Sunday, October 30, 2011


Having a rough evening.

**if you aren't one of my broken gut people, you might want to skip this entry. There is about to be plenty of straight talk about poop. You've been warned!**

For the last day and a half ago, I've felt like I needed to pass "something" from my butt. Knowing that it's normal to have mucous discharge following surgery, I wasn't too alarmed about this feeling. I did feel weird about bearing down at all to get it out, because I wasn't sure if I would somehow mess up what the good doc has built in there for me. Finally, this morning, things reached a point where no effort was really needed and the "stuff" came out. At first I felt better, but now off and on I've been having urges to go again. When I try to very carefully bear down, I get a pain in my low left abdomen. There isn't any urgency with these urges, but it is kind of uncomfortable to keep feeling like you have to poop and then you can't get anything out. I've passed a decent amount of liquidy stuff a couple of times, but the feeling remains. What's worse is my low guts feel all gurgley and gross, too. I'm uncertain as to whether or not this is just mucous and old surgical blood collecting and needing passed or if a bit of output is sneaking past the ileostomy and working it's way down there. Could easily be either or both.

I am also extremely tired which is self inflicted....too much walking around stores and stuff the last couple of days. I feel cold and kind of achey, so I took my temp and it is 99.9. I will have to watch this and make sure it doesn't get much higher. Who the he'll knows what could be going on in there. I have horrible visions of a pelvic abscess or something, but hopefully that is just my imagination getting carried away.

I've definitely felt better though, I can tell you that much. :-(

Hospital Stay, Part 2

On Saturday I got a visit from one of the stoma nurses. She switched me out from the surgery bag (which I jokingly call an oven bag because they look an awful lot like those bags you bake a turkey in!) to their regular post-op bag. When you get a loop ileostomy, there is a rod underneath the loop of intestine which helps keep it in place so the base around the stoma can heal, etc. It can be challenging to put a bag on with this rod in place. I didn't have any trouble after my first surgery, but I sure did with this one! Within a few hours, I noticed it was leaking badly when I got up to go to the bathroom. I was very upset because output was getting all over my incision, including the open wound where they had removed the drain from my abdomen. (side note: removal of that drain was one of the things I was most afraid of coming out of surgery. Turns out, it wasn't that bad. The feeling is sort if intense and it feels like they are pulling something out from way, way inside your body, but it wasn't overly painful.). My nurse was very reassuring and she cleaned the wound and incision and got another pouch on me. Less than two hours later, I tried to sit up to go to the bathroom and half the wafer just fell off my stomach. More output everywhere, including pouring into my wounds. I completely lost my cool and just started crying. They couldn't get a better seal because of the rod, but the rod couldn't come out until Sunday. It was this horrible catch 22.

I still had the same nurse and she was so good to me through all of this. We came up with a plan and she put the new pouch on with an insane amount of paste. We decided that I would call for someone to empty the ostomy bag before I tried to get out of bed to go pee. Also, she arranged it so someone would come check the pouch at least every two hours through the night. Our thinking was if we could keep weight off of the seal, maybe it would hold up better. It was a long night! It felt strange to call for help with emptying when I'd had an ostomy for so long and should have been able to do it myself. I can't say enough about the patient care staff at Cleveland Clinic though....they were all incredibly gracious and never made me feel bad about anything. We somehow made it through the night without any further leaks.

When the stoma nurse came Sunday morning, we had a whole different problem. She had a hell of a time getting all of the paste off so she could remove the rod and clean the skin around the stoma to prep for a new bag. The whole process was making me very anxious, so I called for some Valium which helped immensely. Eventually she got things to where they needed to be and there were no more leaks or issues for the rest of my stay.

One item of note from this visit: I had a much better idea of how to approach the transition to food and make it successful after my struggles following the first surgery. I started with much smaller portions and made sure I walked following each meal. Because of this, I was able to avoid any pain or nausea as I switched back to soft foods. The rest of my stay was pretty uneventful. My veins were horrible so the nightly poke for labs was a trial. I kept running low on potassium and magnesium so I was getting supplements via IV fluid. Things were otherwise pretty ho hum except for my bat shit crazy roommate! She was an older lady and I don't know if she was just an evil horrible person or had dementia or some combination of the two. She refused to take any kind if pain pills and then laid in bed moaning and complaining about being in pain. She finally insisted they bring her a new bed as she was convinced hers was bad and that was why she was in pain. She would wait until midnight and then flip on all the lights on her side of the room, start calling the nurses, and then berating them for things when they came to the room. It was crazy! She was released a day or so before me and I was never so glad to see a person go in my life!

Really, this recovery has been much easier than I expected. It helps that my incision is much smaller, but I think part of it is just that my body is already used to the ileostomy so it's been a smaller adjustment than last time. Plus I went in fit and healthy this time instead of all bedraggled from UC flares. The main problem I am having is some dissatisfaction with the new stoma. The opening is at the bottom, which isn't a huge deal. The real problem is that then opening seems to have pulled below the surface of my skin. I can't see any kind of hole anywhere on the stoma, even using a mirror to get a close look at the underside. The output comes from this crease in between the stoma and my skin, so it basically outputs right onto my skin. Keeping a pouch on has been a nightmare. I did changes on Friday that lasted 5 and 18 hours respectively. The pouch I have on right now has been on for about 27 hours, so hopefully it will keep working for a few days. Leaks suck! They make you feel helpless and kind of like you're in prison or something because it gets scary to leave the house not knowing if you'll have a problem. I plan to call Dr. L's nurse Monday to talk about this terrible stoma. I want to know why he made it this way and if there is anything to be done about it. It's kind of hard to think about because I can't decide if it's worth it to potentially go through a revision. Another surgery sounds awful, but so does three months of not being able to keep a seal on a pouch. Sigh.

Thursday, October 27, 2011


Greetings, all! I am enjoying my first full day home from the hospital today and it feels so very good to be home. What the heck is Spartacus, you ask? Well, that's what I've decided to name this new stoma. Don't really know just seems right. At any rate, I want to catch up on things and recap some stuff. I don't know how far I will get with this particular post before I get too sleepy (thanks, percocet!) but I'll see what I can do. Also, I'm typing this up on my iPad which makes it pretty well impossible to scroll back through and edit, so just bear with me if things are jumbled and misspelled and whatnot. Between the technical limitations of this device and the narcotics it could be, umm, well interesting I guess.

Ok, first up: recap the half marathon. Sorry it took me so long to write about this. I only had a few days in between the race and checking into the hospital, and I pretty much spent them soaking up as much time with my boys as possible. On race day, my training group had a conference room at a hotel near the start. We were able to meet up there as a group and hang out before the race. They also did their own gear check and walked us all over to the starting area together. It was really nice! It did mean eating my breakfast much earlier than usual. I tried to just do an empty before we walked down to the start, but as we were standing there in the corrals waiting for the start I could feel the bag filling up. It seemed like maybe 1/3 or so full and there really wasn't time to leave the corral and empty. I decided to just see how things went because I knew the output would stop once I was running, etc. It did, but I found I kept worrying about the pouch and how full it was (I couldn't really tell) and if it would leak. I was also worried that once I finished and tried to take in some post race food, it would really fill up and their might not be a bathroom handy. Rather than spend the next two hours worrying about this, I decided to stop at a port-a-potty in mile 3. I had to wait in a little line, but the emptying was no problem. I lost about four minutes though and I was really upset about being so far off pace. I foolishly tried to make the time up, ran way too hard for a few miles, and then crashed and burned around mile 11. I ended up slowing way down after that and even needing some walk breaks. In the end, I managed a 2:38 which was a 14 minute PR over my March time. Not my goal time, but I'll take it.

On Wednesday 10/19 we headed for Cleveland for my pre-op appointments. These were relatively minor compared to last time. I met briefly with Dr. Lavery and we discussed the surgery and he asked if I had questions. I did want to know how long I would need to wait for take down surgery and was a bit surprised when he said a minimum of three months. I expected something like 8-10 weeks, though that timeline created a lot of conflict for me around whether or not it was worth it to squeeze the last one in so close to the end of the year with the holidays and my husband needing to take more unpaid time off to help me. Now, we are looking at mid-January at the earliest so those decisions are made for me. It's a bit of a relief, really. I should feel good enough by Thanksgiving to enjoy everything and I definitely will by Christmas. The next season of race training starts up on 12/17 so I will start with them and just take a little break about a month in and then pick back up as I am able. I should be nicely recovered and able to do well for my spring race. I feel good about all of this. After meeting with Dr. L, I had my labs and basic physical assessment and we were good to go. Nothing to eat or drink after midnight, check in time for surgery would be 11:00 a.m. We took the baby with us, so this later start time was actually a good thing. We checked into our hotel room, had dinner at the little Lebanese restaurant across the street that I love, and settled in to rest for the evening.

The next morning I got up, showered, and got dressed. I was already hungry, but I knew there was really nothing to be done about it, so I just pushed it out of my mind. We were close enough that we decided to walk over to the surgery center. We checked in at the desk, got our pager, and sat down to wait. After a short while, we were paged to move along to the next area where I did my mandatory peeing in a cup (not pregnant, btw!) and changed into my hospital gown and sexy hair net thingie. We had a little time to hang out together before they took me back and that was nice. Then it was time to say our goodbyes and I was wheeled all through the hospital to the secret land of the OR's. It's hard to describe how weird it is back there. It's all windy hall ways and sliding doors and you see everything from the perspective of laying on your back on the gurney. Maybe it's just me, but I always get a little weirded out once we get back in that area. This time around, there hadn't been enough time to start my IV in pre-op, so they were going to do it back here. I was wheeled into a room where there was just this one lady working by herself. It was kind of odd. She tried to start an IV in the back of my hand, but the vein was all constricted with scar tissue and when she tried to push through it, it was incredibly painful. I tried to endure it, but I finally couldn't take it anymore and we had to stop. They ended up bringing the anesthesiologist (Dr B) in to help with the IV. He was a super nice guy and instantly put me at ease. He gave me a tiny shot of lidocaine and then easily placed the IV in the crook of my elbow. He said it wasn't the ideal location for long term use, but it would get the job done and they would place a better one while I was asleep.

I was wheeled back out and parked outside the door of the OR where I would have my surgery. The anesthesia team was in hand as well as a few nurses and Dr. L's physician assistant and fellow. We were just waiting for the man of the hour to arrive and then we would get started. I spent several minutes chatting with a med student who was going to sit in on the case. He had lots of questions for me about how I got diagnosed with UC, what the course of my illness was like, how I decided on surgery, etc. It was kind of nice to have the opportunity to explain it all to a future physician and I hope the things I said will help him to help other patients in the future. Next thing I knew, I could hear Dr. L and I was then being wheeled into the OR. They transferred me to the surgery table and started strapping me down. I'll be honest, I hate that part, but I know why they do it so I try not to let it bother me too much. We had what they call the "huddle" where they confirm whom I am and what we are there to do. Then patient and all surgical personnel verbally agree and then we are ready to go. The last thing I remember was Dr. B patting me and telling me to have a nice sleep and Dr. L telling me, "We're going to take good care of you." like he always does. Then I was gone.

I have some confusion about when exactly I woke up. Unlike last time, I actually remember being in the PACU (recovery). I seem to have some memory of being told "We're just finishing up" or something along those lines. I also had some nightmares Thursday night where I had flashes of someone taking an oxygen mask type thing off of my face. Based on all of this, I suspect I woke up in the OR or early in the PACU as they were removing the intubation and stuff. I really wasn't in much pain at first, but I had my pain med pump button available and I know I ended up using it pretty frequently those first couple of hours. I was extremely thirsty and felt pretty disoriented. I got transferred to my room and was soon able to get some ice chips. One of the fellows came by to tell me all had gone well. A short time later my husband came to the room and I was really happy to see him and my son. I don't have very much memory of that night except I know I had a ton of trouble sleeping. I kept having nightmares but not really knowing what they were about. I also kept waking up disoriented thinking I needed to get up and empty my ileostomy. I really didn't because it wasn't functioning yet and I had a catheter so there was no need to get up at all. I also kept having muscle spasms in my abdominal muscles that were super painful. They gave me some valium to stop the spasms and it also helped me sleep.

Ok....getting tired now....I will write some more in a new post tomorrow. I don't want to leave anything out just because I'm sleepy. :-).

Thursday, October 6, 2011

Too Little Calm, Too Much Storm....

I haven't written anything here in quite awhile and I really should be. I'm stuffed deep inside my head right now and I think there is a fear that the things I want to say will be incoherent to most of you, or something like that. Thing is, I need to say them anyway. Someone out there feels the way I do right now (or will or has) and even if they don't.....I will read back over this someday and wonder what in the heck was going on that I was so freakishly silent in the weeks leading up to this second surgery. So let's see how I do here, eh?

There is so much buzz and pressure within and around me right now that it's difficult to endure it. I feel overwhelmed, overstimulated, overextended, lots of "over" things. The other day I checked in on my four year old as he was taking a bath and I found he was doing something I always liked as a kid. He was laying on his back with the water coming up the sides of his head and covering his ears. Just his face was sticking out. He had his eyes closed and looked blissfully relaxed. I can remember doing that a lot as a kid. There was something about being immersed in the warm cocoon of water that was soothing. Most sounds melted away and all you could hear was your heart beat and breathing and maybe the random undertones of the electrical currents working through the house (or something that sounded what I imagine that would sound like). There were no demands, no deadlines, no appointments, and no responsibilities. You just floated away there until someone told you it was time to get out. How lovely.

The last month or so has been especially stressful because I've been worried about my youngest son. He is experiencing some major gross motor delays and we are working our way through trying to find out why and getting him whatever help we can to improve his mobility. We are fortunate enough to have a great early intervention program available to us and are getting free physical therapy and other services. We are already seeing progress from these things, so that is heartening. In between all of that is trying to pinpoint the source of these delays and the low muscle tone we're told our son has. We have been able to rule out a few things, much to our relief, but the investigation process continues. After walking this road once due to my older son's juvenile arthritis, this is really tough for me. It dredges up a lot of difficult memories and feelings. I know there are parents and kids out there that have it a lot worse, but I was really hoping to experience what it is like to have a healthy child. All at the same time, my boys are nothing but joy and beauty (ok, and sometimes exhaustion but it comes with the territory). I have these philosophical debates with myself where I realize (over and over again) that changing any of the bad things might also change some of the good things and there is nothing else to do but let it go. I really am trying to practice keeping my hands open on this one , but it's hard some days. I also keep thinking about the six weeks post surgery where I won't be able to lift or carry my little guy. That means no helping with his therapy and that upsets me. We already lost our nursing relationship to this stupid illness during my first hospitalization, now this.

In many ways I am less nervous about being in the hospital than I was the first time. I have a level of familiarity with the hospital, the staff, the routines and all of that and it makes it easier in many ways. In other ways, I think it's worse this time. I know now how freaked out I feel about having the staples in my stomach. I know how long the weeks will feel while I'm trying to get my strength and mobility back. I know how my body will cannibalize its own muscle tissue during the days when I can't take in enough nutrients to keep it going. I know I'm going to look and feel like hell for a long while. I know I won't be able to take care of my kids, play with them, or even hug them without being extremely careful or guarded for weeks. I also know there are lab techs who show up in the middle of the night to take your blood. I don't know why, but I've been fixated on this one for the last week or so. I've had dreams where they started coming here to the house a couple of days ahead of time to get information for my doctor and help me get used to the process. Creepy. I also know there will be a couple of days in there where I wish I could go home but I'm not quite ready. I will be off of the pain pump and able to stay awake more and I will be restless, bored, and lonely. I'm not looking forward to these parts of the process.

I know this post is a bit of a downer but, you know what, it's the truth. I owe it to all of you (and to my future self) to be as honest as I can. I feel pretty beaten down right now, but I still have my fight in me. In ten days I will run that half marathon I've been training for since May. I'm going to blow my goals right out of the water for this one, I feel it in my bones. As I tackle this second lengthy recovery, I will be working to answer the question of "what's next?" Where do I want to go and what do I want to do once my life is no longer dictated by illness? Sometimes I get scared thinking "something" could go wrong. Then I buck up and refuse to listen to that voice of doubt.

There is a movie I love called "True Romance", written by Quinten Tarantino. If you know his work at all, you know that nobody does gritty violence like he's almost too much for me sometimes but the overall quality of his work makes up for it. There is a particular scene in this movie where James Gandolfini is trying to shake down Patricia Arquette's character for some information he wants. He is this huge, menacing, thug of a guy and she is just tiny. The scene escalates into a violent confrontation as he tries to coerce the information out of her, but she won't talk. There is one moment in this horribly violent scene where she is all beaten up and bloody faced and she looks up at him and just flips him the bird. Oddly enough, that has been resonating with me a lot lately. I am beaten up pretty badly right now, but I still have a lot of fight left. Bring it on.