Sunday, May 31, 2009

Looking over our shoulders

May 31, 2009

It has been a wonderful weekend. I believe I've found myself again. Last night I sat in the hammock at dusk and enjoyed the silence for a few minutes. I realized then that I feel like me again. I'm not afraid any more. On the one hand, I felt relieved. But on the other hand, I started to panic a little. How could I go through all that I've been through and everything be the same? I just don't feel like I can let that happen. I don't know how to explain it.

At one point in my recovery I felt like I could understand why people would want to leave and start all over somewhere else after going through some sort of major loss; because you don't want to be around everything that reminds you of the loss, or of your dreams for the future. But there's another reason too. It feels impossible to let life go on being "normal." It just can't be.

Jeremy and I were driving home from running some errands this morning. I looked over at him and said, "Isn't it nice that we don't think about being at the hospital any more." He agreed. It seemed like all we could talk about for months after I got out of the hospital (each time), was our experiences of being in the hospital. I know that's how we processed things. And thank God for the patience of our family and friends in hearing us talk about it all the time. But now it's not just right there over our shoulders any more. It's a speck in the distance as we look back. It might come into focus a little more from time to time, but for the most part we are forward looking now. What a relief.

Friday, May 29, 2009

I start walkin' your way

May 29, 2009

My dilation today went well. One of the important factors to me: they got the IV in on the first try and without me hardly feeling it at all! I didn't fight the meds today. As soon as I felt them take effect I shut my eyes and fell asleep.

I told Dr. T that I had started taking the Cipro again because within a couple of days of stopping it my stools became watery again and the frequency increased considerably. She frowned and said, "I won't lie. That's not encouraging news." But you know, I sort of feel like, "So what?" I told Jeremy, if I have to be on antibiotics as therapy for pouchitis, I'll do it - forever. I know of fellow j-pouchers who are on a monthly antibiotic rotation as part of their way of life. I'm sorry, but I would much prefer to do that than live with an ostomy.

This desire to live life to the fullest, coupled with an increased level of energy is going to make Jeremy crazy! I keep coming up with ideas and suggestions of things we should do; trips we should take, businesses we should start, places we should live. I think he panics a little. "I really am not ready for any change right now Abby. I need to know that we're done with surgeries and everything before we make any major changes." He keeps me grounded, even if it does frustrate me at times. I think we're a good balance for each other. Without him, I'd be all over the place doing all kinds of impulsive things. Without me he'd be a hermit. For the most part we meet in the middle and both seem to be pretty happy.

Thursday, May 28, 2009

Pete and repeat were in a boat . . .

May 28, 2009

So I have gone three weeks without needing a dilation. I am so happy about that. And as the time draws nearer to have my dilation done tomorrow, I'm getting anxious. I don't know why. I guess it's because I have to think about my situation. The last few weeks I've been able to ignore it; convince myself that I'm not going to need another surgery. Still, that's what I believe.

It's not that things have been horrible the past few weeks and that's why I need the dilation either. Things have actually been great. But Jeremy and I have decided to act preemptively and to see if that helps me maintain longer periods of time without having problems. So far, I think that's worked. So I'm in this strange place of making myself do something that is not fun at all when I don't necessarily need to in hopes that that will fix the problem in the long run. Does that make sense? I just hope I'm doing the right thing. I get a little scared each time I have the procedure done. All this anxiety builds up in me and then tears start rolling out of my eyes as I lay on the procedure table. It doesn't even feel like I'm really crying. It's just my body responding to the situation. It's strange. And so this ignoring, or denial, or whatever you want to call it is how I'm getting through it. Maybe it's not healthy, I don't know. But it's what's working for me right now.

But I've said all this before, haven't I?

After I posted this blog, I started thinking about my Uncle John who is going through some really serious health problems right now. Suddenly I felt like my challenges are so small. I don't need to wallow in the discomfort of these stupid dilations. I am enjoying my life right now. I am able to enjoy my life right now. What a gift.

Wednesday, May 27, 2009

Faulty thinking?

May 27, 2009

Sometimes I find myself in this weird head space when it comes to deciding whether to try to get pregnant again. Before Jeremy and I decided to try last time, we went back and forth on the issue for a long time. We were pretty ambivalent for a good two to three years. And now, I'm finding myself in that space again. I think about my future and my career and all the things I could devote my energy to, and I think that if I had a baby, I wouldn't have the energy to do those things. I know it sounds shallow, but I think about the lifestyle we live too, and all the sacrifices that we would have to make. Not that I would be anything but happy to make those sacrifices, but sometimes I enjoy my lifestyle and I think, "Boy, I would miss this." I think about the freedom that we have now to do things. And I guess I'm at this point right now too where I'm really wanting to enjoy my life. I've never really felt this way before. So maybe for now, being child-free is an okay, or even good thing.

But then when I get to that place emotionally, I start to feel guilty. How can I go from grieving the loss of Harper to being happy that I'm without a child now? I get this pit in my stomach just thinking about it. What does that say about me? I feel like it says I'm a horrible person. I know that's faulty thinking, but it's still hard to walk myself through these thought processes. Do I need to go my whole life being unhappy where I'm at to show that I loved my daughter? The movie In America is one of my favorite movies. I think it does a beautiful job showing what couples go through in healing from the loss of a child. Anyway, just some thoughts I had been having today.

Tuesday, May 26, 2009

A strange dream

May 26, 2009

I had a strange dream last night. In the beginning of the dream, we had just gotten a new puppy. It was a Dalmatian, and it was probably two or three months old. I started getting stressed out because we hadn't planned for this puppy. Django did fine with it, but we didn't have a fence in the back yard that would accommodate it, we didn't have food for it, and we hadn't planned on needing to invest any time in potty training. Then all of a sudden, the puppy became a child. We already had an adopted child who was four or five years old, and this baby was suddenly in our home too. It was something I had wanted, so I was deliriously happy to have it, but all of a sudden I realized that I wasn't ready for this baby. I didn't have diapers for him. I didn't have a crib. Every time I put the baby down to sleep, he would crawl away and fall or hurt himself. It took me a while to realize that what we needed was a crib. I thought I would make my own crib to make due until we could afford to buy a crib, but then I thought about how babies die sometimes when they get stuck in their cribs. I didn't know what to do. The baby was wiggly, kind of like a puppy, and I had a hard time holding on to him. I thought, "Well I wanted a baby, but this isn't at all what I wanted it to be like." The baby kept wiggling out of my arms and I hurt him when I would try to get a good enough grip on him so he wouldn't fall.
Then I woke up.
Hmmm . . .

Monday, May 25, 2009

Fighting the good fight

May 25, 2009

I just got home from my weekend in Vegas with my sister. It was a wonderful time with her. I don’t know if I can remember the last time I had so much fun. It was much needed.

So Sara and I spent time each day at the pool. In planning for this trip, I first thought that because of the stretch marks that now cover my body as a result of the 100 pounds of fluids I gained within two weeks of hospitalization, that I would not be seen in my swimsuit without wearing Capri pants too. But after conversations with my sister about enjoying our time and being bold and confident in who we are, I decided to wear my suit and enjoy the sun and the water without the Capri pants.

And so I did. I walked to the pool and thought that if I carried myself with grace and confidence, people wouldn’t notice. I did my best. I wasn’t going to let my vanity keep me from having fun. Day two at the pool I began to notice more of the bodies around me. No one looked like me. I still tried to carry myself with confidence, but it was fake.


Day three as we were preparing to head down to the pool, I got teary eyed and told Sara I needed to talk. I didn’t think I could do it one more day. It took a lot of self-talk to go down to the pool like that when what really was going on in my mind was, “I am the ugliest person here.” I just didn’t want to fight the battle again one more day. I wanted to enjoy myself without being reminded and without having to struggle. I did, however, want to enjoy the sunshine and the beauty of the pool. So I donned my Capri pants and joined her. I sat in the sunshine, the heat building. Sara took a dip in the pool to cool off and I sat on the edge and stuck my feet in. We got back to our lounge chairs and I looked at her, “You know, I think I’m going to go change into my suit. I’ll be right back.” And so I did.

When I came down in my suit I got into the water and cooled off. I did what I really wanted to do. If all the people there with beautiful skin were laughing at me or pointing at me behind my back, then that’s on them. I told Sara half-joking, “I always try to make people feel good about themselves.”

I am not writing about this experience so people will respond and tell me that they think I’m beautiful. That’s very kind, but what has to happen for me is for me to believe it myself. And it takes work. It isn’t easy to fight the images (especially in Vegas people!) that surround me every where I go. Every day I have to fight the good fight. Sometimes it’s easier than others.

Thursday, May 21, 2009

Time to have a good time

May 21, 2009

I have been doing really well lately. I'm in very little pain, have loads of energy, and am all around feeling at peace. I'm so relieved because I'm leaving for my mini-vacation with my sister in Vegas tomorrow morning. I was worried I was going to not feel well enough to go, or need a dilation and have to cancel or any number of those nagging fears that lurk around for me from time to time.

But all is well and I'm going to enjoy a much needed, much anticipated break! I finally feel like I'm in a place where I can just have a good time.

I'll keep you posted . . .

Tuesday, May 19, 2009

Going out on a limb

May 19, 2009

I have had moments the last couple of days where I've caught myself thinking, "I'm all better!" I've been feeling so good. I am enjoying my life right now. I don't know what's happened to me, but I feel a strong desire to live fully in each moment. I know I've been talking about that a lot lately, but it's just so true. I can't help but keep saying it. You know what the funny thing is? It's that I have heard that saying before, "be present in the moment," and thought I knew what it meant, but I didn't. I tried being "present" in yoga classes. I thought I understood what it meant. Isn't it strange how you can understand something but not really get it till you've experienced it?

What is this awakening that I'm experiencing? How did I live my life before? I just don't get it. And do other people understand what this is all about? How come no one told me before? I felt that way about being pregnant too. How come no one told me how amazing pregnancy was? Was I just not listening? I'm sure I was, but there are some things that you just can't know the truth of until you experience them.

I feel that way about my "faith" now too. I was reading the blog of a friend of mine today (www.jachristiansen.blogspot.com) and it totally took me back to my experiences when I was in the hospital. I'm sure I am not as articulate as he is, but I'll at least try to describe the experience to you - I've tried before. (Perhaps practice makes perfect?)

There was this peace that settled deep in my soul when I was in the hospital. Yes, my body was in excruciating pain. My mind was in anguish. But my soul, my soul was at peace. There was a movement forward, a fight, a resolve, that took over inside me. Just thinking about it right now, my heart is racing and my eyes are welling up with tears. I feel so tenderly towards the memory of myself in that situation. Does that seem strange? (Well I feel it nonetheless.) I kept pushing forward when there was no push left inside me. That to me, was God in me. God, the life-force.

At the same time, there was death in me, literally. My daughter died inside me. But there was peace like I have never known when that happened. Sorrow, yes, but still peace. Just thinking about it now comforts me. What is peace anyway? And where does it come from? Is it the lack of fear or anxiety? Is it acceptance? For me it was a feeling that even if the worst happened, I would be okay. But where did that feeling come from? Is peace a mental reaction to some cognitive process? Is it an emotional response to some sort of stimuli? Is it some metaphysical experience? I guess that's one I'm going to have to think about a while, and believe me I will be thinking about it.

Every day when I was in the hospital I was told people were thinking of me, meditating for me, praying for me, sending positive energy my way. Those feelings, thoughts, prayers, whatever you want to call them; they fed the life-force in me. They kept me going. They were love. Love is the most important thing in the world. God is love. God and love to me are the same thing, not just one thing describing an aspect of another, but equal, exactly the same. Every time I experienced love from others, I was experiencing God. So we have the power within us to share God with others, just by loving them! (In fact I believe that is the main purpose/power of God - that's what he is - love.)

These are the things that I hold true. These beliefs that I have faith in now may or may not align with all the other tenants of religion that I used to hold on to and look to for direction. Quite honestly, the rest doesn't matter to me any more. This is what I have experienced to be true. I'm sure as I continue on in my journey in life I will have more experiences that will enlighten me too. I by no means believe I'm done learning. But I feel so freed inside. To believe something because of experience and not because it was taught, that makes it real. You might say that means I have no faith then if I'm only believing in things because I've experienced them. Right now, where I'm at in my journey, I believe that's why we're here. To learn through our lives. Perhaps learning about faith is my next step, who knows? But for now I'm at peace with where I am.

You know, as I go back and read through this blog, I feel like I'm sounding all preachy. And I know where that tenor in my "voice" is coming from. I'm feeling defensive. I'm scared that all the born again Christians in my life are going to take offense at what I'm writing or judge me and think I'm going to hell for what I believe (or don't believe) and I'm already completing my arguments in my mind (and my blog) about why I believe what I believe. I wish I didn't have this hang up. I'm sorry. (Am I playing out a self-fulfilling prophecy here or what?) What I really wanted to share in this blog was something beautiful that I experienced. But I'm afraid my own hang-ups with religion have gotten in the way and messed it up. I really am sorry.

What I want to say is that while I might write about all my pain and suffering in this blog, I am really deeply grateful for every last bit of it because it has allowed me to experience God in a way I never had before. And that has changed my life.

(If this blog doesn't make a lot of sense to you, just ignore it. I think there's an internal dialogue going on in me that you are only getting to hear half of. I'm too tired now to sort it all out anyway. I'm tempted to just erase the whole thing, but I'm going to go out on a limb here and leave it. Anyway.)

Monday, May 18, 2009

From the bottom of my heart

May 18, 2009

I've been thinking about my blog lately. There's something I want people to know who read it. I'm thrilled that people read my blog. Whether I know you, or know of you, or you know my mom or dad, or you're the parent of one of my friends, or I went to high school with you or any of that - I'm thrilled. I don't want people to feel like they are being voyeurs or anything like that for reading it. This blog has been a life-line for me. It has given me a purpose. If what I've been through has educated you, or if it has made you grateful for your beautiful children, or if it has made you feel less alone in your grief or pain - then what I went through was not in vain. If it has challenged you or made you think about things in a different way, then I would be beyond thrilled. And heck, if you just find it an interesting story, I won't complain about that either! Quite frankly, writing is a passion of mine and keeping this semi-daily blog has challenged me to be thinking and writing more than I otherwise might have.

So I just want to take a moment and thank those of you who tell me that you've read my blog even just once. It fuels my hope that I might make a difference in some one's life. Hope is what I'm powered on these days. So from the bottom of my heart, thank you.

Sunday, May 17, 2009

So be it

May 17, 2009

I have done my very best to be present in each moment this weekend. Any time I found myself starting to get anxious about the future, I reminded myself of where I was and what I was doing in that moment.

This morning I had a lot of energy (strange since I was awake from 3-5 a.m.). It felt so good. I put on my tank top and shorts and went to work raking and pruning the yard. I could feel my heart beating, pumping blood through me. I worked hard. I felt a little of that runner's high I used to get after a good run. God it felt good! I was so thankful. I felt like I couldn't stop smiling. I honestly don't remember when the last time was I did yard work. It's one of those things that became unimportant. When you have little energy, you quickly learn how to discern what you want to expend it on, and yard work and house work were not high on my list.

I think that's an amazing thing that's happened to me through my whole health ordeal; I am no longer as stressed out about meeting these super high standards I've had for myself. It is the most freeing feeling in the world. I have this deep down knowledge in the very fibers of my being about what's really important and what really matters, and the rest I just don't care about any more. I want to be present in my life. I want to enjoy each moment for what it is.

You know one major thing that contributed to me getting to this point? It's all the love that I received from people when I was in the hospital. People loved me, not for what I was doing or for some goal that I had achieved. Nope. People were showing me love just because. God knows it wasn't because I was beautiful or smart or funny - because as I lay in that hospital bed all beat up and tired, I was none of those things. (Okay, maybe I was a little funny when I did my arm lifts to try to get the fluid to leave my hands - I sang the Rocky theme song and punched my big fat swollen hands in the air like a boxer. I thought I was funny anyway. I'm sure when my family members laughed they were laughing at the fact that I was laughing at myself.) And yet the love poured in. That is a gift. It changed my life.

So I'll take what goodness I can. There are not a lot of things that I believe and know to be true about God for myself. But one thing I do believe, is that every good thing comes from God. If this is where my faith starts, then so be it.

Saturday, May 16, 2009

Someone there with me




May 16, 2009

It has been a really good day today. I have a lot of energy and very little pain! That's a great combo.

For some reason today I want to share a little more about life with an ostomy. I know people are curious - who wouldn't be? Some of you I'm sure have had experiences with people with ostomies, so this won't be new. I know I'm not alone out there. Although sometimes I am curious about the percentage of people in the country who have an ostomy at any one time. When I'm in large groups of people I look around and wonder. You really can't tell just by looking at someone. Ostomates get pretty good at disguising their appliances. I had a couple of friends that I made after my surgery and I didn't tell them till months later. They had no idea.

Oh, I just now remembered what started my train of thought in wanting to share more about the whole ostomy situation. Last night I drank a hard cider for the first time in a really long time. There are still certain foods that I'm afraid of. Carbonated beverages are one of them. When I had my ostomy, I had to avoid foods that caused me gas, especially before bed. There were a few times that I ate something gas producing (you wouldn't believe how much carbonated beverages, chewing gum, etc. causes gas) and went to sleep, only to wake up with my ostomy bag filled with air like a balloon. You might think that's kind of funny, until you have an experience of having your stool filled ostomy bag spring a leak because the seal got pulled away from your skin because of too much gas.

When I had my ostomy, gas was one of the trouble makers. Another problem that was really hard for me to deal with was that I could feel stool coming out of me and filling my bag. It totally killed my appetite. I'd be sitting down to a meal that I had been looking forward to and maybe twenty minutes later stool would start emptying before I had even finished the meal. I've told family and friends to imagine eating every meal sitting on the toilet going to the bathroom. Makes you want to chow down, doesn't it? Right.

So the ostomy bags (they are really called appliances, but I use the term ostomy bag because I think it's easier for people to imagine what I'm talking about) are plastic and about twelve inches long (though you can get smaller ones, but you have to empty them more frequently - and when I say more frequently I mean maybe every hour or hour and a half). There is a plastic clip that you clip the opening of the bag closed with. The plastic clip is about two to three inches long and maybe half a centimeter thick. The clip was sometimes more troublesome than the bag itself because at least the shape of the bag wasn't solid like a clip. There were certain pants that I could no longer wear because you could see the clip at the top of my thigh.

The ostomy bags have a wafer of adhesive on the back of them which you can cut a whole in to fit the size of your stoma (stoma being the nice word for the part of your intestine that is sticking out of your abdomen.). The adhesive is amazing. When I wasn't having problems with my stoma, I could use one bag for three or four days. The adhesive stuck that long. You can also buy ostomy bags that are pre-cut, but my stoma was never the exact sizes that they sold, so I had to always buy the cut-to-fit ones.

The ostomy bags that I had to use were see through. I hated that. I had a reaction to the adhesive on the ostomy bags that were opaque. Sometimes it was worth it to get a rash just so I didn't have to look at the crap in my bag all the time. And when I say all the time, I mean any time I went to the bathroom (every couple of hours or less) to empty my bag. There's just something that happens to your psyche when you have to look at shit all day long. Hmmm . . . I suppose it's similar to changing diapers all day, but different.

Another thing that was tough on my psyche was that I could see what I ate coming through me. Sometimes it was funny, "Hey Jeremy, I just passed a black bean!" Sometimes it wasn't so funny, "Hey Jeremy, are those my pain meds in my bag and they didn't even get digested?" Yes, Jeremy was intimately familiar with my ostomy bag and the contents therein. It was scary too. The stoma's opening was smaller than a regular person's anus, so you had to be careful to chew your food and eat foods that could process fully, or you risked a blockage. I never had a blockage, thank God. People get through them, they don't kill you, but they can be painful.

I was told that if I ever got a blockage I was to go immediately to the nearest ER.. I had a printed out list of instructions to give to the ER folks explaining to them how to deal with the blockage. Man did that freak me out. No way was I risking anything to get a blockage. Every bite I ate I sat and thought about it, worried that if I didn't chew enough I would end up in the ER. These are some of the major reasons that I got down to 127 pounds on my 5' 8.5" frame.

Then there was changing the ostomy bag. That was quite an ordeal. I hated doing it. Jeremy knew how much I hated it, so he took over the process. We had to cut the adhesive on the new bag so that it fit just right over my stoma. Too big by the tiniest increment and I would spring a leak. Too small by the tiniest increment and it would hurt and slide around and spring a leak. We would remove my old ostomy bag and throw it in the trash, praying that we picked a time to switch bags when I wasn't spurting out much stool. There were times that we would have taken the ostomy bag off and right away stool would start coming out of my stoma. I would lay there and keep wiping it up, waiting sometimes 20 minutes to a half an hour until it slowed down enough for us to get the new bag on. Did I mention I hated that?

After the new bag was finally attached, I had to lay with a heating pad on it for about twenty minutes to help ensure the adhesive was doing it's magic. This was a step that we could have skipped, but our ostomy nurse told us that doing this helped the seal the most. I was willing to do whatever I could to avoid a leak.

And still leaks happened. But I don't want to talk about that right now. Those are some horrible, horrible memories. But what can you do?

I write about this now because I no longer have an ostomy. There were very few people that I could share these details with when I had my ostomy. I was too ashamed. I purposefully waited to start my blog until after I had my takedown surgery. But I don't want to be ashamed any more. If it happens that I have to have an ostomy again, then so be it. Jeremy keeps telling me, "At least we know now which bags work best and how to do it all." He's right. That's true.

And can I just take a moment here to recognize the patience and commitment of my husband? There has never been anything on his part but a desire to help me deal with all of this as best as he could, and for me not to feel alone. He hated seeing me sob when my bag started leaking. Seriously, he would get more stressed out about whether the seal was good than I would. He hated it that I was losing weight and so distraught psychologically over all of this. And that's what relationships are supposed to be about - helping each other in any way possible. That's the beauty of them. We all have to work through our issues. It's just so much easier when there is someone there with you, loving you and helping you along the way.

Friday, May 15, 2009

But still I try

May 15, 2009

This is a good moment. For that I am thankful. My brother-in-law Roy is here visiting for the weekend. Roy, Jeremy and I went to the Barrio Brewing Company for dinner. It was so relaxing. We sat out on the patio and watched the trains go by ($1 off pints whenever a train passes by - kinda fun). The place was buzzing, so many smiling faces, happy to be off work for the weekend. As we were leaving another train was going by. A woman, probably just a little younger than me, squatted down on the sidewalk near her just barely walking daughter wearing pink crocks and a sundress. The mother pointed to the train going by and as the sound got closer and closer the little girl backed into her mother for safety. I thought, "Oh, I want that," and turned and looked away.

We were listening to Bonnie Prince Billy (sp?) on the way home. There was a line in one of the songs to the effect of "I could have been a father." It caught my attention, but I didn't comment on it. I didn't want to ruin the mood of the music as Jeremy and Roy were listening. But then Jeremy commented on it. "That's something I can relate to," he said. I patted him on his knee and smiled.

We notice things now. Like we're pointing at an object in a department store window as we walk by. A fleeting wish will follow, but the reality of the empty piggy bank at home is ever present, so we don't stop to stand at the window and stare. Why tantalize ourselves? Not now. Maybe later.

I was having very real memories of life with an ostomy on my way home from work this evening. They were tactile memories. I could feel the bag hanging off my side. I could feel the peristalsis of my stoma. I told myself to stop it. I don't need to remember that. I don't need to try to imagine life like that again. Dr. T said at the end of our appointment on Wednesday that she wanted me not to worry about things, but to enjoy my life. "That's what I want; for you to just enjoy your life, okay?" She was so kind.

So that's what I'm trying to do. I'm stopping myself in the middle of a moment and awakening to all that I have; to the goodness in the moment. Because when you really stop in a moment, what could be so bad in that moment? (So long as you aren't in pain, right?) Easier said than done, but still I try.

Thursday, May 14, 2009

Where we stand now

May 14, 2009

So we had an appointment with Dr. T yesterday afternoon. Basically, I asked her if there really was nothing else that could be done other than surgery to fix the problem. She said we can keep doing the dilations, but she doesn't believe that they will provide a permanent solution to the problem. She said that in addition, there is a risk of perforation every time I have a dilation done, which is why she wants to be the only person who does the dilations on me.

She said she's willing to continue to do the dilations as long as I want, but that surgery will be the long-term solution. We talked about where the surgery would be done, what kind of stoma I would have, recovery time, etc. When we left, we decided that we will continue with weekly dilations (except she's gone this week and I'm gone next week), until around October sometime. Then in October we'll plan for the surgery. I'll have a temporary diverted ileostomy for two to three months, then Dr. T will be able to do the ileostomy takedown.

The surgery will remove the remainder of my rectum. That means that if I have the same problems with strictures again, I'll be able to do self-dilations every day if I need to. With my rectum gone I won't have any more UC in my body. That will be good as it will also significantly decrease my chances of cancer.

Dr. T thinks that pouchitis isn't an issue for me. I've had it once confirmed by a biopsy. We decided to go off the Cipro (which was treating pouchitis) and see what happens. She said that unfortunately, if I have pouchitis chronically, the surgery won't solve that problem. Antibiotics can treat the pouchitis, but if antibiotics stop working, then we would be looking at another surgery to create a new pouch, or the possibility of a permanent ileostomy. But that's not a problem that I'm worrying about right now. That's just one of those possibilities.

That's where we stand now. I'm still hopeful that the dilations will help. I'm not giving up hope yet. Jeremy said that he needs to think about the surgery as if it's what's going to happen. I understand that. We'll just have to balance each other out and be there for each other no matter what happens. Even if I have to have the surgery, I'll be okay. I know I will. I have to.

Tuesday, May 12, 2009

I don't believe it

May 12, 2009

I felt pretty good today. I'm a little nervous about my appointment with Dr. T tomorrow, but I'm sure it'll be okay. I've got my questions I want to ask. I just don't yet believe that I'm going to end up needing this surgery. I'm going into the appointment tomorrow with that attitude. I haven't given up hope yet.

Monday, May 11, 2009

I don't need more

May 11, 2009

My mind has been playing a little hop-scotch on me today, trying to land on just the right thing, that one thing that is going to make me happy. I'm playing out all kinds of scenarios in my mind. But I just can't steady my balance on any one thing. And then of course I just get frustrated with every little thing I'm doing that is NOT the thing that I want to be doing that would make me happy.

And as I'm sitting here in the silence of my home, Django sleeping on the floor, the sound of the fan whooshing overhead, one lonely light on in the room, all I can think of is that this should be enough. This is my life, what is happening to me in this very minute. I don't need more. I don't need more.

The quiet does things to me. It slows me down inside, mellows me. I yearn for it sometimes. I really do. This is what I want, more than anything, this peace that I'm feeling right now in the stillness of my home. I'm lucky. Right now, I have what I want.

I had a dream last night. Some old friends and I were walking through a neighborhood trying to find my apartment. We all started singing Amazing Grace together, loudly, almost as if we were drunk, but we weren't. I was weeping as I sang. And then we got to the verse, "When we've been there ten thousand years," and I started making up my own lyrics about how I would have held my daughter in my arms. I was singing it at the top of my lungs, freed by singing so loudly, and I realized that one of my friends was also changing the lyrics to sing about his child that he had lost. I hadn't known that he had lost a child, and I looked over at him, but we all just kept on singing. And then I woke up.

We are none of us alone in our pain. We might think we are, but we aren't. Why don't we reach out to each other more? Why don't we share more of the pain that we're experiencing so others can comfort us? Why do we try to do this alone? There's just so much goodness to be given and to receive. It's out there. I got cards and flowers and phone calls and e-mails from so many people yesterday; people who thought about me and my loss during their time of joy and celebration. There are some good souls out there. I'm so very grateful.

I don't need more.

Sunday, May 10, 2009

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 . . .

Thursday, May 7, 2009

Not just a river in Egypt

May 7, 2009

I've been having a tough go of it lately. My hospitalization over the weekend drained me. I need another dilation, which I have scheduled for tomorrow afternoon, thank God. When I need a dilation it's like going to the bathroom through a straw. With that in mind, I'm sure you can picture the straining that I have to do to evacuate (as the doctors say). So there's a lot of pain in going, but there is also pain that results from straining, such as hemorrhoids and hernias. Both of which hurt, an awful lot, both of which I have right now. (TMI? Sorry.)

To top it all off, yesterday I had a migraine. It was a strange one for me. Usually when I get migraines I sit or lay in one position and can't move without throbbing and nausea. Yesterday's migraine, however, was one of the roaming type. For some reason, I could not sit or lay down without the throbbing happening. So I had to walk. The light was killing me. I turned out all the lights in the house, pulled the curtains closed, turned up the AC, placed an ice pack on my head, and walked throughout the house, back and forth from the kitchen to the bedroom. Django was a little confused at first, but eventually found a spot to lay down in the middle of the hallway where he could keep his eye on me no matter where I was going.

I walked in the darkness and the silence, aware of every bit of pain I was in; pelvic pain, hemorrhoid pain, migraine pain, pain from the blown vein in my arm (which I had to have raised as I was walking so it too didn't throb), joint pain from my UC. I couldn't escape any of it. Something very strange happened to me while I was walking in the dark. I felt like it was me and my pain, just the two of us, alone, fighting it out. I was exhausted, but I was patient. I prayed out loud, "Oh God, oh God, oh God." (Sometimes that's as far as the prayer gets, but I think that's all that's needed.) Then I started singing quietly, hymns from my childhood. Hymns that my mom used to sing around the house. Words, melodies, scenes in my mind that comforted me.

I would try to sit down and see if the pain had passed, but it hadn't. As soon as I sat the throbbing started. At one point I felt as if I was walking around carrying a crying baby, trying to calm her down, knowing that I couldn't stop moving or she would start fussing again. It made my heart ache to think about, so I stopped.

Then I stopped walking at the end of the hallway and I stood there. There was the faintest light from the outside night lights shining through onto our living room wall. As I looked at the light my vision started quivering. When I tried to focus on the light it just became more blurry. And in my pain and in my heartache, I thought I could see beating wings in the pulsing of the light. I stood in the comfort of the moment and then started walking again. I thought about how different faiths teach that pain brings you closer to the spirit world. That seemed real to me last night.

And today I'm still in pain. I'm exhausted from the pain. I feel like giving up today. I'm scared. I know that at my appointment on the 13th Dr. T is going to talk about surgery, and I'm scared for that. I just don't know how much more I can handle. And tomorrow is the year anniversary of when I had my colon removed. The ugly, sick thing that it was. The word "colon" is one of the most emotionally charged words there could ever be for me.

And then there's Mother's Day coming up. And I'm sick of my sadness affecting people around me. I want Mother's Day to be the wonderfully happy day that it is! I don't want my family to be sad for me on Mother's Day. I want to be in denial this Mother's Day. I want to pretend like I'm not a childless mother. I want to think about my wonderful mother, not about my daughter. I can't handle the pain of it. I think I'm actually in denial about a lot of my situation right now. I just don't want to deal with it. I don't want to talk about it. I'm sick of it.

So anyway. Tomorrow I get to go get poked and prodded again. I hate it. I'm so tired of it. I sobbed tonight telling Jeremy, "When do I get to do what I want with my life?" I feel so out of control. I hate it. Have I mentioned that?

Oh God, oh God, oh God.

Tuesday, May 5, 2009

Is it okay if I talk to myself?

May 5, 2009

All of a sudden on my drive in to work I felt like someone socked me hard in the chest, emotionally speaking. I started crying. I thought about the fact that I was in the hospital this past weekend and I got really angry. I thought, Oh Abby, you know this is going to happen to you now when you get dehydrated. It doesn't have to be some major crisis. But in my psyche, it was. Saturday night sleeping at home in my bed I dreamt that I was in the hospital, wanting to know what I needed to do to get discharged home. I woke up having to tell myself I was already home.

This new fact of life for me (getting dehydrated easily and ending up in the hospital unable to fight off whatever virus is going around) was one that I was trying to deny. My family called me while I was in the hospital, "Are you okay being there Abby?" "Oh yeah. It's no big deal you know. It's just gonna have to be a part of life that I accept." I didn't want to talk about it. But I'm so angry about it. I'm angry that I had to call in sick to work. I'm angry that I didn't get to go to the folk festival and hear Jeremy play. I'm angry that I didn't get to go to yoga with my friend.

I'm just so frustrated. But what really made me cry was thinking, we are never going to be at a point where we can handle having a baby. It's just too much. I just can't imagine parenting right now. I felt so hopeless. Then I thought, without a baby, what's the point? My life feels so empty. I feel totally at the mercy of my body. Totally.

I can see. I can step outside myself and see what's going on with my thoughts. I can do the self-talk, but it gets sooooooo tiring. I get tired of telling myself the same thing over and over again. It's like, when am I gonna get this already?

So here's my self-talk: You're tired and not feeling 100% today Abby. You always feel down emotionally when you're under the weather. Just because you may not be ready to have a baby right now doesn't mean it will never happen. And even if you aren't able to have a baby, you have a wonderful life full of love. That doesn't have to end.

I came home a little early from work. I crawled into bed with my book and read for a short time and then drifted off to sleep. It felt so good. There are a few nagging things that are bothering me: 1) I need another dilation which is disappointing to me, but at least I already have an appointment scheduled for Friday; 2) Because I need another dilation I've been doing a lot of straining, which comes with some lovely side effects that are causing me quite a bit of pain right now; 3) The spot where my IV was and my vein blew still hurts, is red and a little puffy and not getting better. Really, it bothers me the most because the pain reminds me that I was just in the hospital and I think about it every time my arm throbs; and 4) I'm still having the pelvic pain and am pretty frustrated that all the doctors have been so dismissive about it. I need to be more firm about getting some answers, even if it's someone explaining to me why it's not a big deal.

(On a funny side note: I got this beautiful watch for my birthday - right? It was more expensive than any watch I've ever owned before. Next to my wedding ring, it's the most expensive piece of jewelry I have (I think). My whole family went in on it with Jeremy. So did I mention that a few weeks ago I ran into a low-hanging tree branch while I was checking the time on my watch? I got a little bump on the top of my head and for about a week it hurt just to make facial expressions. So today I realized I can't wear my lovely watch because of my sore arm where my IV was. I think it's kind of funny. There's a price for vanity, huh? Ha! That just hit me and I thought you might get a kick out of it too!)

Sunday, May 3, 2009

Spirit and body

May 3, 2009

An interesting shift in thinking has been happening for me lately. I've been able to step outside of myself and look at my body from a very detached place. This body is just the container I've been given. I look at the stretch marks or the scars, or see myself heaving into the pink plastic container in the ER and think, "Hm. Poor body. It's really been through a lot." I'm not so scared. I'm not all emotional about it.

But at the same time, I'm also very aware of the fact that my spirit is connected to my body. This morning as I was trying to rest, my mind was racing and I asked Jeremy if he would just hold my hand for a little while. He did, and just that small touch helped me relax. It made me feel safe and calm and I was able to drift off to sleep. The same kind of thing happens to me in other settings, as I'm sure it does to other people too. But for instance, I have a co-worker who puts her hand on my arm or pats my back after we've talked. Those small things make me feel so cared for.

So as I'm sitting here writing about this I'm suddenly flooded with images of times that people have physically reached out to me and comforted me. Why do I remember those things so vividly? Because they touched my spirit as well. Thinking about this makes me want to be more affectionate with people; to be more aware of what I can give and can do for others, even if it's just an arm around their shoulder, to make a difference in lifting their spirits. (As I read through this it sounds kind of sappy, but I really don't mean it that way.)

But then I come back to wondering, how is it that I'm doing better feeling detached from myself physically, yet also feel this heightened awareness of needing affection? Are they opposite ends of the same spectrum? Maybe not? It's a strange thing; this whole spirit/body connection. I guess it's one of the mysteries of life that keep us wondering, huh?

Saturday, May 2, 2009

Much better now

May 2, 2009

As I write, I'm sitting in a hospital bed. Ugh. But fear not!! I'm doing much better and hope to be going home soon (like before the day is over).

Thursday night I woke up around midnight and realized I was having watery diarrhea. It kept going on every twenty minutes or so for the next couple of hours. I woke Jeremy up, "Hey sweetie?"
"What? What is it? What's wrong?" (Poor guy.)
I told him what had been going on. "I think we should probably take you in Abby. We don't want to mess around." So I agreed. As I was starting to get dressed, I also started feeling a little queasy. And then the vomiting hit. We got to the ER. I started vomiting in the triage so they got me back to an ER bed right away and got fluids going. After about 15 hours in the ER and a couple of bouts of dry heaves, they admitted me. My surgeon for the first two surgeries, Dr. V came by and is the doctor following my case as Dr. T is out of town. It was actually kind of good to see him since I haven't seen him since December. The man saved my life, I will always have a great affection for him.
I got plenty of anti-nausea meds which knocked me out good. The nurse and Jeremy were laughing at all the twitching I was doing in my sleep on all the meds. But hey, they did their job!! I had a good night - as good as one can expect with being woken up every two hours to take vitals and an IV that wasn't in quite right.
This morning, just as they were deciding to re-do my IV because my vein blew, Dr. V came in and said if I was feeling well enough to drink and could tolerate liquids and food, I could go home tomorrow. I talked him into me going home tonight if I was doing well. He said he was okay with that. So far so good!
Through the course of this event, I'm realizing that this is just going to be par for the course for us now. When you don't have a colon you can't absorb fluids as well. If you can't absorb fluids and catch some bug that causes fluids to leave you too quickly, a trip to the ER is going to happen. Jeremy was right, we can't mess around. They told me when we got to the ER after only two hours of not being able to keep fluids in me that I was pretty severely dehydrated. They pumped four liters of fluids in me in the fifteen hours I was there - and I didn't puff up at all.
I think the whole thing was easier on me than on Jeremy. He immediately goes into crisis mode and is concerned that something else is happening; something that could be life threatening. But I think with time we'll figure out how to deal with these types of things. I didn't really feel panicked, I just felt sick. But like I said, I'm feeling better now. Keep your fingers crossed that I can go home today! I would be so much happier on the couch in my living room with Jeremy and Django chilling out with me!! PLEASE!!! (smile)