Is This Thing On?

Huh, I still have a blog here. One would assume I'd forgotten all about it and, in a way, one would be correct in that assumption. What the heck have I been doing? Life, my friends. Life. So what brings me back here to the blogosphere?

I got an email.

Yep, I got a very nice email from a person who read the blog and wanted to ask me some questions. I was pretty excited to get that email because I've always invited people to reach out if they felt inclined and it's been awhile since anyone took me up on the offer.

It also reminded me of why I started this blog in the first place! Sure, it's kind of neat for me to be able to go back through and have a record of my journey. The real purpose was always to share as much as I could about my experience with other people. I wanted IBD people to know they weren't alone out there. I wanted people to know they could have an ostomy or a j-pouch and still do things like distance running. I wanted to share information and, if I was lucky, spread a little hope.

I honestly didn't think anyone was still reading or getting anything out of my ramblings anymore. Then I got an email. In my typical fashion, I crafted a rather long-winded response which I'd like to share here. Names are withheld to protect the innocent and all that but, I feel like this is a nice synopsis of where I am right now.

Nice email writer,

Ok. Finally settling in for the evening and have a few moments to write a more complete response. Sit back and get comfy....I am wordy!

First, thank you for writing to me! It was a good reminder that I need to update the blog because people do actually still read it and get benefit from it. I will be sure to do that....hopefully tomorrow.

The question of whether to go forward with the j-pouch is such a tricky one. Every situation is so different and I really think the only person who can decide is the person who has to wake up and live it every day. That would be you. :-) What I can do is share my experience and give that to you as one more piece of the puzzle to ponder.

I am honestly doing really well. It took time, and some rocky moments, to get here but here I am. Since my take down in January 2012 I've run three half marathons. I keep up with two very active little boys (oh the driving involved!) and I'm a full time student.

I really don't think about my j-pouch much at all. I have to pay extra attention to keeping hydrated but, I had that with the ileo too. I eat what I want, though I do try not to eat too large a quantity of veggies in one sitting as it seems to cause some cramps sometimes. I'm a vegetarian though, so I still take in plenty of fruits and veggies, beans, etc with no problems. I am lucky enough to not need any meds (Immodium, Metamucil, etc) or skin creams. We got a bidet toilet seat early on and it has been worth every penny. I would say I make 6-8 bathroom trips over 24 hours but, never in an urgent have to hurry way. I'm now able to sleep 6-7 hours without needing to get up unless I've had a lot to eat late in the evening (then it's more like 4-5 hours). I was running with my husband on Monday and told him this is the healthiest I've been in seven years. :-)

I won't sugar coat things. The process was rough. Surgery 1 was ok, especially once the ostomy learning curve leveled off. Surgery 2 is really tough. The recovery can be long and it takes a lot out of you. Take down surgery itself is physically easier but, there are lots of things that can mess with your head along the way. When the new pouch is going through its growing pains, it is frighteningly like UC with the time on the toilet and dreadfully waiting for something to go wrong.

So, that's my story. I have no regrets. People like to add "except I wish I'd done it sooner" to that statement but I've moved away from that. The process was basically a walk through hell. I think I had to get as sick as I did in order to endure the whole thing. That may not be true for everyone but, that's how I feel about it.

I guess my advice would be to take your time and search inside yourself to see what feels right for you. Do you feel like it is worth the potential risks to change away from the ileo? That is really all you are changing. I wouldn't call having the ileo bad but, I have to admit I was glad when that phase of my process was over. It was the right thing for me but, that doesn't make it right for everyone.

It could be that this wasn't helpful at all, LOL. I just hesitate to ever tell anyone what they should do in these situations. There are so many factors that make each of our cases unique. In the end, you have to wake up and live your decision every day so it has to be the thing that feels most right to you.

Feel free to write again if you like. I'm happy to answer any other questions. I figure if I had to go through all of this, at least I can have helping other people as a positive outcome. If you're comfortable sharing, I would like to know what you end up deciding to do.


There it is. How I am doing a bit over one year after take down. I would also like to add that I am waiting with fingers crossed for my notice of acceptance to nursing school. I've been working my butt off (haha!) with lots of awesome but tough science classes and stuff so, hopefully it's all ready to pay off. My other bit of news is that I am running in a team relay event here in three weeks. It's this 24 hour thing with six runners covering something like 120 miles. I have 17 miles broken up over three sections. I'm pretty pumped about it. I am also kicking off an attempt at training for my first ever full marathon. Keep your fingers crossed for me that I'm tough enough to hang with it and finish my goal race in October.

Big thanks to those of you still checking in and those who are new and finding me for the first time. It does mean a lot to feel like I can do something to help people through the crappy situation we are stuck in. (Witty pun, woot! Ok, not really).

Let's Catch Up!

Wow, a lot has happened since I last posted here. Bad blogger, bad! Ok....to get us all back on the same page:

I did see the hematologist and they set me up with an iron transfusion. This is what I wrote about it on a support board:

I got the inFed infusion where you get one large dose of iron. There is another type where you have to make multiple visits getting smaller doses each time. Friday morning I arrived at the infusion center at 8:00 am. They were very busy with folks there to get chemo, blood, etc so I had a bit of a wait before we could get started.

Finally, around 9:00, they started my IV and hung a small bag of saline to flush things and give my pre-meds. I got a small dose of Benadryl and one other thing I can't remember to help prevent reaction. Then I got my test dose of the iron solution. This is a mini bag which they run to see if you will have a reaction to the iron solution before giving the full dose. All I felt during this time was a slight fuzzy headed feeling from the Benadryl. Once 30 minutes had passed, they started the full dose of the iron solution. I was walking out the door by 3:00 pm.

The only issue I had was being cold (which always happens to me with IV) and getting hungry (I brought a small snack but really needed a lunch). My nurses got me a warmed blanket and some Boost and I was fine. I mostly spent the time watching Netflix on my iPad. By the next day I felt what I considered a marked increase in energy. That feeling lasted throughout the weekend and I did some good running. Today I am feeling sort of tired again, but it could be delayed effects from the infusion which they warned me about. Should go away in a day or so.

This was back on July 27'ish. Another entry for the Things They Don't Tell You file:

I felt crazy good the evening I got the infusion. It was almost freakish how energetic I felt. I got up the next morning and ran seven miles with my training friends. That Monday I ran four more. Then I hit a wall! I actually felt worse than before I went in for the treatment. I was really depressed thinking it hadn't worked and something was majorly wrong. About four weeks after the infusion I had my follow up appointment. I was feeling a bit better. My labs came back normal and I was really relieved! I told the nurse practitioner about my high and crash and she said, "Oh yeah, that was probably the steroid we give you to avoid a reaction. That happens pretty often." Would have been nice to know about this so I would have known what I experienced was normal. Oh well, now I get to tell all of you so that you will know if you are ever in this situation!

Fast forward to now....I am on a schedule of monthly labs. In fact, I get my first recheck next week. I have a three month follow up with hematology. If everything still looks good then we will stretch the lab draws and follow ups out until I can eventually quit going if things stay stable. Hopefully this anemia mess was just a result of the cumulative effects of the surgeries and my infusion experience will be a one and done type of thing.

So how am I doing now? I couldn't be better! I've had my active j-pouch for about eight months and have never had any significant issues. I experience the typical 6-8 movements per day and can sleep 6-7 hours uninterrupted. I am taking classes full time and have no trouble sitting in lecture for a couple of hours at a time (well, except for some boredom once in awhile!). I am very busy with my boys and their activities and I love being able to spend an hour or more on the soccer sideline without once worrying about having to duck into the port-a-potty. What might be the best part though.....I am doing some of my best running ever! This training season started out pretty rough fighting the anemia but, now that my counts are back where they should be, I'm training well and doing some of the best racing I've ever done.

So, yes, when people ask me if I am happy with my choice I tell them I absolutely am.

Time to Get Real!

Here's an interesting development: all of my tests are normal. My hemoglobin and iron store numbers are now back on the bottom rungs of the "normal" ladder. No celiac disease/gluten insensitivity. Normal liver panel, blood counts, thyroid function, and clotting factors. My B 12 levels are great. Huh.

Our operating theory at this point is that I feel like crap because:

1) I had three surgeries and four hospital stays from March 2011-January 2012. Along the way I also gave up my colon, so there's that.

2) Recovery from my surgeries meant a restricted, and often nutritionally lacking, diet. Think almost no veggies, very little fruit, low fiber, lots of soft "white" easy to digest foods. I'm just now able to eat more normally.

3) I do not get consistent sleep. This has been a problem for years. Time to fix that.

4) I need to adjust my own expectations and additude.

I really, really, really need to clean up and rethink my diet. I eat way too many "junk" carbs meaning processed stuff like cereal, crackers, and bread. I eat way too much processed stuff, period. My habits around eating fruits and vegetables are seriously deteriorated. I don't get enough quality protein. I have to change these things. I will. I know how and what to do, it's time to do it.

I need to be nicer to my body and less demanding upon it. Aside from better fuel, I need to give my body adequate rest. I need to hydrate consistently. I need to quit being disappointed and discouraged that a body that was dragged through hell last year doesn't seem quite ready to train for a marathon. Yes, I ran other races along the way...but that was mostly prior to that whole November to January window where everything pretty much sucked from a physical stand point. I somehow managed to get it together enough to drag myself down to Georgia for that race, but I shouldn't have. I knew it, too...but you would have never got me to admit it at the time. It's ok, that is in the past and I don't regret it one bit. I needed that one mentally even if it wasn't smart physically. Now though, I need to cut myself some slack.

I am not running the Columbus Marathon in October. There, I said it. First time I have acknowledged that to anyone else. I have a lot of mixed feelings but, I'll tell you one thing....I dropped my training schedule on the MIT website back to the half, looked at the new numbers, and felt relief. It is the right thing to do. It doesn't mean never, it just means not right now. The marathon isn't going anywhere and neither is my training group. There will be time and opportunities when I am ready.

So that's where we are. I will see a hematologist next Friday to see if we should do some IV or injected iron to get my levels back up more quickly. They have improved, but it is taking a very long time. We will see what they say. For now, I will be working on the stuff mentioned above and hopefully moving back into a place of normalcy. Sometimes I think I've been sick for so long that I'm not sure how to be a "well person" anymore. It is time to relearn.

That Is Good News, Right?

Sorry for the delay in updating about the scopes. I did have my upper and lower endoscopies done. This was after much drama and interrogation of every single medical person who came within my line of vision after they handed me a consent form for a colonoscopy! I asked the nurse, "Did they tell him I don't have a colon?" (this was a GI I've never seen) She assured me he knew but this was the most appropriate paper they had for me to sign. I waffled a moment before adding a note about my lack of colon above the signature area and then I signed. Another nurse came to start my IV and she got quizzed, "Does the doctor know I don't have a colon? He can't stick a regular colonoscopy scope on there!" She attempted to reassure me, but I was sort of freaking out. Finally, the nurse who would be with me in the procedure room came and got the same third degree. She promised me he knew and already had the instruments he needed ready to go. She finally set me at ease when she promised me she wouldn't give me any sedative or drugs until I got a chance to ask him myself. So I did and he assured me he knew and it would be fine and I then took my Demerol and Versyd nap like a good patient.

Everything was good on the scopes. I have a very minor hiatal hernia, but nothing to be concerned about and certainly not the cause of my issues. I am still waiting to hear about a biopsy they took for celiac disease, but he said he didn't see any visual indication of damage that they often see with that. All good news, right? Well, yes and no.

I am still in bad shape. I managed to run a couple of times a week or so ago. Nothing crazy...four miles Thursday before last, three on Saturday, then three again that Monday. Nice and easy paces, shouldn't have been a problem. By the time I got out of class around noon on Tuesday I was so tired I felt disoriented and couldn't find my car for a good while. I managed to get myself home where I plopped down in a recliner and promptly went to sleep. I slept all afternoon until my husband got home from work with the kids. That evening I knew the fatigue was back and I was really upset to be right back to square one again. Then things got even more weird.

I started noticing this weird discoloration to my skin. A couple of spots on one leg, then popping up all over my arms. It is hard to describe. I hesitate to call it a rash, because there wasn't anything bumpy or itchy. It was more like white spots or splotches. My skin just had these defined areas that were significantly paler than the rest of me, which is saying something! Over a day they multiplied and was finding at least a few everywhere, but tons on my arms. Then, it started going away and I was relieved. Except, the white splotchy things were replaced with these flat, red, pin point dots. It looks like someone has been sneaking up on me when I'm not looking and dotting me with a red felt tip pin. I got my Dr. Google on and it seems the most likely scenario is something called petechia. Basically, bleeding into the skin. So far mine is minor compared to the pictures on the interwebz, but it is there and making steady advancement over the past couple of days. I also have this bruised looking stuff going on with my fingers that decided to show up yesterday. Possibilities range from some weird virus to serious shit that will kill you. I felt so weird about going back to the doctor when I have a hematology appointment, but it is a month away. I've been seriously anemic for at least five months now plus this new stuff with the red dots, bruised looking fingers, insane exhaustion, and over the last day or so confusion and difficulty concentrating. You don't even want to know how long it is taking me to write this! *sigh* I'm going to call my primary doctor in the morning. I think, at a minimum, we need to see some labs and make sure my platelets and/or red blood cells aren't in some danger zone. I need to know it is safe to wait until my hematology appointment. Honestly though, July 24 is so far away and I am so deeply tired I don't know how I will get there.

The most insane part of the whole thing is how I've been trying to ignore this and carry on. I think I got so used to soldiering on and not letting on as to how sick I was with UC that I've been trying to handle this in the same way. That obviously is not a viable option.

Meanwhile....

I realized I really need to do an update to bring things up to speed or else here in a week or so I'm going to be talking about things that don't make sense without a bit of back story. So, here we go.

Coming out of my half marathon three weeks or so ago, I was extremely tired. I actually crawled into bed before having a post-race meal which isn't like me at all. Don't worry, I didn't lay there for long before my body demanded food so I did end up eating and then falling asleep right away. I got seven or so hours of sleep that night, but the next day I slept for almost the entire eight hour drive home and was still ready for an early bedtime. On Monday I sat in my classes barely able to absorb what my teachers were saying. I really thought all of this was just post-race fatigue, but I couldn't remember ever feeling so poorly after any race before. I was also getting the head rushes upon standing up and getting completely winded going up a couple of flights of stairs. I'd just run 13 tough miles, none of it made sense.

I got in to see my PCP on Tuesday that week. She wanted new labs and they confirmed what we both already expected, the anemia was back. This time my hemoglobin was down to 10 and my ferretin had fallen all the way down to seven. My total red blood cell count was just hovering at the low end of normal but was now lower than previously. I was without iron stores and terribly low on the essential protein that transports oxygen to the body's cells. None of this is good.

I don't really know what happened. My numbers weren't great when I started my running back up, but they weren't this terrible either. All I can figure is whatever is causing me to lose more blood than my body can replace was aggravated by the strain of running the race. I'm getting an upper and lower GI scope on Thursday to try to figure out what is going on. Evidently, when you have major iron deficiency anemia the GI tract is a common culprit so this is one of the first things they want to rule out. The possibilities run the gamut from a bleed at the join of the j-pouch, to celiac disease (causes iron malabsorption), to ulcers, to some new manifestation of IBD. There is also the potential that they will get in there and find a big ol gastric cancer tumor, but I refuse to entertain that possibility right now. It is also possible that they won't find anything at all and this will remain a mystery. In that case, I believe my next stop is the OB-Gyn to rule out bleeding fibroids or endometriosis or some other mystery ailment of the lady bits variety. I don't think it will be something like that, but you never know. If we are still baffled at that point and my numbers are still so terrible, then I think the next step is a hematologist.

It's all very frustrating. On the one hand, I hope to have an answer after Thursday. On the other, I'm afraid of what the answer might be. I have a gnawing fear that they will come back and tell me I actually have Crohn's and, oops, now it's in my stomach or small intestine and I'll end up having to take the very drugs I went through all of this surgery to avoid. I don't know. I'm also worried because anything that requires surgery or a hospital stay is going to mean dropping my classes for summer and delaying my progress toward my nursing degree. I just want to have my life and do normal things. That's where I'm supposed to be right now and it's all so far out of reach.

I Ran My Race!

And I survived! :-) This is a report I put together for a running website I frequent, so excuse the references to obscure people you've never heard of and all of that. I am so pumped up to have actually done this and done it well. A definite "Yes!" answer to the question, "Can I still lead an active life after j-pouch surgery?"

To begin at the beginning....I ran TA for the first time in 2009.  It was a 5:07 suffer-fest, but even I sat at the finish all sore and defeated I was already thinking about coming back again and doing it better.  In 2010 I was busy growing a human, so it was decided that 2011 would be the year.  As I started the training cycle that year, the ulcerative colitis I'd been battling for four years really decided to start playing mean.  I was sicker and sicker all the time and on higher and higher doses of Prednisone that we're doing nothing to help me.  Finally, in March, a surgeon at Cleveland Clinic told me I wouldn't make it to May in any condition to run a race, so I gave in and scheduled my colectomy. 

From March to October, I adjusted to life with an ileostomy and got back into training and ran an awesome half at Columbus with a 20 minute PR.  It was amazing and I couldn't believe how strong I was now that I wasn't sick all of the time.  A few days later, I went in for surgery #2 which was a bunch of crazy reconstruction stuff so that they could eventually hook my innards back up and get rid of the ileostomy.  This recovery was really difficult with complications and I came into the new year extremely weak but committed  to starting training.  In January I had my third and final surgery.  I was now all back in one piece and felt ready to get to work.  After about four weeks of recovery, I started training only to find I was incredibly exhausted after each workout.  I would eventually find out that my illness at the end of the year had left me extremely anemic and deficient in some key vitamins and things.  I was ordered to take an extra month off from running which was mentally very difficult for me to do after waiting so long to get started.  I managed to listen to my doctor though and finally got to start training in earnest in the latter part of March.  I squeezed in as much as I could without overdoing things and managed to work in one 11 and 12 mile run toward the end.  My fitness came back pretty well, all things considered, and I felt pretty confident heading down to Georgia. 

The trip down was mostly uneventful and I was so happy to meet up with folks at the pasta dinner since I missed that the first time.  We took the newbie with us and THG pretty much adopted him on the spot and spent a good part of the dinner walking around with him on her hip.  Jasz, OT, wsd, and Cookie Monster were all there and it was good to see them again.  Brney was there, too and it was my first time meeting her.  She couldn't have been nicer or more adorable and the newbie was instantly smitten with her. 

I woke up Saturday morning and just wanted to puke because I felt so nervous. I was afraid I would get lost.  Really afraid.  I also had no idea if I would be able to keep up with my hydration and electrolyte needs now that I didn't have my colon.  I hadn't really been tested in these kind of conditions yet.  I figured there was only one way to find out and I would either finish and it would be awesome or I would be carted off by medics and it would suck.  Down to the lake and a good bit of time milling about and waiting for the start.  We got our pre-race instructions and off we went.  I almost instantly realized my shoes were way too loosely tied and my feet were sliding around like crazy just with the camber of that initial grassy area around the lake.  I figured I had better fix that now or I would be really sorry in an hour or so.  The same thought process cropped up when I saw some port-a-potties at the start of the campgrounds.  Once all that was taken care of, everyone was gone and I was alone.  I would basically run alone for the rest of the race, and I knew it. 

As I got to the trail portion, there was instant up and I switched to a walk.  Then, it seemed like everyone in the race came spilling down the hill toward me.  Lots of encouragement, including a high five from Brney, but it was all just another reminder of how damn far behind I was already.  I knew this was going to be largely about me and my own head and prepared my mindset for the rest of the journey.  I started thinking then about Relentless Forward Progress, a book about trail running that I've yet to read but I love the title.  I just kept telling myself that whether it was a run, scramble, or walk I just needed Relentless Forward Progress and to keep moving and make it happen.  A lot of this loop was kind of jumbled together in my mind, but I definitely remember the fire break.  It really is where giant bulldozer type things roll through and carve out a path.  It was not created with runners in mind whatsoever.  The ground was crazy tilty all over, rocks were abundant, and oh my god some silly steep hills!  At one point I kept thinking this is what it would be like if Becky's Bluff and a bulldozer somehow had a baby.  I keep hearing rumors that this section was only a mile, but I don't believe it one bit.  There was also some really nice trail in these sections and I found a lot of the first loop to be really fun.  Even the firebreak was fun except I knew the bluff was still to come. 

At the halfway stop, I ran into txredd and she really pepped me up a lot and helped me get geared up for the second loop.  I was struggling with feeling low fueled and also starting to have some calf spasms.  I took my time at this stop making sure I got a full gel in and more salt stick with some extra water.  Then I was off for the red loop which meant it would soon be time for the bluff. I had to laugh reading Bama's report about comparing the "memory" of the bluff to what happens to moms after childbirth.  I told my husband that exact same thing on our drive home! I was in the hills leading up to the bluff and somehow I had totally forgotten that this wasn't actually it.  As I was thinking I was almost done and it wasn't as bad as I remembered, I saw the dreaded sign and realized I hadn't even started yet.  I wanted to cry! I kept reminding myself about the Relentless Forward Progress and started the climb.  I did have to stop briefly at some points, but just long enough to take a couple of breaths and get moving again.  It really was easier to keep moving than to try to keep from sliding/rolling back down the damn hill.  Right around the time where I really just wanted to die, I caught a glimpse of wsd and knew I was at the top! Yes! I was so happy to see him!  We shared a hug and he took a great picture for me and I was on my way.

The remainder of the course is a good bit of downhill which should be an awesome thing.  However, my right knee decided this would be a good time to start feeling like someone was shoving a flaming hot ice pick under my kneecap   with every.freaking.step.  The pain took my breath away at points, but I had to keep moving since I lack the powers of teleportation.  A nice volunteer stopped me to ask me if I was ok and if I needed to drop.  Oh god was I tempted, but I have yet to DNF and I couldn't emotionally handle the idea of not finishing.  I decided I was going forward until/unless I couldn't anymore and off I went.  I lost a lot of time here and there was a point where I knew I wasn't going to make my time goal and that really brought my mood down.  I also started beating myself up over how I had to be crazy to think I was going to train for a full when I couldn't even run this half without blowing up.  There was a window of time in here where I kind of got delirious and everything looked really bright and weird.  I don't know how to explain it really, because I wasn't dizzy or anything, I just was in a weird place mentally.  I found myself thinking a lot about my training group at home during this time, and I knew I had to finish no matter how bad I might be hurting right now.  I finally kind of snapped out of it and remembered how hard I had to fight to even start this race and that these were crazy conditions that had nothing at all to do with what my marathon training would be like.  I ran along the flats and small uphills, and winced my way down the downhills.  I finally popped out of the woods and realized I was almost there!

Coming down the road, I could see the bridge and then I could see my husband and the newbie standing there waving at me.  I got choked up there, but had to push that feeling down and keep going.  Onto the bridge, quick hi to my guys, and then on to the finish.  I can't even explain the feelings that swept over me.  I was euphoric to have conquered this whole process.  I survived, I did it, I am still strong enough to do the kinds of races and things I want to do despite all I've been through.  I really can do anything and in that moment I knew it as sure as I've ever known any single fact.  I got a hug from Brney and ended up crying all over her, but she was sweet about it.  Before long, I was up in the cabin having downed some ibuprofen, taken an ice bath, and passed out in bed.  The little rest did me good and I was ready to go for the remainder of the evening's activities. 

I'm waiting for the official times to post, but I believe I have a 47 minute PR, maybe 45.  Amazing! To me, this course was tougher than the traditional one so I am really proud of what I was able to do.  I had 4:20 for a watch time and, though I missed my goal to come in under four hours, I know that was the very best effort I could put in on that day in those conditions so I am satisfied.  I am also really happy that my body stood up to conditions as far as hydrating, electrolytes, etc.  I had some calf cramping, but not enough to stop me and lots of other folks had the same so I feel ok about it.  I feel much more confident going into my training cycle for the full knowing I've endured this tough race and held up pretty well. 

It's been awhile....

I know I'm really overdue for an update, but it's kind of complicated. For awhile, I didn't really want to think about my recovery anymore. I just needed some time that wasn't about that aspect of my life. It was kind of hard to get though since my recovery was still driving everything I did and how I did it. I attempted to pick back up with my running about a month after my takedown surgery. Initially I was just thrilled to be doing it. Then, I noticed I was really battling some heavy fatigue. Things got a little worse and I found I couldn't stand up without getting amazingly light headed and feeling like I might blackout. I went to see my family doc and we figured out that I was super anemic and also majorly deficient in Vitamin D. She ordered an additional month of rest, supplementation, and then a recheck. It was difficult to take that extra time off, but I did rediscover Pilates during that time which was a plus. Fortunately, when I went back for my recheck my numbers were back in the normal range and I got the green light to resume my running. I am happy to report I completed a twelve mile training run yesterday and I will be running a half marathon on May 12th. I'm feeling a bit emotional about the race because it's the one I was supposed to do last spring but had to let go so that I could get my colectomy. It feels good to be going back! My pace still isn't back where I would like it to be, but considering how weak and sick I was as recently as November, I'm thrilled to be right here where I am right now. I'm also really happy that the j-pouch has been so compatible with running. I haven't had any trouble at all once I figured out I need to eat at least an hour before my run. The sports drinks and gels that I take don't cause any issues at all which was something I was worried about when I started back up.

I'm also a third of the way through my first quarter back at school! I am in nursing school now and it has me pretty busy but I love it. I'm currently taking an algebra class, chemistry, and anatomy/physiology so it's a challenge, but in a good way. It feels good to be finally doing something again after all of that downtime. Everything I'm learning is so interesting and I'm looking forward to getting into the profession and helping patients in the future.

Writing has also been tricky because I kind of felt like I didn't have anything to say since my surgery process is over. I finally remembered though how much I combed the Internet looking for stories of what people's lives were like after the j-pouch process and decided there are still things I can contribute. I'm still doing really well. I don't currently use any Imodium or fiber therapy. I'm in the neighborhood of six to eight bathroom visits per day depending on what and how much I eat. I'm easily able to sleep six or so hours at night without interruption, sometimes more. This is all better than I expected way sooner than I expected! We did get the bidet seat for our toilet and I can't recommend that highly enough for people with a j-pouch. I don't have any issues at all with irritation and no longer use any kind of pastes, etc. I do carry flushable wipes in my purse for when I'm out and about and that seems to work great. I know people are always curious about dietary things as well. I'm back on a vegetarian/semi-vegan diet now and am able to just about anything I want. I was surprised to discover that's seem to be lactose intolerant now. I guess it's not that uncommon with small bowel surgery, but I didn't know that until recently. With that being the case, I've opted to go ahead and cut out dairy and eggs as well. I do flex back a bit when eating a restaurant (if there is butter in a dish, etc) but am trying to mostly avoid animal products all together at this point. I'm able to eat tofu, beans, all kinds of steamed veggies, salad, fresh fruit---pretty much everything. I haven't tried some of the biggies like popcorn just yet, but I will at some point. I have had a little bit of nuts in foods (like Luna bars, etc) and that has been fine. I know people also worry about alcohol, but I haven't noticed any issues there. I don't drink much or often these days, but I've had a beer or glass of wine here and there without consequence. Overall, I'm extremely happy with the function of my pouch and would definitely make the decision for surgery again if I had to to.

I know I keep using the word amazed....

Seriously thought, that's what I am. Amazed. I continue to be completely amazed by how well my new "plumbing" is working. I never expected it to be this good this early on! If you are a person with healthy guts, this will probably sound awful to you, but if you are a j-poucher...or even just an IBD sufferer, then you'll understand where I am coming from.

I am seven days out from reversal surgery. I am averaging six to seven trips to the bathroom per day right now. I took an Imodium before breakfast this morning and was able to go from 9:00 a.m. to 3:00 p.m. without needing to go at all. I sleep all night without interruption. I have no leakage, accidents, pain, bleeding, or urgency. It's wonderful!

The only issue I've had is a little bit of irritation, or what we j-pouch kids like to call butt burn. I think I've pretty much resolved that thanks to some tweaks to my routine and remembering that I still had my little squeeze wash bottle they give you when you have a baby. For those interested in such details here is what I do: go as needed, squirt a little water to rinse off the excess, use a Cottonelle wipe to get things clean, squirt a little water to rinse off the stuff from the wipe, pat dry with TP, then apply my protective paste I got from CC. It sounds like a lot, but it isn't that bad and it has helped so much that it is worth the steps. We are looking at ordering a bidet seat for the toilet though. That would cut out the steps with the wipe and all that because the water would be enough to clean things up. So it would just be go, clean with bidet, pat dry, paste as needed. Sounds good to me!

The view from the other side....

Greetings, friends! I should have been writing during this time, but I just couldn't do it. I was really struggling with some emotions and things and in order to write about them I would have had to think about them and sort them out and I just wasn't there. I finally quit trying to carry emotional weight of this process all on my own and got myself back on an antidepressant. I was taking one going into my first surgery, but quit when I started finding the pills coming out in my ostomy bag. It turns out there is a different version of my medication that isn't time release coated and it is working quite well. My OBGYN wrote the prescription for me and told me she was surprised my surgeon didn't put me on something because a huge percentage of our serotonin is produced in the gut and it isn't uncommon to see depression in people who have surgery or illness of the digestive system. This blew my mind! I've never once heard of this in all the time I've been reading IBD stuff. I did some poking around on the Internet and it seems to be true. Amazing. I can't help but wonder if the depression issues I've battled since my teens are connected to my poorly functioning guts. They've really never been right, even before I came down with UC. At any rate, the medication has been a huge help and I am feeling more like myself again.

I feel like I can finally say it: the second phase of the surgery process was pretty much my own personal hell. The surgery itself went pretty well and was much less painful than part one. I think it was a combination of the illness from the abscess and the problems with my horrible loop ileostomy. I spent a good part of November, December, and January wondering what the hell I had gotten myself into and worrying I had made a huge mistake. It is an awful feeling because it isn't like you can go back. All I could do was hang on, count the days until reversal, and hope it would be better on the other side.

My imaging test went well. It wasn't as bad as I tought it might be, just slightly uncomfortable. I had a change of clothes and stuff to change my appliance with me, but I didn't end up needing any of it. The whole thing took about twenty minutes and I had one trip to the bathroom about an hour later to pass the contrast and that was it. One thing I will say about the test: if the scheduler attempts to give you a prep procedure Do Not follow it unless you check with someone from your surgeon's office. Most people with an ostomy will not need any kind of prep at all for this test. I actually ate a small meal about a half an hour before mine. If you do need a prep, it will be different from the one they give to someone with a colon. Trying to follow the standard prep will make you very sick and possibly land you in the hospital. So be careful and make sure you clear any instructions through your surgeon's office.

I ended up getting scheduled for pre-op on January 23rd with surgery on January 24th. I was more than ready to move forward and begin the next chapter of my life. Then I got a phone call on the afternoon of Friday the 20th. They wanted me to reschedule. My surgeon had some sort of family emergency and they had no idea when he might be back or how long I would have to wait. It didn't feel real. I had been so afraid that something would happen to delay things and now here it was. I was angry, sad, and devastated all at once. I wanted to scream and curse and break things. Fortunately I was in the car with my husband and kids which required me to keep myself together. I thought about the situation a bit and realized this was actually a very simple part of the surgery. I'm sure a resident could probably do it if needed. I called back and explained how upset I was and asked if there was anything that could be done. They asked me if I was comfortable with the idea of another surgeon and then placed me on hold for a few minutes. I then learned that Dr. Kiran had agreed to perform my reversal surgery. I could even keep my original date and everything. Oh, was I relieved. It seemed kind of crazy to meet the man on Monday and have him operate on me on Tuesday, but that is when I realized how grateful I was that I had decided on the Cleveland Clnic for this process. The entire colorectal surgery department there is among the best in the country. There was no need to worry.

Pre-op day went off without a hitch. I found Dr. Kiran to be very pleasant and he answered my few remaining questions. He would be doing the closure the same way Dr. Lavery had described. I had my labs drawn and then we spent the remainder of the day lounging in our hotel room and watching silly television shows. I had to spend the day on a clear liquid diet which made me a little grumpy, but I managed. My surgery check in time was 8:30 which let us sleep until a decent hour but I didn't have to sit around hungry for half the day. The pre-op area was running ahead of schedule and got me all set up pretty quickly. I did have to wait in a sort of staging area back near the OR's for awhile while they finished the procedure ahead of mine and got the OR cleaned up and ready to go again. I mostly napped during this time and felt very relaxed. When they took me into the OR I could feel my heart beating a little faster, but I didn't feel as nervous as I had for my previous surgeries. I knew this one was expected to be simple. They moved me to the operating table and we were all making jokes and laughing. They gave me something to help me relax and that is the last thing I remember. I usually am still awake when the doctor comes in and they give the actual anesthesia, but I guess I was pretty tired and just fell asleep before all of that.

For the first time, I woke up as they were finishing pulling the breathing tube from my throat. It wasn't painful or scary, just weird. I was awake going into the recovery area which was also a first. Normally I don't remember anything until I'm in my hospital room, but I was really alert. My nurse was surprised I was so awake and talking and asking questions. I wanted to see my stomach right away. It was so odd just seeing a bandage there.....but the bag was really gone! I had done it! They gave me an injection on my right side to block the pain from the incision and told me it would last 12-16 hours. I also had my pain medication button which I could press every six minutes. I was feeling really good! I couldn't believe how good. They let my husband come back to hang out with me while we waited to be moved to my room. It didn't take too long and then I was transported over to H50/51.

I don't know if I've said it before, but even if I have it is worth saying again. The recovery floor for colorectal patients at the Cleveland Clinic is amazing. All of the patients are there for similar reasons and all of the staff is knowlegable about ostomies and how to care for colorectal surgery patients. It takes a special kind of caregiver to come and empty your ostomy in the middle of the night and maintain a smile and compassionate attitude while they do it. I love the people who work on that floor and I could not have made it through this process as easily as I did without their excellent care. It was funny, while I was there I was constantly running into people who had cared for me on my prior visits and they would congratulate me and hug me and tell me they were proud of me for making it through all of this. Not your ordinary hospital experience.

Tuesday night that pain blocking injection had me feeling so good that I made two separate walks out around the unit trying to help my guts wake up. I was approved for clear liquids right away, but I decided to stay on just ice chips that night and go to the extra stuff in the morning. You do not want to put stuff in there before the body is ready! I made that mistake the first time and I did not want to go through that again. When the pain block injection wore off, I did have some serious soreness on my right side, but it was different than my previous surgeries. It was more of a muscle ache....I described it as feeling like I'd done all the sit ups in the world and man did it feel that way. The pain pump kept things under control as long as I remembered to push the button on a regular basis. I slept horribly the first night! My roommate was very sick and was up most of the night in pain so there was a lot of activity in our room. I later learned she had been in there since December. She has Crohn's and they found cancer during a bowel resection surgery. She was really having a difficult time and I felt really bad for her.

Wednesday was clear liquids and lots of walking. At some point in the afternoon I finally pooped and it was kind of hilarious because the nurse and aide were very excited about it and congratulating me. It seemed silly, but it really wasn't after all I went through to get to that point. I had a lot of pain in my stomach from gas and the stool I was passing was all liquid, so it was all a little traumatic for me. It kind of took me back to that feeling of having UC, but I soon realized that I could control things and didn't have to rush to the bathroom and that helped me feel better. I wasn't allowed to move past the clear liquids until I started passing gas because that meant things were moving via peristalsis versus just gravity. That didn't happen until Thursday afternoon. In the meantime, I spent Thursday day shift mostly in the bathroom and passed 2,500 ml of liquid stool. Everyone got really anxious about this and I was feeling completely exhausted and a little scared. Would it always be like this? I was afraid I had made an awful mistake and was very upset. They doubled up my IV fluid and supplemented with a bunch of IV electrolytes to replace what I'd lost. In a few hours I felt better, then the gas finally came and, thank goodness, I got some real food to eat! That helped a lot and for the evening shift I was down to 1,300 ml of output. Still too high, but improvement none the less. We kept the IV replacement routine going and things were better overnight. I slept for six hours and felt so much better when I woke up Friday morning.

Friday was pretty uneventful. My output had slowed way down and they were optimistic that I would go home Saturday. I just kept eating and walking and hoping for the best. I did start using this protective paste they gave me because my butt was getting a bit sore from all of the liqui-poo I had going on. This is some kind of stuff they make there in the pharmacy and it is really good. It has zinc oxide, cornstarch, and some other stuff in it that I can't remember. I kept putting it on every time I went to the bathroom and it helped a ton. Saturday morning the doctor's rounded and confirmed I would be discharged! I was so excited to go home. My husband came to pick me up and the ride home wasn't bad at all. Much less painful than the previous post-surgery rides. We even stopped at an Arby's and I ate some curly fries. They were so good after all of that hospital food! That evening we had dinner at my mother-in-laws house and picked up the kids from her. She once again stepped up to watch them for us during my surgery and again so Chris could come pick me up. So grateful to her!

I am pretty amazed at how much my bowels have slowed down in just a few days. I didn't expect it to happen this quickly at all. I was able to sleep for six hours straight last night, and it was finally my bladder that woke me up at 5:00 am. I went once then and again when I got up at 8:00 to take a pain pill. I finally got up for the day around 10:30 and ate some breakfast and went again after breakfast. Things were quiet until after lunch and I had to go twice between about 2:30 and 4:00 when I took a nap. I went one more time when I got up at 6:30 and things have been quite since (about three hours). I did eat some dinner, so I expect to go at least one more time before bed. I guess I will end up around seven times for the day, maybe eight if I go twice before bed or something. That is what I hear from people who have a "mature" pouch after six to twelve months! I hope this means things will continue this way for me, or even maybe get a little better. I'm not using any Imodium or fiber supplement at the moment either. I'm quite amazed by the whole thing. It's like a miracle, really.

People keep asking what it's like to have the bag gone and all I can say is right now it is still weird to me. I do find myself reaching down to pat it to check if it needs emptied. Of course, it's not there. I took a shower today for the first time since surgery and that was strange. It was nice to not have the bag flopping around, but it felt weird to look at that part of my stomach and not see a stoma sticking out. It felt really weird to step out of the shower without an appliance on and just be able to leisurely towel off without having to hurry to get a new pouch n before poop started going everywhere. That was probably the strangest moment yet. I'm sure I will get used to all of these new experiences. I didn't realize how ingrained my ostomy was in my routines after just ten months. I am excited to have it gone again, but more than that I am grateful for everything it did for me as far as allowing me to get healthy and serving as that bridge between my old life with illness and this new reality. I learned so much about myself from this experience as well as a renewed sense of compassion for other people. I also met some amazing people out there in the IBD and ostomy support communities and I continue to be grateful for their guidance and support.

Going forward from here will continue to be an adventure. I need to learn how to resume my normal activites and how the pouch will react to them. I'm interested to see how running will be, though I have a few weeks before I can give that a go. I have six weeks of the GI soft diet ahead and then I start reintroducing foods again and working my way toward a normal diet again. I can't wait for fresh fruit and veggies! Salad! Cherries! Apples! Yay! :-)

More waiting, and I'm bad at it!

Oh you guys! I have to be the most impatient human on the planet. Things are moving along though. Tomorrow I make the drive to Cleveland Clinic to have my imaging done and make sure all is well and we can move forward with the last surgery. I really, really, really need this imaging test to come back with good results. I am so ready to get this last part over and done with. I've been having dreams about what it will be like to wake up from surgery, reach down to my stomach, and the bag is gone. Wow. I can actually imagine it. More than that though, I've finally allowed myself to start making plans for after and I don't want things getting delayed or rearranged. I know it would be a pretty hefty mental blow for me right now if I have to postpone or change some of this stuff. I'm ready to have my life back and have some more say about where it goes.

First of all, I'm training so that I can go back down to Georgia and run the trail half marathon I had to give up last year when I got too sick to put the colectomy off any longer. I prefer having this surgery and recovery in the earlier part of the training cycle as it seems like it will be easier to bounce back and rejoin my group for single digit mileage rather than 10, 11, or 12 miles later in the season. I'm still working with the run/walk group and went four miles with them last Saturday. Yesterday I managed 2.5 miles on my treadmill at home with no walk breaks and only about 60 seconds off of my training pace from the later part of last season. Feeling pretty pleased with my progress. The running is coming back faster than I thought it would.

The other big thing is that I've decided to go to school this spring and start working toward an RN. I've been fortunate enough to have some beautifully compassionate and amazing nurses throughout this process and they have inspired me greatly. I've been really restless about what to do as far as work goes once this is all over, so it feels good to have a sense of direction and focus about the whole thing now. I have an appointment with an academic advisor on Monday to go over my transcripts and help determine what classes I need to sign up for, etc. There is a bit if work to do as I let my GPA get a little sloppy when I was previously trying to take classes while working full time with a small child, a husband, and a chronic illness. That's ok though, I'm not afraid of a little hard work and I know I can get the grades I need to bring that number up. The boys are in preschool full time now, so there will be plenty of time to attend class and study. I'm hoping to start in March which is another reason why I don't want to see this last surgery delayed.

I'm not entirely sure what to expect from the test tomorrow. I know they will give me an enema with contrast and take some pictures, but that's really all I know. They gave instructions to bring a set of supplies to change my appliance, but I don't know if that is because they will make me take it off for the test or just because it might leak or something? I've heard of people having them pop off because the contrast fills up the bag. I suppose different hospitals might have different routines. I guess I will find out tomorrow, huh? I'm also anxious to know when my surgery date will be. I know Dr. L is supposed to be out of the office January 12th-21st, but hopefully I can get in right after that. I'm so ready!

World's Worst Blogger.....

Sorry I have been so sporadic about updating. This is a really insane time of year and there are only so many times I can tell you guys about how much I hate this new stoma without driving us all insane. I do have a couple of items to report though.

Back on 12/5 I went to see Dr. L at the Cleveland Clinic for my regular six week post-op visit. I was able to drive myself which was a big improvement. Everything was good. I saw the stoma nurses again and they were pleased with how the Marlen appliance was working for me. I can't remember if I mentioned it before, but I'm now using the Marlen one piece with deep convexity along with a Hollister convexity ring. It's super duper convex, but it's protecting my skin which is now all healed except a tiny red area right at the opening of the stoma. I'll take it! They also ran labs and there were no signs of lingering infection. My hemoglobin also improved from 7 to just shy of 11 which made me very happy. I've started taking vitamins again, so that should help more. I need to be at least 10 for surgery.

Speaking of surgery, the next step is a return to CC for a gastrogeffin enema imagining procedure on January 11th. They will introduce a barium type enema into my rectum to fill the j-pouch and take pictures to make sure it is leak-free, completely healed, and ready for takedown (reversal) surgery. Dr. L will be out of the office January 12-21, so I'm hoping to take the first available surgery appointment when he returns. I am so ready! It has been such a long road and I feel like I can see the finish line now.

In other news, I am back to running! Not far and not fast, but it is still exciting! Last Saturday my training group started up for the winter season and I was able to do a 2 mile run/walk workout (run 4 minutes, walk 1 minute) without any trouble. I was so happy to keep up and be able to finish the whole thing. Super exciting! I will have to take a little break when I get this last surgery, but I think it will all work out fine.

That's it for me aside from the madness of getting ready for Christmas. I'm really happy to be feeling well and at home with my kids and husband right now. I'm looking forward to seeing our lives return to a more normal state in the coming year. Well, normal for us at least! Happy Holidays and New Year to all of you. :-)

What a difference a week (or two!) makes....

I am so behind in updating and now there is so much to catch up on. Ok, begin at the beginning....

I made the trip to Cleveland Clinic on Monday the 21st courtesy of my wonderful mother-in-law who took a vacation day to drive me up and back. It was nice because it meant my husband didn't need to miss more work and we didn't have to haul the kids along with us. I was very anxious about the actual removal of the drain. It's kind of funny, but I realized something about myself and pain that has changed with this process. When I had UC, I was in some amount of pain almost every day. It might have been just a little, or some days it may have been nearly debilitating. I dealt with it though and lived my life because that was the only real choice I had. The moment they removed that diseased colon from my body, that pain went with it. In the days following my first surgery, I had new pain to deal with, but there was much relief to have the pain from the illness gone forever. In the time since, I've pretty much felt good. When I had to go back into the hospital for the second surgery, the pain cycle got started up again with lab tests, IV's, another incision to heal from. Ultimately there was the pain of the abscess, an ER trip with more labs, an IV, and a straight catheter. Finally there was my admission back into the hospital which came with two more IVs, daily blood draws, and the real star of the show....the placement of the JP drain. Even once the drain was placed, it continued to hurt and ache inside my body and there was a stinging sensation at the insertion site when I moved. It seems that the further removed I become from that daily disease pain which I so stoically endured, and the more pain I encounter through the medical process, the lower my tolerance for the new pain is and the stronger my desire to avoid it. I become incredibly anxious now about everything they need to do to me wondering if it is going to hurt and how much. Thus, my mindset approaching the removal of the JP drain.

I told Dr. L I was nervous about it. He was snipping the couple of stitches and asked me a question about something. I started jabbering away and the next thing I knew he was standing there with the whole drain in his hand. He had pulled it out and I hadn't even realized it. He was quite pleased with himself, and I was very relieved. They put a band-aid over the small hole and he told me to wait 24 hours and then I could shower. Happily, I never had much drainage from my insertion site after removal and a band-aid remained more than adequate. That first shower I took was heavenly! :-)

Back to my visit on the 21st...Dr. L wanted to have a look at my stoma. I took the opportunity to tell him how much I hate this one and how it's not nearly as nice as the first one was. I wanted to know why he made it this way. He explained to me that, unlike my first stoma, this one is getting "pull" from both up and downstream directions. In order to give more bowel for the stoma, he would have had to take from the pouch and that is the lesser ideal over the long term. So, I guess I'm dealing with this difficult stoma for three months so that I can have the best j-pouch possible for the rest of my life. They paged the stoma nurses to come and take the pouch off and evaluate me for any changes to make to the appliance since I was still having skin problems. He said he would come back to look at things once they had the pouch off. I was feeling pretty tired at this point, and I must have looked it, too because his nurse, Marlene, had me lay down on the exam table. She put the feet and head up and made it almost like a Lazy Boy. Then she got me a pillow and some sheets and covered me up. She told me to just rest until the nurses came and turned all the lights off except for one small desk light. It was really nice of her, and I actually did nap a bit.

The stoma nurse arrived and removed my pouch. The peristomal skin was pretty red, including a small ulceration at the 6:00 position. She agreed we needed to try something else because the setup I was using was not protecting my skin adequately. She covered my stoma up with a big stack of gauze and went to get supplies. When she came back, we had to do a little clean up and new gauze was put in place. She explained the new appliance set up to me. We were going to try a one piece pouch from Marlen. It was a deep convexity and we were also going to put a convexity ring behind it to make it even deeper. This would push the skin down and away from the stoma more aggressively and hopefully help separate things enough to protect my skin from the output as it came out. We were all ready to go, except Dr. L was nowhere to be found. We waited and waited while the gauze had to be replaced multiple times. I became increasingly anxious as I waited. There was a weird feeling of vulnerability or exposure that built up in me as I lay there without my pouch on. I felt naked and like I wasn't in control of the situation at all. At one point, I started to cry and I couldn't understand why. The stoma nurse comforted me and told me it made sense to be upset. She said from about the age of two years old we expect to be able to control our bowels and they had taken my only means to do that away and it is upsetting to lose that control. I hadn't thought of it that way, but yes....it made sense. The wait ended up being just over half an hour. When Dr. L came in, I was still upset and I gave him an earful about having to wait so long with no pouch. He apologized and took a look at the stoma. He agreed it was a difficult one and said we would keep working with the stoma nurses until we found something that would help with my skin problems. I got my new pouch on and felt much better.

The plan from here is to go to my 6 week follow up on Monday 12/5. Six weeks after that, I will go back to have imaging of the j-pouch done to make sure it has healed properly and is ready for service. Once that is completed, I am ready for step 3. I can't believe it's only about seven weeks away at this point! Finally in the home stretch of this lengthy crazy process.

The whole experience with the abscess and related illness set me back quite a bit in terms of my recovery. I was very weak and tired and extremely anemic. I had very little energy to do anything. I managed to improve enough to go to Thanksgiving dinner like I wanted. I even managed a trip to my dad's house the following day. On Saturday I had a temp of 100 and was scared that I was going to go downhill again since I was off of the antibiotics at that point. It turned out to be a one day thing, thankfully. On Sunday I was still kind of dragging. I woke up Monday morning suddenly feeling great! I still took it easy for the day, but then I woke up yesterday feeling great again! :-) I also gained back three of the pounds I had lost which was a wonderful feeling. Yesterday ended being a big day. I actually walked on the treadmill for ten whole minutes. Not much, but more than I could have done last week. I drove myself to my first Weight Watchers meeting since surgery. I weighed in below my weight loss goal and am now on maintenance. After six weeks I will earn Lifetime member status which means free meetings for as long as I stay within two pounds of my goal weight.

Really though, the best thing of all happened this morning. I'm one day shy of being six weeks out from surgery, but I finally got to pick up my baby boy again. He was fussing in the crib and my husband was still in the shower so I (very carefully!) picked him up and took him back to bed with me so we could cuddle and hang out. He latched right onto me with his little arms and it felt so good to get a baby hug again! We cuddled in my bed for a bit until my husband was ready to take him and dress him and stuff and he was smiling and giggling the whole time. I think he missed me, too. :-) I won't go crazy with carrying him around for awhile, but it is nice to be able to do it a little.

I feel like I'm finally turning the corner with this recovery. It took a really, really, really long time to get here, but I made it. Now I just need to let my strength and endurance build a little more and I'll be all set. My running group starts back up on 12/17 with a two mile workout. I'm confident I will be able to at least go with the walking group for that one. I will have to (patiently!) see how things progress from there.

Feels good to be back in the world again.

Tiny update....

We changed the dressing on the drain insertion site last night and zero drainage this time. I'm feeling good about that! I have noticed it is less painful than it was initially. I believe these are all good signs. Still no fevers or nausea, so I'm a happy girl.

I have a tiny bit more energy today than previous days. I actually made my own breakfast and dinner and was able to work on a crochet project for a bit. Huge improvements! Also managed a pouch change today, too which was completely wearing me out before. I feel like I'm turning the corner. I can only hope things continue in this positive direction once they take the drain out. The little bulb is barely collecting anything, so I'm not too worried about the abscess cropping back up when they take it out. I will be vigilant though! First sign of fevers, etc and I will be on the phone. Not going to get run down like that again.

Right now I'm just hoping to have the energy and stamina to enjoy Thanksgiving with my family. That will be a victory. :-)

So that's what it was....

Just past midnight on Tuesday 11/8 my husband and I were trying to get to sleep for the night. I had continued to deteriorate and was at the point where I asked him to cover up the mirror in our bedroom because looking at my reflection scared the hell out of me. I had talked to my surgeon's nurse that evening and the plan was that I would return to the hospital Tuesday. She was supposed to call me in the morning to tell me if they had a bed for me, etc. As we were trying to go to bed, I was overwhelmed by my own weakness and the pain that had developed in my low right abdomen. Every instinct I had was telling I couldn't wait until morning, I needed to go now. I finally admitted to my husband that I was scared I wouldn't be ok at home overnight and we made the decision to load our sleeping kids into the car and drive up to the ER at the Cleveland Clinic.

I don't remember much of the drive. For me it was a combo of sleeping and staring out the window as the scenery went past. Both boys slept the entire way. We arrived right around 4:30 a.m. I was pretty relieved to see there weren't many people waiting in the lobby. I was even more relieved when my name was quickly being called. Little did I know that this was simply part one of this crazy multi-layer process. I was being triaged. They took vitals, I gave a urine sample that looked scarily like root beer. I caught another look at myself in that bathroom mirror and I looked like I had escaped from someone's Halloween display. And we waited. At some point my name got called again and I got registered. I was being wheeled around in a wheel chair because I was too weak to walk more than a couple of steps. They gave me some sheets and I squished myself onto a small bench and fitfully slept while my poor husband wrangled two boys who are definitely not used to being up at that time of day. About two hours passed and finally they were calling my name for real. On our way to the back, the nurse told me she needed to warn me about the room they were putting me in. "Does it have a bed?" I asked. She said it did and I told her that was all I cared about at the moment.

It turned out the room was their "security room" that they use for people who are mentally disturbed or otherwise violent. The walls are plain, there is no television. The door is heavy, bolts closed from the outside, and the tiny window in it is covered from the outside as well. It feels a little creepy, but there is indeed a place for me to lay down so I overlook all of this. By now, I needed to empty my ostomy, so we attempt to get a nurse. The young guy who comes in is very confused about this whole ostomy business and isn't sure what to do with me. I finally convince him that I just need a container, some paper towels, and something to clean my hands with when I'm done. He comes back with a bedside urinal, paper towels, and some disinfectant wipes. He put everything on the bedside table and vanished. Ummm, thanks for all of your help. Once again I have to say how grateful I am for my wonderful husband. He helped me to sit up on the side of the bed and then held the urinal for me while I emptied the pouch. That, my friends, is love. We didn't have anything to do with the container, so we decided to close the lid up and hang it on the side of the trash can.

The very next person who showed up was this muscle bound dude who looked like a bouncer or bodybuilder. He was huge! I couldn't help myself and made some crack about how he looked like he belonged with the room as the enforcer incase the crazy folk got out of line. He was very good natured about everything. Turns out his whole job was to get an IV line in me and draw some blood for labs. In my current state, this was no small task. All the good veins have been pretty thoroughly abused at this point and I'm severely dehydrated. Somehow this meathead looking guy was sweet as could be and did an amazing job of getting a line in with me barely feeling a thing. I was so grateful! He also was nice to the kids and brought some juice and stuff for them. From there on, my experience in the ER was less than awesome. My surgeon's nurse called me to tell me they wanted to admit me, so I had a bed up on the colorectal floor where I normally stayed. They wanted me to get a CT of my abdomen first though. By going in line as an emergency patient, I would get it a lot more quickly than as a regular patient from the main hospital. Once it was established that I was on fluids and would be getting a room, the decision was made to have my poor exhausted husband take the kids and go home so they all could sleep. Once they were gone, things got interesting in my "special" room.

A random nurse brought me a 900 ml container of oral contrast and a cup of ice and told me I had 20 minutes to drink the whole thing. I had two issues with this....first of all 900 ml of anything drank in 20 minutes wasn't going to do anything but flood my bag. Secondly, a big part of the reason I was in the ER was the inability to drink enough to keep myself hydrated. If I could possibly take in 900 ml of anything in 20 minutes, I probably wouldn't be there. So I rang my nurse while I started working on drinking the stuff. I asked him if he was sure I had to drink all of this stuff because I didn't have a colon. He looked at me like I must be from another planet, so I tried to explain that where normally someone would drink this and it would go into their stomach, then small intestine, then eventually large intestine....for me it was going to go into my stomach, small intestine, and then start dumping into the ostomy bag. There was no way I needed to drink that much and I wasn't sure I would physically be able to in the 20 minutes I was given. He left and I kept drinking as much as I could. He came back and told me I was supposed to drink all of it but that I had two hours to do it. Now I was even more confused. Anyone with an ostomy knows that if you drink something, in two hours it is going to be completely gone. I kept drinking because I knew I needed to get at least enough of this stuff in to get it coming out in the bag. Finally the unit doctor stopped by and I explained my predicament to him. He agreed with me that it made no sense to try to drink the whole thing. He encouraged me to drink as much as I could and when it started filling the bag to drink a little more then I could stop. This seemed reasonable to me. As it turned out, I drank about half of the contrast and my bag started filling pretty rapidly (had to empty it twice in a row). I did drink a little more after that and then the CT tech came. He was satisfied with the contrast going into the bag and agreed I never should have been given that much to drink in the first place. He was very nice and the CT process was quick and uneventful.

When he brought me back to my dungeon room, the tech told me he was going to tell my nurse I was back and they should be moving me pretty quickly since my test was done. It wasn't until he was gone and the big heavy door was closed that I realized the rails were up on both sides of the bed and my call light was nowhere to be found. I was stuck in the crazy room with no way to get help. For awhile I tried to just go to sleep, but the lights were really bright and I started to feel anxious about being stuck in there. I was also in a good amount of pain and wanted to find out if I could have something to help with that. I tried to just wait, but there is no sense of time passing in that room with the blank walls and no clock. I tried to call out a couple of times, but it became clear pretty quickly that nobody could hear me. The more that went on, the worse my anxiety got and the more pain I was feeling. I finally just got too upset and started screaming for help which made me cry at the same time. Finally, a random technician slowly opened the door to see what was going on. She must have decided pretty quickly that I wasn't in that room for the intended purpose because she saw I was sobbing and she came running in to calm me down. She got the call light for me and made sure the door was propped open when she went back out. My regular nurse eventually came and put some morphine in my IV and I was able to sleep for a little while. The door to the room stayed propped open with a chair until I was transferred out of there. I wouldn't let anyone close it after that!

I eventually got moved to my regular floor where they added IV antibiotics to my regimen. At this point I wasn't allowed to drink anything because they weren't sure if I would be going into the OR pending the results of the CT. My mouth was so dry that my lips were sticking to my teeth and I could barely speak. They finally agreed that I could have some sponge swabs dipped in water to wet my mouth. That helped quite a bit and at least let me answer questions when they came to talk to me. It turned out that I had a collection of fluid in my lower right abdomen, but they were initially unsure as to whether it was a leak from the j-pouch or an abscess. Eventually it was determined to be an abscess and they told me I would be having a drain placed using a CT scan guided needle. I was terrified to have this procedure done. I told the resident that I wanted to be asleep for it. He eventually sent my surgeon to see me and I cried while I begged him to make sure I didn't know what they were doing for this process. He told me I couldn't have general anesthesia for it, but he told me he would make sure I was taken care of. I was given 1 mg of Ativan prior to even leaving my hospital room. When I arrived in the room where they were going to do the procedure, there was an extra nurse there who's sole mission was to give me Versyd and give me more if I needed it. They gave me a shot of something in my stomach to numb me locally and got started. A few times throughout the procedure, I called out to that nurse to help me and she gave me more meds. I don't remember much about it except that they would work a bit, then push me back in the machine for pictures, then work some more. I remember seeing these large rods they were using at one point and feeling sick. I can also remember them drawing two large vials of yuck out of me and being able to smell the fluid in the room. I definitely had an infection in my body which is what I had been fighting so hard for almost a week. Finally, it was over and I was pretty groggy for awhile from the drugs.

I stayed in the hospital from Tuesday morning until Saturday. From the moment they drained the abscess, I never had another fever. It was amazing how much better I felt with that junk out of my body. At one point on Wednesday I attempted to go for a walk around the unit. It was all I could do to complete one lap. I wasn't dizzy, but my legs were so weak I felt like they were barely able to hold me up. My surgeon visited me at one point and told me I had depleted everything a body could deplete. My iron stores were gone, my muscles were withered away, and I was extremely dehydrated. I had no reserves. He tried to stress to me that my recovery was going to be slower going because of this set back. I am taking his advice to heart and really taking it easy now that I am home. I'm in no hurry. I can feel that this is going to take time.

I did come home with the drain still in place. That has been a bit of a nuisance, but nothing too horrible. Once a day I have to flush it with saline and empty the container that looks like a little hand grenade. It isn't collecting much now and I have an appointment for Monday to hopefully get it removed. The only issue I'm having is a lot of drainage around the insertion site, but that seems to be pretty common when I talk to other people who have had them. There is no increased pain, no redness, and no fever so I don't think it is getting infected or anything. I'm also on Flagyl and Cipro (antibiotics) for two weeks. My surgeon finally put me in Immodium to slow things down output wise since I was still struggling with that. I'm taking one before each meal and one at bedtime and it has things down around 900 ml/24 hours which is good.

So, it's been a rough couple of weeks but I finally feel like I'm going in the right direction again. I can't adequately explain how sick and run down I got....let's just say at the end it scared me and I don't scare too easily. Now I'm able to move about my house a bit and I can eat without feeling sick. It's just going to take more days of good eating and drinking and rest to get my strength built back up. Then we will go from there.

So weird

Yesterday I actually felt pretty good for the first time days. Fevers were much lower, I ate a bit more food, I even sat in a recliner in the living room and talked with my husband like a normal person. The home nurse came and removed my staples and observed while I changed the pouch. He was fresh out of nursing school and had never seen an ostomy except in videos. I made sure to explain everything I was doing and he asked lots of questions. He said he learned a lot from it, so maybe that will help someone else some day. Oh, yes....even the brand new rookie RN realized immediately that my stoma was not the norm. He kind of hesitantly asked me if it was supposed to look like that, so then I got to explain to him all the issues I've had with it. "That must not be fun." he said. Ummm, no....it really isn't. I always dread the staple removal process. I know it's not overly painful, but it freaks me out none the less. So imagine my delight when he said something along the lines of "Well, I've taken out sutures before and I hear this isn't too different.". That's right....first time for that, too. I emphasized that I get really nervous and just asked him to use some extra caution and take it easy. He did a really great job. The incision looks good. There is still a bit of drainage where the hole is from the axiom pump, but that is to be expected at this point.

Going into Friday evening I was still feeling pretty good. Shortly before bed though, the wheels came back off and the overnight was full of Hugh fevers, sweating through my clothes, and just feeling miserable. At one point I jolted awake because sweat was running down my side and I thought the bag was leaking. It was fine. Throughout today I've just been trying to drink as much as I can, eat a little (haven't managed much), and go from dose to dose of Tylenol while fitfully sleeping. This, my friends, has been one miserable experience and shows no signs of letting up soon. I don't really know what to do at this point. As happy as I am to be home, I sort of wish I was back on H5 with my awesome nurses and aides looking after me. I definitely can't take care of myself and my poor husband is doing all he can. I have no idea how long this will go on. Right now it feels like no end in sight. I'm so exhausted and defeated. There aren't even words for it.

Well, that was interesting....

In the couple of days following my last posting, I kept getting elevated temps in the evening. They weren't much, but they were consistent and really made me feel pretty bad. Finally, on Tuesday the fever hit me in the middle of the day and with a bigger punch. That night I would get close to 103. I called in to the resident on call at CC and he went over my symptoms (aside from the fever and body ache there really weren't any) and suggested I call into my surgeon's office the next morning to see what they wanted me to do. Wednesday morning I called and spoke with Marlene and learned they wanted me to go into my local ER for some labs and IV fluids. At this point, my temps were spiking up over 103 and I felt like I'd been hit by a bus. I had no specific pain anywhere, but we had to rule out surgery related infection and I was in desperate need of the fluids. I felt so sick I just couldn't drink enough to keep up.

Once we got checked into the ER I got an IV started, labs drawn, gave a urine sample (which they then came back and did a straight catheter for to get a new one.....that sucked hard!!), and got chest x-rays. The doctor was pretty happy with how my stomach felt and didn't seem to think there was anything going on in there, but these tests would help rule out things like incision infection, abdominal abscess, pneumonia, and UTI which could all have been causing me the problems. I know we were there for a few hours and during that time I got very sweaty, went to the bathroom a couple of times, watched some TV, and drifted in and out of sleep. They finally came back to tell me that everything from the tests was normal and they had no reason to suspect infection or any of the other items they were screening for. If things got significantly worse or I developed new symptoms, I was supposed to come back. With that, and a prescription for anti-nausea meds, we went home. I crawled in bed and stayed there for the remainder of that day and all of the next. I really can't remember ever being so sick in my adult life. As I feel a bit better today and temps are staying closer to normal, I believe I stumbled upon some virus with really horrible timing. Today I've been able to be up and sit in a chair in the living room for several hours and I've eaten twice. I'm about to figure out something else to eat here in a few minutes. I'm glad I got things stabilized because I lost three pounds per day two days in a row and that is less than fun. I still feel very weak and I'm not about to push myself on anything, but it does feel good to be out of bed a little. I'm just hoping I am well enough tomorrow to go get my haircut. :-)

Ugh....

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.

Spartacus!

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 why....it 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. :-).