Reprieve

December 19, 2010

I've been feeling some relief the last few days. I think my UC flare has been dying down. Whew! So not only does that mean my rectal pain has (for the most part) subsided, it also means my bowel movements are no longer like a faucet has been turned on every time I go. Hydration is so hard when things get like that, which means I feel faint and completely exhausted too. When I'm not flaring, I actually have bowel movements that are pretty close to solid and so I'm able to stay hydrated fairly easily. My frequency of bowel movements has gone down now that my flare has subsided too. Instead of getting up every hour and a half to two hours at night when flaring, I am able to get up once or twice a night. I can live with that.

I'm very much looking forward to my January 5th surgery consultation so I can move forward with having the rest of the UC removed from me. I'm also ever so grateful for the reprieve from pain. Thank you God.

Visions of sugar-plumbs

December 17, 2010

My dreams this week have been crazy. I'm almost embarrassed to say it (though I think those of you who are colonless or have bowel issues might understand), but I actually dreamt that I had a normal bowel movement. In reflecting on that dream, I think it was a hopeful sign. I've given a lot of thought to how having the revision surgery may affect me, and one of my hopes is that my bowel movements will be more "normal" as a result. (More "normal" being not going 12 times a day and being able to have bowel movements that come out larger than the size of a pencil - sorry if that's too much information.) I guess that hope has gone deeper into my psyche than I realized.

Then last night I had a nightmare about my upcoming hernia repair. I don't even want to call it a surgery because it's so minor, but apparently I'm a little more concerned about it than I've allowed myself to acknowledge. Last night I dreamt that my surgeon began cutting into me and completely opened me up and I hadn't even been put under. I started yelling, "What are you doing?! Stop! I can feel that!" I'm know that's a pretty common pre-surgery dream for folks, but it still has me shuddering a little.

So here's to an upcoming night of sweet dreams. Visions of sugar-plumbs would be okay too.

Healing for everyone

December 14, 2010

What time is it? 4:13? Oh man. That's way too early. You've got to go back to sleep. Lay on your back. Yeah. That'll help. Then you won't have to feel like you have to go to the bathroom so badly. Oh boy. Remember what sleeping was like when you had your ostomy? Remember how you couldn't lay on your left side like that? And no sleeping on your stomach. Are you sure you're up for that again?

I could feel my heart beat in my chest. I could feel my breathing quicken. Relax Abby. Don't think about that. Think about something else. I lay in the quiet and hear the thickness of the air around my ears. I focus on the pattern of both Jeremy and Django's inhale and exhale. I wonder if I'll have to have a PIC line again. I wonder if my sleep will be encumbered by tubes from my arm to a bag of fluids. Jessica has a PIC line right now because of her pregnancy. She's 24 weeks. That's when I lost Harper. 24 weeks. She still has some weeks to go before she meets the mark of when she lost her little girl. Oh the fear she's experiencing. . . I get it. I really do.

There's so much fear out there. What was it Jason was saying to me about Blake and lost innocence? I need to read those poems. That's how I feel, like pain has stolen my innocence. But that's how we all feel. Everyone is going through something. Everyone. Tara, Emma, Lisa, Maria, Tami, Jessica . . . take a deep breath Abby. Oh God. Why is there so much pain? I just don't get it. I can't even hope for a world without pain, can I? So if I can't hope for a world without pain, what can I hope for? You can hope to handle it with grace. And you can love Abby. Remember? You can love. Keep loving. But it's so hard to love. It really is. It's so hard to open my heart to the pain that other people are feeling. It touches something so deep inside of me. And it hurts. And quite honestly, it scares me. It does that for everyone Abby. Everyone feels that way. But we have to keep on doing it, don't we? Even when it hurts. Especially when it hurts.

Okay God. I'm praying right now from a place of fear and of skepticism and of complete overwhelm. But I'm praying because I have not lost hope that you will hear my prayer. The only things I feel I can even beseech you (if there is a you) for are peace, love, and comfort. Healing would be nice too God. Healing for everyone.

Back to the lab

December 13, 2010

Friday was one heck of a day for me. When I got to work, I just didn't know how I was going to manage another day in the amount of pain I was in. I don't recall being in this much rectal pain since after surgery. I wondered if I needed a dilation, as the symptoms I was experiencing suggested as much. I knew Dr. T was only in the GI Lab on Fridays, so I decided to see if I could get in to see her. But I've got to tell you, just making that decision totally stressed me out because I had to, yet again, leave work early to get it taken care of. I hate doing that. Grrrrr . . .

I also didn't exactly follow regular appointment scheduling procedure to get in. Thank goodness the folks in the GI Lab know me and were willing to go out of their way to help me get in. Jeremy doesn't work on Fridays, so he was able to drive me and be there with me.

They took me back to the prep area and Jeremy sat next to me while I stretched out on the gurney and they started my IV. He's always so entertaining in that setting and I was glad he was with me. Dr. T came back to say hello. "So you're in a lot of pain?" she asked. I fought back the tears as I told her I was. "We'll get in there and see what's going on. We're going to use general anesthesia on you then if that's okay since your pain level is so high." That was a-okay with me. There have been times that I have been scoped/dilated and I could hear myself yell in pain with the conscious sedation drugs. I didn't need any of that right now.

They wheeled me back to the procedure room and the anesthesiologist laughed as I assumed the position. "You really know the drill, don't you?" I smiled, but just couldn't laugh. Tears started to roll down my cheeks as the drugs were administered. I'm just so worn out.

The next thing I knew, I could hear people talking around me. "I'm cold. Could I get another blanket?" I mumbled in an intoxicated manner. "What?" Jeremy asked. Where am I? What's Jeremy doing here? Are they done already? The last thing I knew I was crying, looking up at the anesthesiologist telling him my face felt tingly. Ah yes. I must be done. "What did she say?" I asked Jeremy, but I must not have been talking clearly as he asked me again what I had just said. "What did she say?" I asked.

"She said you didn't need a dilation." I broke down in a full-on sob. "Oh no. No Abby. That's good, right? You didn't need a dilation," he leaned over me and held his face next to mine smoothing my hair as I continued to cry. He doesn't understand. No dilation? "She said your rectum was inflamed though, and she took a biopsy of the tissue in your pouch to see if you have an infection there. She said they'll know in 7 days. If you have an infection she'll put you on a course of antibiotics. But that's good Abby. You didn't need a dilation." I wish he would stop saying that's good. It's not good. It's horrible. "What's wrong Abby?" he said as he kept smoothing my hair.

"If it was just that I needed a dilation then it could have been done and over with and I would have some relief. But it's that the disease is flaring?" I could barely finish my sentence. "I have to keep going in this pain," I sobbed.

I got it together though, by the time we got home. I was just so tired. I'm sure the drugs had messed with my emotions a little too. Always a strange and scary feeling to come to after being under. Nothing a little sleep couldn't help improve a little. So over the weekend I have doubled up on me enemas and have doubled my Cipro intake (both within limits advised by my doctor). I have used the hot-tub several times which has helped manage my pain. I have slept and given myself permission to do very little. This morning I'm feeling a little better. I just hope I'm on the upswing now.

I told Dr. T I am ready for the revision surgery. She told Jeremy when I come in for the consultation she'll explain it all to me in detail so I know what I'm getting into. After the revision surgery there will be no more UC in my body to flare like this. No more disease!! For that I cannot wait.

One girl, one boy

December 10, 2010

Yesterday morning was not a pretty time around our household. This has been a really stressful week for both Jeremy and me. I won't bore you with the mundane details of the pile of stressors that have fallen upon us, but suffice it to say, we we were both at our respective tipping points. The discovery of the breakdown of the washing machine first thing in the morning was what pushed us over the edge and a loud argument ensued. No wait, it was actually this sentence: "Could you call a repairman?" that did it. For my part, if I remember correctly, there was slamming of a couple of doors, tossing my work bag aggressively into the car, and a few curse words uttered outside of Jeremy's earshot. But my memory is a little foggy about it all (conveniently).

On my drive to work I was able to come down from my adrenaline pumping and see what was going on between us. I shot off an e-mail to him when I got to my desk: "I'm sorry I got so upset and stormed around the house this morning. I think we're both really stressed out and trying to prove to each other that we're each more stressed than the other. We haven't been focusing on Team Cashman." I gave him a couple numbers for repair men as an olive branch. We talked later that day and he apologized for his part as well.

Then last night was The Great Cover Up, for which Jeremy performed Dean Martin cover songs at the Rialto Theater with a bunch of other local artists who covered other bands. The whole thing was a benefit for medical expenses for uninsured musicians and artists in Tucson. He was performing earlier in the evening, but still past my normal bedtime. I knew he wanted me to be there, and I really wanted to be there to see him perform. It was one of those things where, yeah, getting a good night's rest for me is incredibly important right now for my health, but doing something for my spouse and that makes me so proud of him is also important for my overall satisfaction of life. So I went.

This is where I'm going to gush about him. The guys in the band all looked and sounded so sharp. Jeremy had shaved and was dressing Dean-like for the gig. They were just a class act up on stage. And then he started singing, and I couldn't help but smile a big, proud smile. What a great crooner voice! I loved it. The band sounded amazing. And then he sang one of my favorites: Memories are made of this. I get choked up if I don't just outright cry every time I hear the line "One girl, one boy, some grief, some joy, memories are made of this." The same was true last night. And I thought that would be the extent of my emotional response, but no. The best was yet to come.

It probably went un-noticed by everyone there but me, but before he began singing another song he said, "This one is for my wife, who is here tonight." And then the music began, and my heart started beating quickly. And then he sang:

Watch the sunrise on a tropic isle
See the pyramids along the Nile
Just remember darlin', all the while
You belong to me

See the market place in old Algiers
Send me photographs and souvenirs
Just remember when a dream appears
You belong to me

I'll be so alone without you
Maybe you'll be lonesome too and blue

Fly the ocean in a silver plane
See the jungle when it's wet with rain
Just remember til you're home again
You belong to me

Fly the ocean in a silver plane
See the jungle when it's wet with rain
Just remember til you're home again
You belong to me

I kid you not, as I stood there swaying back and forth to the gentle melody, my legs were quivering. It was such a declaration of love. A public declaration of love. And I'll tell you what, there ain't much more romantic to me than that, especially coming from such a private man. I might even go so far as to say I swooned a little (smile).

But there was more behind that song for me than the public declaration of love too. He and I had talked about that song, how it was one he played on his acoustic guitar for me in our backyard as we sat out there with a fire in our chiminea one morning shortly after I had gotten out of the hospital and was recovering. The line "just remember till you're home again, you belong to me," was the kicker. He played lots of songs for me when I was in the hospital about being home again. The man knows what gets me. He knows what speaks to me.

One girl, one boy, some grief, some joy: Memories are made of this.

Trying it on for size

December 9, 2010

Now that I've made an appointment with Dr. T to consult about the j-pouch revision surgery, I've been living in a different mental space, preparing myself for life with an ostomy again. I am determined not to let this rock my world the way it did the first time around. You can do this Abby. You can handle it.

There were lots of things that made life with an ostomy difficult for me, one being that I never got a break from it. I could never just turn off the juices in my system and take my bag off and be free. It always had to be there, attached to my stomach, collecting bile if nothing else. It didn't take long for it to fill to a point that I could feel it bounce against my side as I walked. It was like I had a six inch long, four inch wide water balloon attached to me. Granted, I rarely let it fill up entirely before emptying it (if that happened it was usually at night when I was sleeping), but you get the picture.

Then there was the art of emptying the bag. Oh how soon I forget! It's not like you take the bag off and empty it that way. Oh no. The bag stays attached to your stomach as you unclip and then unfold the bottom of it and lean just so, so that you can empty the contents between your legs into the toilet. Without sounding too crude but wanting to give you an accurate depiction, let me just say that the scent associated with stool that has not been fully processed through one's colon carries quite the odor with it.

By far I think the hardest part of having the diverted ostomy for me was how quickly food went from my mouth to my bag. I kid you not, many a time I sat at a meal with friends or family and had not finished my meal before I began to feel the contents of my dinner begin to fill my bag. (I ate a lot slower then because I had to meticulously chew my food so I wouldn't get an obstruction.) I lost my appetite as a result. Seriously lost my appetite. I was losing around 3 pounds a week, and that was with me trying to gain weight. Hydration was hard then too. I felt faint throughout the day every day. And that was with me doing a liter of IV fluids every night at home.

I will say though, when I had my end ostomy (called an end ostomy because the part that stuck out of my stomach was the very end of my small intestine), that was not a problem. The food had further to travel and took longer to process before it reached my bag. I was actually able to get up to my pre-UC weight when I had it. If I have the revision surgery, I will have a diverted ostomy, not an end one. With a diverted ostomy, a hole is made somewhere in the middle of the length of my small intestine and pulled through a hole in my stomach to divert my stool from going through the rest of my system where other revisions have been made so those revisions can heal. Make sense?

My understanding is that one of the main risks in doing the revision surgery is that the veins (or whatever they are technically called) that supply blood to my j-pouch will not be long enough after the j-pouched is revised. The j-pouch can't function without that blood supply. If that happens, the surgery would not be successful and I could end up with a permanent end ostomy instead. I've been told the risk of that happening is low. I have heard of people in that situation whose surgeons attached the vein to the inside of the abdomen for a year or more to try to stretch it out so that the revision surgery could be completed later, though it didn't always stretch as necessary. Crazy huh?

This is where hope comes in to play for me. I am not going to live in fear of the worst happening. I'm going to hope for the best. I'm going to have faith that if the worst does happen, I will summon the strength and (intestinal) fortitude to move forward with my life. Even if the revision isn't successful and I end up with a permanent ostomy instead of a temporary one, the disease will be gone from my body. I can't help but believe that I will experience better health regardless. People with permanent ostomies are active, vibrant people. I will be one of those people, no matter what!

I know I'm writing this as though I've already decided to do the revision surgery, but I'm not 100% there yet. I'm trying the decision on for size right now. So far, it feels like the best fit of all my options. My appointment with Dr. T isn't till January 5th, so I've got a little time to check out the fit in my full length mirror.

Diary of a non-wimpy woman

December 8, 2010

The psychological aspect of pain is taking its toll on me. I used to think pain was just a physical thing. It was easy to think that way when the pain I experienced was short term. A sore throat maybe, sprained ankle. Throw in a migraine here and there and that was as bad as it got. Migraines were the worst, but I knew they would end. It feels like I've been dealing with pain in one form or another for a long time now, and it's exhausting me, both physically and mentally.

If I could just figure out how to get a handle on the psychological part of it, I know it would help a lot. So what are you telling yourself about it Abby? What's so distressing about it? I tell myself that I'm not tough enough. If I were just a little tougher, none of this would bother me. It's because I'm a wimp that I'm in pain.

Boy, just writing that makes me realize how untrue it is. I've been through hell and back with pain. I have not been giving myself credit that I deserve. It makes me sad that I've been so hard on myself. I need to be more gentle with myself. I'm not a wimp. I'm a strong woman who has endured more than her fair share of pain. So maybe that needs to be my new mantra: I am not a wimp!!

It was not too late

December 5, 2010

"She was dying." Dr. V's words have been stuck in my head since my appointment with him on Thursday. I knew it was serious. I felt like I was dying. I thought I was dying, I guess I just didn't realize that the doctors thought so too. Dr. V wasn't the first doctor to say that to me either. A year or so ago when I went to an appointment with my OB at the hospital, she told me that the nurses were talking about me saying, "She's the one who tried to die on us." The only time a doctor actually said something like that to me during my hospitalization was in the beginning, when Dr. S told me my situation was a "life or death" one.

On the one hand, hearing those words from Dr. V have provided a sense of relief for me. I wonder sometimes what's wrong with me? Why am I struggling so much with life now, with understanding it all? I'm having a hard time because it all happened so suddenly and because I almost lost my life. And I did lose the life of my daughter. It was just so much. It flipped me upside down and turned me inside out. Completely.

While I may have been, no, was dying, I was very aware of the life force inside me too. For those who were with me during that time, I think they would agree that life was all that was left of me. Everything else that had made up who I was before was stripped away and that life force was all that remained. It's an unreal thing to be stripped down to that point. To see the essence of what really makes me who I am as a living being, man, it's crazy. Because I'll tell ya, we do a lot of fooling ourselves about what makes us who we are.

How Harper fits into it all is still confusing to me. Were we sharing the same life force? Did she have her own little life force that she was trying to hold onto while fighting the disease too? Did my life trump hers? Why do I even spend so much time thinking about these things? Why can't I just let it be as it is? And you know, some days I can. But some days, when I'm thinking about my life and the impact I want to have, or the difference I want to make in this world, I get caught up in the game of trying to figure it all out. I get frustrated, confused, and sad. It's usually at that point that I stop myself. You don't have to understand it all to live a life of love Abby. Just keep doing your best to love. You'll figure the rest out in time. And then I'm able to let out a big sigh. Yes. Love. I can do that.

Angel Dream (Tom Petty)

I dreamed you, I saw your face
Caught my lifeline when drifting through space
I saw an angel, I saw my fate
I can only thank God it was not too late

Over mountains I floated away
Across an ocean I dreamed her name
I followed an angel down through the gates
I can only thank God it was not too late

Sing a little song of loneliness
Sing one to make me smile
Another round for everyone
I'm here for a little while

Now I'm walking this street on my own
But she's with me everywhere I go
Yeah I found an angel, I found my place
I can only thank God it was not too late
I can only thank God it was not too late
I can only thank God it was not too late

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.