone, but some people who get pouchitis so frequently that they have to have surgery and have a permanent ileostomy." I told her that did in fact scare me. I started crying again. She told me it was going to be okay.

I sat in the exam room by myself as I waited for nurse LE to schedule the pouchoscopy. Tears streamed down my face. LE came into the room and immediately put her arms around me. Nurse M then came in the room and asked why I was crying. I told her I was scared and tired. She said, "Oh, don't cry." Then she paused for a moment and looked at me. "No sweetheart, you go ahead and cry. I hate it when people tell me not to cry. You cry until you can't cry any more," she said as she wrapped her arms around me and held me for a moment.

I cried on my way home. When I got home I went to the bathroom and called my "anonymous" brother. I asked if he would stay on the phone with me while I went to the bathroom because I just needed a little support and Django was outside. He laughed in a concerned way and then I began sobbing and told him how I just couldn't take this any more. He told me how hard it is to hear me like this. He said he worries that I'm going to do something to kill myself. I told him, as I told Jeremy, that I would never do anything like that. "I want to live and to be happy," I said. But I told him that I just want to be honest about how I'm feeling and that life is pretty discouraging right now. A bout of anger rose up in me and I yelled how unfair all this is. I'm tired of it all. I told him that I hate my body. He listened. He told me he loves me.

We talked again a little later and Jason (my brother) said, "You know Abby, with all you've been through, I'm still just happy that you're alive." He told me how there would be a hole in the hearts of my niece and nephew if I wasn't around. He told me again that he loves me.

My mom called to check in on my day and I recounted all the kindness people had shown me today. I don't think people realize when they do things like put their arms around you or call to see if you need anything, not to mention just saying how much they love you - what a great difference that can make to a person - what a great difference that makes to me. This day would have been hell without the love I received.

And then Jeremy called. I didn't have a way to reach him today, so I was eager to tell him what Dr. T had said. And Jeremy told me he was ready for whatever comes our way. And once again I'm left to marvel at the love . . .