Fragile: handle with care

May 10, 2009

Oh, I haven't blogged in a while because I'm avoiding my issues. Smile. Friday I went to my dilation. I was the last patient scheduled for Dr. T for the day, so she was able to take some time to talk to Jeremy and me. She was very kind, but it was hard for me to hear what she had to say.

She told me she has been thinking about my situation and talking with other surgeons about me. She said there is no question I'm going to need another surgery and it is not an easy one. Its very complicated and requires someone who knows what they are doing. She said that she could do the surgery, but she feels I would have the best chances of a successful surgery if her mentor (for lack of a better term) did the surgery, a doctor who she did a fellowship with at the Mayo in Rochester. I don't remember his name. She said she is willing to fight with my insurance company over this. The question for Jeremy and I to consider is when we want to do the surgery. She said we could continue doing the dilations as frequently as I need and for as long as I want to buy more time for my jpouch to heal before the next surgery.

What Dr. T believes has happened is that the blood flow to the opening of my pouch is not happening, and that's why the scar tissue continues to close there. She said that the surgery would require repairing the jpouch, removing what's left of my rectum, and would connect my j-pouch directly to my anal sphincter. Because this is what would be done, my sphincter muscle could be compromised and thereby cause me control problems in the future.

The surgery would require a diverted temporary ileostomy. That means I would have to have an ostomy again. For those of you who are new to my blog, that means a part of my intestine would be sticking out of my stomach and I would have a removable bag attached to my stomach around my intestine where stool would come out. Typically when you have a temporary ileostomy you have it for at least three months, depending on healing time. After my body has healed appropriately (if it heals appropriately), the intestine is popped back into my body and the whole is sewn up and everything flows freely through me again.

The challenges with the temporary ileostomy last time were nutrition and hydration. With a diverted temporary ileostomy, the spot where you are emptying from your intestine is higher up in your system, so your body doesn't get as much time to absorb nutrients and fluids before it gets rid of everything (make sense?). The last time I had a diverted ileostomy I also had a PIC line and had to do IV fluids every night, all night. It wasn't fun. I also lost my appetite and a lot of weight. Did I say it wasn't fun? =) (You can go to www.jpouch.org for a diagram of the whole thing - it's pretty informative.)

Dr. T said that if I had the surgery done in Rochester, she could do the second takedown surgery here. The surgery would require about a week's hospitalization. She said that they have an incredible ostomy team in Rochester. This is a surgeon she would feel comfortable having operate on her - a surgeon's surgeon. I started crying and told her it meant so much to me that she cared enough to make this recommendation for me. She got tears in her eyes too.

So I'm trying to wrap my head around all of this and what it means. I've got to keep my distance from these thoughts right now so I can decide first how I'm going to approach this. This afternoon was the first time I started to let myself think about what it means. And I decided, I'm not going to let this freak me out. I'm not going to let it devastate me. This is something that is going to have to happen, and I'm just going to live with it, adjust, and move on with my life.

Dr. T said she wanted to be sure I knew that there was a chance that the surgery wouldn't be successful and I would end up with a permanent ileostomy. She said she wanted me to know that there is a possibility too that years down the road I will have to have a permanent ileostomy too. She just wanted me to know that. I told her I understood (whatever that means).

This is something that I have no control over. I am not going to let this ruin my life. There is no shame here. This is what I'm telling myself. This is a fragile conversation I'm having in my mind right now. I am still going to live a full and productive life.

And so we get to today, Mother's Day. Today has been a sweet day. I've been focusing my attention on my mom today. I've been thinking about all the nurturing she has given me, the love she shows me, and how much my relationship with her means to me. I feel like I understand my mom so much more after becoming a mother myself. I understand the depths of love a mother feels; what a mother is willing to do for her child; all the sacrifices being a mother takes, and it makes me feel so grateful to her for all she's done.

Last year on Mother's Day I was in the hospital and had had my colon removed just a couple of days before. I had lost Harper just a couple of weeks before too. It was a horrible, horrible day. I spent the day sobbing; the kind of sobbing where snot doesn't stop running the whole day. Today has been a much better day. I'm in a better place. It was a beautiful, peaceful day.

I've really needed my space emotionally this weekend. I haven't talked much to other people. I've just really needed to sort through things and do this sort of pep-talk with myself. It's like I need to gather all the edges before they start fraying, and spend some time sewing them up. I don't know how else to explain it. I'm not a mess. Maybe I'm still in a little denial, or am avoiding the issues, I don't know. But I guess it's what I need right now.

We meet with Dr. T again on Wednesday for a consultation appointment. We'll be able to ask more questions then. Maybe I'll be in a different place then. We'll see . . .