December 4, 2010

Thursday morning I had an appointment with Dr. V, the surgeon who did my first two surgeries. His nurse gave me a hug when she was me in the lobby. When she was with me in the exam room she said, "Dr. V is excited to see you." It was so sweet to me.

Dr. V is an older gentleman, with white hair and a strong accent (I believe he is from Columbia?). I'll just admit up front here that I idolize him a little. I mean come on, the man performed a procedure that saved my life. So I'll be honest and say I was excited to see him too. I wanted him to see how well I am. He saw me at my very, very worst, just about every day when I was hospitalized. And while I may not be at my best ever, the difference is no doubt drastic as was apparent when his jaw dropped when he opened the exam room door (though I'm sure he was being a little dramatic too).

"Stand up and let me see you!" he said with his arms wide open. "You look wonderful! Give me a hug!" he said, which I gladly did. "So tell me how things have been going." I refreshed his memory on the different issues I had post-surgery as it was one of his colleagues who did my third surgery and followed me after that. He began telling the student who was with him about me. "She was dying. She was so sick. How much blood did you lose Abigail?" I told him I knew I had five blood transfusions and two plasma transfusions. "Yes. She was dying. That was a very bad time for you," he said with a frown on his face. He explained the course of my illness to his student, looking to me for details and confirmation as he did so.

We talked about the reason for my visit yesterday (a minor hernia that needs repair), and then as his nurse was going over paperwork with me, he picked up the phone and began dictating into the phone. I'll tell you, it's kind of crazy to hear someone talk about the worst time of one's life like that. His voice was grave as he recounted my history and I couldn't help but tune out the nurse and listen to him as I heard him say, "And then her baby died and her symptoms improved slightly, but only briefly. There have been no pregnancies since."

As we ended the appointment, he patted my leg and said, "You made my day." I smiled at him and said, "Well you know you're my hero." I have to choke back the tears when I think about it all.

A profound moment happened for me during that visit. The nurse asked me what my pain level was when she was taking my vitals. Normally, I would have said a 1 or a 2, but their little pain scale with the corresponding faces showing differing levels of discomfort was right in front of my face. Hm. I said I was probably a 4 (but it might have been higher). And then they took my blood pressure and it was high, and I usually have low blood pressure. "Wow. I wonder what that's about?" I said. "Well you're pain is at a 4, so it makes sense to me," the nurse said. Duh Abby.

Something about that little exchange stuck with me. When I tough it out, I'm really not helping myself (again, Duh Abby). Subconsciously I may think I'm somehow more pleasant to be around and so people will like me better or something, I don't know. But no. By not seriously addressing the pain I'm in, I'm hurting myself physically. And that continuing pain wears on me.

Honestly? I'm worn out from not feeling well. Most mornings if I don't just break down and cry, there is some point where I'm fighting back the tears because I'm just so weary. I'm not exaggerating to say I've had probably 3 days in the last three years where I felt good and full of energy. I tell myself I can't feel bad because things aren't as bad as they were. Like if I acknowledge that I feel bad now I'm somehow dismissing the improvement I've made. But the truth is, I don't feel well. I understand that there is a new normal for me. Believe me. I understand, but this new normal stinks. It really does.

So here's where I'm going to unabashedly complain. I'm not going to suck it up and be a trooper. I'm going to tell it like it is. I am so very tired of doing the "rectal suspension" medications (two of them) at night. Almost every night I go through this conversation in my mind: "Just do them Abby. You know they'll make you feel better. Suck it up. Just do it and take your sleeping meds and knock yourself out and you won't even think about how uncomfortable it is."

Sleep is supposed to be a time of rejuvenation, which is really hard to do when you are trying to hold 120 mL of liquid medication in your rectum the whole night through. Rarely do I make it the whole night through by the way. Sometimes I am barely able to hold it ten minutes. If I get past the initial urge to evacuate, I can usually hold it till about 2:30 or 3:00 in the morning when I get up to use the bathroom. That's if and only if I've taken meds to help me sleep.

There are nights when no matter how much I do the talk in my mind, I cannot physically make myself reach for those damn enemas. On those nights I may be able to drift off to sleep with ease, but when I wake up, I'm in pain. Pain. I try to downplay the pain too. I've been wondering lately how much having UC in that small part of my rectum affects my overall sense of well being, not just when I know it's flaring (which is anytime I'm not doing the enemas), but when it's under control too. Is the fact that my body has that disease in it making it that much harder for me to fight off other things? Because it seems that I have one health issue after another these days. Is it just that I'm getting older? Or maybe it's just that I'm emotionally worn out from it all and so the minor health issues seem huge to me? I don't know.

As I'm pondering these things, the discussion about whether to have the revision surgery to remove my remaining rectum and re-do my j-pouch so it has a bigger opening for evacuating has begun. It's on my mind all the time. I'm in constant pain and so that's what I think about.

Jeremy and I have also renewed our discussions about the surgery (or surgeries because there would be two). The discussions aren't easy for me. He tells me all the time that the decision is mine as it's my body and he'll support me no matter what. "But what if I fall in that small percentage of people who end up with a permanent ostomy? Will helping me with that be too much for you? Will you still find me attractive? Will you resent me and all the care I require?" He tries to reassure me, but my fear makes it hard for me to hear him. He tells me that he has always known we were going to get old together and that we were going to be taking care of each other down the road anyway.

But I'm afraid. It may be my body, yes, but it is our relationship. And what I do to my body greatly impacts our relationship. He's been taxed so much by all we've been through. He's the one I've turned to the most. That wouldn't change with another major surgery. This surgery would mean that for at least three months I would have another temporary ostomy. I relied on him to help me with a lot of the care of the ostomy in the past. But really, he helped me because emotionally I couldn't be left to face my intestine sticking out of my abdomen by myself. Yeah, when there were complications with my ostomy he helped because we needed four hands to deal with the leaks and such, but for the most part his help was due to my emotional needs.

I am in a different place emotionally now than I was then - thank God in heaven for that. I realize that if I have this revision surgery now, how I handle it emotionally is going to determine how it affects our marriage. And if I choose to do this, I know I can handle it. It will be stressful for us, but it doesn't have to be as stressful as it was before. I know what I'm getting into this time. I know what to expect. I also have a lot more support in the ostomy world now than I did when I was in the trenches before.

So I have a consultation appointment with Dr. T about the revision surgery, just to explore it further (again). I'm making my list of questions that we have for her. I guess we'll take it from there. One step at a time. I applaud you if you've managed to read this entire entry. Writing it sure has been helpful to me.