Wednesday, March 30, 2011

Not Much Going On

I got the home health nurse set up and a nurse came yesterday to do my intake and establish care. It was basically signing 500 pieces of paperwork. I didn't need anything from them yet, so there wasn't much else for her to do. Another nurse is going to come tomorrow to help with changing the pouch. I'm a little bit nervous about this as it will be the first time doing it at home. So far the two changes in the hospital have gone pretty smoothly though, so hopefully this one will be no different. I am curious to see how I do when I go it on my own, but I really can't do it yet. The staples from my incision freak me out too bad. I can barely look at them, let alone mess around too much in the area for the changing. It makes me feel light headed looking at the staples. Thank goodness they come out on Tuesday. Then I'll have steri-strips which don't look as Frankenstein-esque. Then I'm willing to start doing my own changes. Call me a baby if you want to, but that's where I'm at.

Looks like I can order my supplies from Edgepark. I placed the first order yesterday and he said I should have it by the end of the week. It will take a little longer than normal because they have to verify my prescription, etc. The guy I talked to was really nice and made ordering super easy! I'm so glad because I still find the supplies kind of confusing and was overwhelmed at the idea of having to figure it out on my own. No need to worry....the ET nurses at the hospital figure out what I needed and gave me the contacts to get those items to my house. Easy peasy.

My output has really improved. The volumes and consistency are more in the normal range which is a huge relief. I'm able to eat a little more and am becoming more confident in my new system's ability to process the food. The only issue I'm having at the moment is weight loss. I lost 15 pounds during my week in the hospital. I got on the scale again today and am down another 5 pounds. Now, I have it to lose so this isn't an urgent situation by any means. It is too much too fast though and I'd like to see it slow down a bit. All I can do is keep eating and keep track of where I'm at. Hopefully things will moderate a bit in the coming week. Otherwise I'm going to be at that goal weight I want pretty quickly! I kid...I realize this is NOT the way to do it at all. I feel like I lost a lot of muscle in my legs already. That bums me out.

Tuesday, March 29, 2011

Free At Last!

Yesterday morning the doctors came in to do rounds and the main fellow to my surgeon said to me, "You look like you have the smile of someone who wants to go home!" and I assured him I really did. We went over some stuff and he told me I could be discharged. My output had come back down, I was managing small amounts of soft food without issue, and my IV had been cut back again without any problems. I was so excited! I got in touch with my husband and other family members, and then the waiting started.....

I am not writing this up to complain in any way, more just to give a heads up to people who might be going through this in the future. When they come in and tell you that you can go home, there is still a whole bunch of stuff that needs to happen first and it can take awhile. Be patient, but also be persistent in asking what is next and who will be doing it, when can you expect them, etc.

In my situation, the discharge papers were written up, my prescriptions were ready, but I still needed one more meeting with the stoma nurse so she could change my pouch and give me another lesson before going home. Apparently they were super busy all day because I never got to see her until about 3:00 p.m. This was after the doctors telling me at 8:00 a.m. that I could go home. So, was a little frustrating. Now I know, so I won't be so amped up next time. I finally got my lesson and she gave me my scrip for my ostomy supplies and I was free to go. We wanted to get something to eat in the cafeteria, so I walked to the elevator on my own. We ate a little food (I had macaroni and cheese) and then I was able to walk to the doors and wait while my husband went and got the car.

The car ride home was a little rough as the delay meant the last dose of pain meds I took had pretty much worn off by then. I made it though and man did it feel so good to walk through the door and into my own house! I am so happy to be back here with my husband and my boys. It felt so good to sleep in my own bed without all of the strange hospital noise waking me up all of the time. It also is nice to get whatever kind of food sounds good to me. I really think this is all going to improve the recovery experience greatly.

Today I need to call and arrange for my home health nurse. I also need to make a call and see if I can use the company I would like to for my ostomy supplies. Cleveland Clinic gave me a direct contact at Edgepark who will help with verifying my insurance coverage and placing my first order which is really helping to make it easier for me. Hopefully I can use them.

Sunday, March 27, 2011

Live from the Cleveland Clinic

Today is the first day I really feel well enough to write, so I apologize for the delay. I've been hitting up Facebook a little bit here and there and texting family members a good bit, but dragging out the laptop and having coherent thoughts was just too much work up until now. Let me try to catch things up...this will probably end up being silly long!

Tuesday was surgery day. I had to check in at 5:30 a.m. We walked over from our hotel across the street. There was this weird process where you stand in a couple of lines, but I finally made it into the pre-op area. I just want to take a moment to point out that every nurse I came into contact with from this point on was fantastic (includig those on the recovery floor where I am now). Anyway, they had me change into a gown and then it was the typical stuff of getting an IV and answering a zillion questions. My husband got to sit with me for a little while and then it was time to go back to the OR. At that point I met a few more folks, including anesthesia, and I was amazed at how they all went out of their way to make me feel at ease. It was really helpful. The last thing I remember was taking some deep breaths through a mask and then I was out. I woke up in the recovery area and was surprised that I didn't feel like I'd been hit by a truck as I expected. I can't remember much else about that day, except I had a really good aide who helped us a lot and my husband was very focused on making sure I did the things I was supposed to do like the breathing machine to keep your lungs healthy. I tried to get up and walk that evening, but I had to receive a dose of Ativan (panic attack!) and it made me too dizzy so we settled for a few minutes of sitting on the side of the bed instead.

The next day I was able to get up and slowly shuffle my way through the halls. It's funny because they make everyone walk so at any given time there are people strolling the halls with their IV poles. It's like some kind of weird parade. I had a lot of trouble with my catheter draining like it should so I was constantly feeling like I had to pee and having to ask them to check it. Luckily that came out Thursday morning and I didn't have to worry about it anymore.

The particular timeline for some stuff gets a little fuzzy for me. I guess that's what pain meds will do to you. I started out on just ice chips, then got bumped up to sips of clear liquid, then unlimited clear liquids. Then they released me onto a GI soft diet. This was Friday. I got to order actual food...hooray! Well, I went a bit overboard, ate more than I should have, and ended up with a partial blockage and tons of really painful gas that had nowhere to go. Talk about miserable. I spent Friday night on IV pain and naseau meds, broken out in a sweat, and just feeling like I would die. The nurse and aide I had were so good to me. They kept putting cold cloths on my face and trying to comfort me. They emptied my ostomy all throughout the night so I only had to get up if I needed to go pee. I finally got through to morning and was slightly better, but the setback was enough that my IV had to be turned back up and I was going to be delayed in going home.

I spent Saturday resting a lot and sipping liquids. I ended up not even needing pain meds for most of the day on Saturday. I just wasn't having any problems. I did take some for bed time to help me sleep. By this morning, I really felt like I'd turned a corner. When the doctor on call came for rounds, he said we're looking at another 24-48 hours so they can slowly cut back my IV again and see if I can hold steady without it. There is some concern because my ostomy output is pretty high, but he said that can be typical for right after surgery especially since I was blocked and all of that got backed up. So we will monitor it and I keep drinking the hydration drinks so I don't get dehydrated. I'm going to slowly introduce some more solid stuff over the rest of the day and hopefully that will slow things down a little, too. I hope so...I am ready to get out of here!

Monday, March 21, 2011

Pre-Op Day

Talk about sleepless. Wow. My mother-in-law got here a little later than expected last night, so by the time I ran her through all the baby care notes, got her situated, had a glass of wine (or two), and grabbed a shower it was 1:00 a.m. when I was crawling into bed. Oh, there was also the trip my husband had to make to the 24 hour pharmacy to get eye drops for Kid #1 who seems to have picked up pink eye at preschool. Lovely. At 2:30 a thunderstorm woke me up. Kid #1 was crying at 3:30 and I found him sitting on his bed with all of his covers on the floor and unable to fix any of it in his half asleep state. I got him squared away just in time for the baby to wake up hungry, so I nursed him and then went back to bed. And I laid there and stared at the ceiling. I finally decided to just get up since our alarm was due to go off in 45 minutes anyway. I'm really glad I'm not the one driving this morning.

One great thing happened yesterday! I've been coaching (prodding, bribing, begging) the baby along on saying his first word and pretty much repeating "mama" at him 24/7 for several days now. It just seemed like it was time for him to start saying something and it might as well be that, right? Well, two days ago I swear it came out of his mouth once but he wouldn't do it again and we weren't quite sure. Then yesterday I had him laying on the changing table and he looked up at me and said, "Ma, ma, ma, ma!" and started laughing. It was so great! Once he had it figured out, he just kept saying it constantly. Needless to say, my heart was very happy. Quite a nice little gift the day before I have to leave my sweet boys.

So today is Pre-Op Day. When you travel to the Cleveland Clinic for this type of surgery, they schedule 5,000 appointments for the day before you are due to have surgery. It's going to be a whirlwind of a day, but it's meant to minimize the number of times you have to travel to the hospital, so I appreciate them being able to coordinate it all like this. Our first appointment is at 9:30 this morning with the stoma nurse and then we go through several other appointments including meeting again with the surgeon, lab work, patient education, and a few things that I'm not really sure what they are. I haven't figured out when exactly we will eat lunch or anything like that. I hope we can figure that out as my husband I both get super grouchy when we're hungry so things could get ugly if we don't get food at some point. I'm going to try to pop back in here from my phone as we move through the day to give my impressions of the different appointments, etc. I'd like to kind of capture what this day is like to help me remember and so people who are getting ready to go through it later will have something of an idea.

For now....breakfast.

Ok....I finally made it back. I'm adding this update from my phone, so please excuse me if it is even more hackneyed than my usual stuff. All I can tell you is pre-op day is no joke. Somehow the folks at Cleveland Clinic make everything run incredibly smoothly, but it's still a very long day with a lot of stuff to get through.

We started off with my surgeon, his nurse, and his fellow who will be seeing me while I'm recovering. They went over the procedure with us again and answered our questions. Then my surgeon had me sit on the table, stand up, and lie down so he could see where my stoma should be located. He made some marks with a pen and then his nurse told me she was going to tattoo me. I thought she was joking at first, but she went on to say she was going to drop some ink on my skin and then poke me three times with a needle. I made a joke about it being like a prison tattoo but she said she wouldn't know anything about that.

After we were done with them, we got a visit from a med student wanting to know if I would participate in a research study. All I would have to do is answer some questions before surgery and then at various points after for up to a year. I agreed to do it. It's little effort on my part and if it helps to improve care for future patients then I am all for it.

Next up was a duo of stoma nurses. They went over some patient education material and answered some questions. They also reviewed the stoma site selection to make sure it was going in a good spot. They will be visiting me during recovery to teach me how to empty and change the pouch and help me figure out which appliances will work the best for me. Someone will also come to the house for awhile to help with this until we are all comfortable I can take care of things on my own. Very cool.

At this point we were able to grab some lunch. I do not need to do bowl prep, just eat lightly for the rest of the day and no food or drink after midnight. Once we ate, it was time to check in at the lab. I had two separate blood draws by two different technicians. The first guy drew my standard labs plus vial #1 for blood typing. He second guy drew vial #2 for blood typing. I found it interesting that they do it that way to ensure your blood type is correct in the event you need a transfusion. Following the labs, we had some down time so we got some snacks and started wading through all the information we got throughout the morning. There is a lot! Then we had to see admissions where they made sure all of my insurance info was correct. Our last stop was an internal medicine doctor where my vitals were checked and a quick physical was done to ensure I'm healthy enough for surgery.

So yes, it was a lot all in one day, but they really run things well at this hospital so it wasn't as bad as I thought it would be. I check in for surgery at 5:30 in the morning so I'm planning to sleep very soon.

Saturday, March 19, 2011

Never Limit Where Running Can Take You

The title of this post is a quote from running great Bart Yasso. Man, is it ever true. I might just be having the best Saturday ever, and it's all thanks to running and the wonderful community I get to be a part of for doing it.

Let's say it's your last weekend with your colon. What do you want to do? This kid decided to run a half marathon. I did find an actual organized race down in Cincinnati that I could have driven down and run, but I decided I'd rather just go the distance with my Saturday morning training group instead. I ended up with three other runners who were at places in their training plan (and close enough to my pace) where they were willing and able to do the run with me. We had perfect weather conditions, most of the trail had dried out or been re-routed by our amazing Parks and Rec folks, and I was pumped up and ready to go.

I was able to run strongly at my desired pace up until about a third of the way into mile 11. At that point I had developed an ache in my left hip and I took a short walk break to let it calm down. As we hit our last water stop, both calves started cramping pretty badly. I switched between running and walking and was able to finish in 2:52. This is a thirty minute plus personal best and I am absolutely thrilled with the outcome.

The coolest part of the whole thing came as we rounded the last little bend to finish up. One of the guys running with me smiled and said, "Now you just need to go run through that finish line down there." I looked up and there was a group of runners from the training group waiting. They had created a finish line which they had stretched out and they all started clapping and cheering. It was all I could do to keep from crying as we ran that last little bit. My husband was waiting there with flowers for me, too. The guy who runs the training program took my picture and also gave me a shirt and a copy of Bart Yasso's book. It was so nice of them to do all of that for me and it really made the moment even more special. Funny side note: I later learned from one of the girls that they'd created the finish line from folded toilet paper. Any of my IBD friends see the irony? All I could was laugh.

I can't help but wonder what I could have accomplished if I would have been able to complete this training cycle. I will never know. I've worked at replacing that thought with wondering how much more I will be able to accomplish once I'm running with a healthy body instead of a diseased one. I can't wait to see where I'm able to go!

Friday, March 18, 2011

It's My Party

An eerie sort of calm settled in over me yesterday. Whatever anxiety fit I was having just sort of mysteriously vanished and I've felt pretty good since then. I made myself walk on the treadmill a bit which I think helped. I'd been ignoring that option as I prefer to run and am stupidly guilty of wanting to sit on my fanny and pout if I can't do that. I also got a nice walk in outdoors with the boys and my husband to go eat a little dinner. The weather was beautiful and I think that also helped my mood tremendously.

This is a weird thought and I wasn't sure I was going to share it, but I decided to go for it anyway. (You will learn, if you hang around long enough, that I am more apt to say more than I should than to lean in the other direction!) At any rate, I've been contemplating how weird it's going to be to not poop for awhile. I mean really, think about it. If you are blessed with a healthy digestive system, pooping is still part of your daily (give or take) routine. How odd do you think it would be to not poop for at least six months or so? Strange, right? Now...pretend you've been sick for four years with a disease that makes pooping an "issue" that can determine whether you can leave the house, socialize, play with your kids, etc. and you can start to imagine how bizarre this is going to be.

Because I'm a weirdo, I also have been applying this same thinking to the subject of farts. Yes, really...and I have a story. Tuesday was my birthday and I wanted cake. I've been having crazy blood sugar spikes due to Prednisone, so we debated whether or not we really wanted to make a cake. In the baking aisle at the store I happened upon a sugar free cake mix and frosting sweetened with Splenda. In chocolate no less! Sold! Tuesday I baked the cake, we frosted it Tuesday evening, and I used good manners and decorum and ate one reasonable piece (yay, me!) Fast forward to Wednesday. Husband was at work and Kid #1 was at school leaving just me, the baby, and the cake. The baby lacks speaking skills at this point, so there was nobody around to nark me out for eating a silly amount of cake. Oh, and a bunch of the left over frosting from the can, too. Umm, yes. As for Thursday....wash, rinse, repeat until I finally got fed up and threw the remainder of the cake out.

Note to self: when things are on an even keel, you can handle treats and use good portion control skills. When you are stressing, it is imperative you get that stuff out of the house ASAP!

An odd thing happened about half way through the day on Wednesday. I got gas. A lot of it. It was not easily ignored either. I thought it was weird, but not weird enough to really do much about it or consider where it came from. After repeating my debauchery on Thursday, things got really ugly. So much so that my husband threatened to move. It finally dawned on me that I had eaten an obscene amount of Splenda in a 48 hour period and apparently that's a bad idea. Today I was fine, minus the traumatic memory of Gasageddon 2011. I tried to convince my husband that it was just my way of making the most of my last days as a farter (for the immediate future at least). He was less than amused.

Tonight I'm a little keyed up, but about something totally unrelated. Tomorrow morning is my self-created half marathon. When I realized I wasn't going to make it my goal race in May, I decided I would run the 13.1 miles on my last Saturday workout with my training group. Well, it's here and I'm experiencing all of the night before jitters like I would for any other race. I have a pretty ambitious goal and I'm hoping I can get close to it. We went out for dinner and I had some nice spaghetti and bread to get my carbs in. I have everything all laid out and ready to go. Now I just have to figure out how to get to sleep here soon! I must admit that it is kind of nice to be worrying about something besides having major organs removed from my body.

Oh, a side note about comments: I have received some really nice comments here on the blog and I want to say thank you and that I really appreciate them. I'm not sure what the etiquette is for that sort of thing. Am I supposed to respond to you within that post? Do I have to answer all of them if I answer some? I have no idea how it's supposed to work. So I just want to say thank you and I appreciate you following my journey and leaving nice comments for me to read. I do think if someone leaves a question I should attempt to answer it, so I will try to do that if/when it happens.

Wednesday, March 16, 2011

Tick, Tock.....

I am really bad at waiting. Anyone who knows me well would tell you that patience is not one of my strengths. I have a really hard time just sitting back and letting things unfold versus pushing them along. This wait to head up to the hospital is making me absolutely crazy. I'm ready to get this over with. My anxiety level is through the roof today and the last couple of days. It's not fear of having the surgery, but there are a lot of unknowns I'm going to have to tackle head-long and I am freaking out a little bit.

This anxiety problem is compounded by a lack of running. Yesterday I attempted my first run since Saturday and it did not go well at all. I've had a nagging pain in my low left calf for a couple of weeks and last night it was just too much to ignore. With my planned half-marathon run this Saturday, I see no need to push through it. more running until Saturday which rules out a major source of stress relief. Instead I've been filling my days with episode after episode of The Office which I would normally watch while on the treadmill.

I'm still struggling with my food issues, but I had a bit of an epiphany at my Weight Watchers meeting last night. It's partly the stress and anxiety that has me reaching for food, but I think the bigger thing is fear of failure and what it means. This is not the first time in my life that I've attempted to lose weight. I've had some success in the past, but I've never made it to my goal weight (or even what I would call relatively close). Now I have to do it. Once I have this first surgery then I'm locked in. If I ever want a chance at the j-pouch, I need to lose fifty more pounds. It's no longer just to buy cute clothes, feel better, or run a bit faster. It's about regaining the choice of how my body handles one of its most basic functions. That's freaking huge, people. And it has me freaked out to say the least. I am trying to get a grip on it though. I keep reminding myself that I was already well on my way with this journey (half way to goal to be exact!). I keep telling myself that it's the same road, the same vehicle, the same driver...all I have to do is keep moving in my same direction. I can do it. I have to do it. I will do it.

I think tomorrow I will start packing my bag for the hospital. I have kind of a mental list going, but I think actually getting some of the stuff in the bag will help me feel less anxious because once it's in there, I can quit reminding myself that I need to take it with me (whatever it might be). My oldest is out of preschool on Friday and has requested we go to a "squirrel feeder store" to buy a squirrel feeder to put on the tree in our front yard. He also wants to go to a restaurant for lunch. So tomorrow will be my best chance to get the bulk of my packing done and out of the way.

My hope is that someday someone with UC will be reading this blog as they are considering surgery. Thinking about that person is what kept me quiet the last day or so. I knew I was freaking out but I wasn't sure I wanted to admit it and write about it. I finally decided that it's better to be real and put it out there. I know this is not the last time that some part of this is going to suck and I'll have to share it anyway. It's the reality and that is what I want people to know. So to you, future UC sufferer and blog reader: I will be ok and so will you. I just know it.

Sunday, March 13, 2011

Little Wonders....

With thanks to Rob Thomas....

let it go,
let it roll right off your shoulder
don't you know
the hardest part is over
let it in,
let your clarity define you
in the end
we will only just remember how it feels

our lives are made
in these small hours
these little wonders,
these twists & turns of fate
time falls away,
but these small hours,
these small hours still remain

It's true...the hardest part is over. Making this decision was actually the hardest part. During my run yesterday I was trying to explain to a running friend that I've learned there seem to be three camps when it comes to this whole surgery for UC thing.

Camp 1 are the folks who decide to opt for surgery (sort of) on their own time table. They may or may not feel like they've tried everything out there, but they are ready to take that step. The luxury of being in this camp is one typically has the opportunity to do a lot of research, meet with a surgeon and talk about options, and then decide what you want to do and when.

Camp 2 are people who end up with emergency surgery or just get so sick they can't wait. Sometimes they never even know the name of their disease until a surgeon is telling them they are going to have to take their colon. When I read their stories, it breaks my heart just a little bit. I can't imagine having something of this magnitude thrust upon you all at once like some horrible bitter dark pill you have to figure out how to choke down. How do you come back from that? The people that do it are some of the bravest out there, that much I'm sure of.

Camp 3 seems to be those who will fight and go to any lengths to save their colon. I was in this camp for a long time. Sometimes the people in this camp find themselves unexpectedly thrust into Camp 2. Other times they slowly journey in the direction of Camp 1. Some of them stay firmly planted where they are for the duration of their battle with this illness.

I spent some time during that run on Saturday thinking about these different places that all of the UC'ers I've come across are at on this spectrum. (Hey, it takes me a long time to cover nine miles!) The one thing I know for sure is that there is no right or wrong answer. We all have to be where we are and respect our journey as we manage our own illness. At the same time, we have to respect where other people are on their own road. Before this last flare, I would have never believed you if you would have told me I would be counting down the days until they were going to remove my colon. There is an almost seismic shift that happens, but when it does and you decide you're ready there really is no going back. I know the recovery is going to be slow and painful. I know adjusting to life with my ileostomy is going to be challenging and there will be set backs along the way. I know life without a colon is never going to be the same as life without UC could have been. I know all that, yet I can move forward with amazing clarity and conviction that I am doing the right thing here. I don't know how to explain the change that happens, but I promise you that when it does you know it. When you are ready, you just know. I don't really think anymore about whether or not I'm doing the right's more like, "Ok. Now how do I get through this?"

I spent this weekend thinking about a lot of little things. Sometimes they stabbed me right in the heart with a ferocity that just about took my breath away. Saturday morning's run was beyond amazing! I've come so far since starting back up in January. I felt strong and able. The weather was finally somewhat warm and the sun was shining. I had good music and good company. It was all I could ask for in a training run. When I let all that soak in, I got overwhelmed with the realization that it was the last training run before I do my personal half marathon next weekend. All that sunshine and strength I was feeling became this almost panic of needing to get off of that bike path before I lost it and started crying. I ended up completing my eighth mile much faster than I should have because I let myself take off and gave in to that feeling of wanting to escape and outrun those emotions. I paid for it during the ninth mile, but at that moment it was what I needed.

Speaking of what I needed, the running community continues to give back to me in amazing and unexpected ways. I spoke with a guy in my pace group who is training for a full marathon right now. I wanted to know what was on his mileage for next Saturday as I was still looking for someone to go 13.1 with me. He asked me why I was deviating from my training plan so I took a moment to explain what was going on. First, he was blown away by the idea of j-pouch surgery and that such a thing was even possible. Then, before even looking at his schedule he said, "Absolutely I'll do it. I would love to!" It turns out he was scheduled for 12 miles anyway, so this fits well with his plan. He was so supportive and wanting to help me and this is someone I've only known since January and only talked to briefly before and after our runs. I know I keep saying this, but there is something magic about runners as a community. I am so lucky to have all of these people in my life!

Some of those little things just made me smile and really boosted my spirits. I keep thinking about "these small hours, these little wonders" as I soak up as much as I can of my boys. I think that is going to be the single hardest part of this whole thing. I can stand the pain, I will rehab my body, but my heart just aches at the idea of being away from my sons while I am up there in the hospital. I know they will be fine and I know I will be fine, but that doesn't mean I have to like it or look forward it. I've been savoring everything I can about them, even the way my oldest boy makes one hell of a mess anytime he attempts to eat something. I keep smiling at my baby just to see him smile back and how it consumes and lights up his entire being. I can't get enough right now of their skin, their hair, the weight of their arms around my neck and how my oldest crawled into my bed early this morning and asked, "Can I sleep right next to you?"

I'm trying to stash it all away because these are the little wonders of which our lives are made. I am doing this for me, but I'm also doing it for them. I want to be there, and active and engaged, in every part of their lives as they grow and change. I want to show them how to overcome and triumph over the things that try to suck the life out of you when you aren't looking. I want them to see that you don't have to let something like this define you. When I scrape together every bit of my energy and tell my body that says, "Sorry, not today," to shut-up and I push myself for nine miles (or 13 next weekend!) it's partly for me but it's also a lot for them. There will come a day when they tell me they can't and I will be able to tell them all about this and about not giving up even when everything is stacked against you. The twists and turns of fate may hand you something you never asked for or wanted, but in the end it's up to you what you do with it, how you handle it, what you learn from it, and whether or not you let it crush you or use it to grow. I am going to grow. I don't know any other way.

Friday, March 11, 2011

When Mommy Is Sick

I am fortunate enough to be mom to two of the most beautiful and wonderful boys in the world. Ok, so maybe I'm a little biased in my view, but my boys are definitely the coolest thing in my part of the universe and I love being their mom. Sometimes its a challenge when I'm having a bad UC day. What I really hadn't thought about too much was how this illness effects them overall.

My youngest is not quite seven months old, so I don't think there is much impact for him at this point. He loves snuggling up in bed with Mommy, so even my bad days aren't too much of a burden on him. Probably the only negative experience for him is when I have to quickly stick him in his crib (especially if he was in the middle of a feeding!) so I can run into the bathroom. I've spent a few days like that with him crying in the crib and me trying to console him from the bathroom letting him know I'd be right there as soon as I could. Not fun, but probably not anything that will stick with him later on.

My oldest is almost four years old. He's seen me in pretty bad shape. I can remember when they wanted me to try an iron supplement and I reacted very poorly to it. The result was an extremely painful flare up that had me laying on the bathroom floor crying, sweating, and moaning until I finally puked up everything I'd eaten in the previous year (at least that's what it felt like). It was just my boy and I at home that morning, and I remember him being really scared. I tried to hold myself together as much as I could, but the pain was just too much. He was so sweet patting me and hugging me and telling me it was ok. When I finally threw up, he cheerfully told me I would feel better now. We spent the morning snuggled up on the couch watching cartoons and he just wanted to stay next to me the whole time.

I try not to let him know when I don't feel good because he worries and I don't want him to feel uncertainty. Sometimes it can't be helped though. There are plenty of mornings where his getting ready for school routine is conducted with me sitting on the toilet and him bringing me his clothes so I can help him dress, etc. He knows sometimes my belly hurts and I'm tired and need lots of naps. I've never really tried to explain UC to him though because I wasn't really sure how to do it.

A few days ago I started talking to him about Mommy going to the hospital. I wanted him to have time to digest this news and ask me any questions he might have. At first there was just a lot of "Are you going to the hospital now?" followed by my reminding him how many more days were left before I go. We would go over what is going to happen and that his grandma is going to come take care of him. I thought he was taking it all pretty well and he really didn't seem to have any questions. Then I picked him up from preschool yesterday.

The teacher handed me an orange paper with a disciplinary report written out on it. I knew immediately what the orange meant as it was all laid out in the parent handbook. I also remember reading about this process and feeling certain I'd never see one of those papers. Ha! Joke's on me! At any rate, apparently my sweet boy has been freaking out at school the last few days which culminated in him kicking, hitting, and screaming at a teacher in the nap room yesterday. This kind of thing is entirely not like him and as the director and I were discussing what on earth could have gotten into my typically mild mannered young man it struck me....he's more upset about this hospital thing than he is letting on. He just doesn't know how to talk about it. I made the decision to share the news of my upcoming surgery with them and they agreed it probably had a lot to do with it. I decided I needed to be more proactive in talking with him about what was happening and why.

It's always tricky trying to explain something like illness and surgery to a child of this age. I didn't want to make it sound too scary, but I wanted to be as honest as I could so he would understand. As I was trying to figure out the best way to go about about this, I remembered a book he got for Christmas called The Gas We Pass. There is a pretty good kid friendly drawing in this book that shows the digestive system and how food passes through it. I got the book out and showed him the drawing and pointed out the large intestine. I told him that part of my body was really sick and the doctor at the hospital was going to do an operation to take it out and make me better. He actually got kind of excited and said, "They are going to take the sick part out of your belly! Cool!" We talked about how right now with that sick part in there my belly hurts a lot and I have "mean poops" (his own terminology for diarrhea) a lot of the time. I told him when they took the sick part out it would fix that. I decided to take this opportunity to explain the ostomy bag to him, too. It took a couple of tries to convince him that I wasn't going to poop out of my bottom anymore, but into a bag on my belly. He actually thought it was hilarious that farts would come out into the bag, too. He wanted to know if we could pour the farts in a bottle to keep them! I told him that probably wouldn't work too well.

Then he looked up at me with those big brown eyes and asked me, "Mommy, what will the bag on your belly look like?" I had actually been waiting for this question and I asked him if he wanted to see a picture of one on the internet. He said he did. I went to Facebook, pulled up the Uncover Ostomy photo page, and showed him some pictures of women with their ostomy bags. I steered clear of the post-op pics there and focused on the others. There are some great pictures there of people looking proud and happy with their ostomies. He actually said it was kind of neat and we talked about it some more. I pointed to the area on my belly where mine will likely be. At the end of our talk I told him he can ask me any questions he wants about the hospital and my operation and we will talk about it. I also promised him that I will say goodbye to him before I leave for the hospital. I think he was nervous that he would go to school and come home and I would be gone. I am hoping all of these things help settle this in his mind somewhat, but I'm prepared to keep repeating and explaining if I have to.

My husband and I talked about whether or not I would show my older son the stoma. Right now I'm not showing him stoma pictures because I don't want him to be frightened by how they look. I plan to wear a solid bag (versus clear) so he won't be seeing it in the normal course of things. I kept going back and forth over whether I should show it to him once I'm home from the hospital. It's not that I want to hide it, but I'm not sure it's necessary either. Finally my husband said, "Well, you wouldn't go out of your way to show him your butt, right?" That made sense to me. My current thoughts on this are that I am not going to make a special effort to show him the stoma but, if he is around when I am changing the bag or something and wants to see it, I will let him look and answer his questions. I think that's a good place to be right now.

Wednesday, March 9, 2011

The Snail

Something kind of cool happened today. I have all these little items I keep trying to sort out before this whole surgery thing goes down. I guess it's my way of trying to feel like I can be a little bit in control of the situation. Some of them are necessary but not fun things, like finally meeting with the lawyer to get a will made. Some of them are (slightly) less necessary but more fun things like trying to figure out how I will launch my running comeback. I know people with ostomies are out there living active lives and I plan to be one of those people as soon as I'm healed up enough to get back out there. I've been thinking about logistics around running and things like do I want to get the Stealth Belt? How quickly will I be able to get back to my current fitness level? And how will I meet the new hydration demands of my altered digestive system? I'm not sure about the answer to the first two items, but I've been researching pretty intensely on the last one.

When you don't have a colon, your body loses a lot of it's natural ability to absorb water and electrolytes. This means people with ileostomies have to be very careful about hydration, especially when exercising. I also keep reading that a lot of ostomates have trouble consuming foods and drinks that contain high levels of sugar. This left me concerned about how I would stay hydrated enough for running without consuming mass amounts of Gatorade and therefore mass amounts of sugar. I did happen upon Powerade Zero (which I'd somehow forgotten entirely about) and I plan to give that a go. A new discovery for me though was this stuff called nuun. Basically, they are little tablets that you drop into a reusable water bottle. They fizz up to dissolve and then become a non-carbonated, sugar free, electrolyte and hydration drink.

I will admit to being fascinated by their information about the amounts and types of electrolytes they include in their formulations. It sounded like good stuff and I wanted to try it out. I happened upon their Facebook page and they had a post up where they invited people to leave a comment and they would pick winners to receive a free tube of some new flavors they are rolling out. I left a comment letting them know I was interested in trying nuun to help with hydration when running with my ileostomy, and they picked me as one of the winners to try the new flavors. I'm pretty psyched to get to try this stuff out for free. They are sending me the new fruit punch flavor. Once I try it, I will be sure to report back on what I thought. It will be awhile before I'll get to use any on the run, but I'm sure it will also be good for general hydration needs after surgery. I also love that they are a small start-up type company. I love being able to support that type of business!

On a running related note, I was really struggling with getting motivated for my run today. I knew I needed to do it, but my head was just not in the right place. I got all caught up in this feeling of wondering why I should even bother. I mean, I'm about to have this huge layoff. I have no idea how long it will be until I can run again. When I do start back up, it's going to take rebuilding all over again. Once I really get solidly going again, it will be time for Step 2 surgery and then I'll just go through the roller coaster all over again. I was feeling pretty sorry for myself. I shared my pity party with some of my running friends online, and I was reminded of my race report following completion of the Twisted Ankle trail half marathon in 2009.

I entered that race entirely untrained, starting a UC flare, and coming off of a nasty bout of bronchitis. I really had no business doing it at all, but I had been looking forward to it for so long that I was going to be there if it killed me. It never came to that, but I did struggle mightily. It was the most physically difficult race I've ever done. There is one monstrosity of a hill affectionately named "Becky's Bluff" after the race director. That thing is a beast! (the hill, not Becky...she is quite lovely) It's pretty much straight up forever and you have to grab with your hands and climb and all sorts of billy goat like antics just to get up the damn thing. Becky's Bluff sucked what little bit of air I had left right out of my wheezing lungs. My heart rate was hammering, I was light headed, and I seriously thought I would have a DNF for the first time in my racing life. Just as I was contemplating going back down and asking someone to get me off of that mountain, I happened to look down and see a snail right between my shoes. He was just inching along up the hill like everything was cool. I decided if that little snail could get up that hill, then surely I could do the same and I got moving again. It wasn't easy, but I did it.

That snail propelled me through the remainder of the extremely difficult course that day. I'd nearly forgotten about him until today when one of my running buddies reminded me and challenged me to be the snail today. That was exactly the kick in the pants I needed and I'm happy to report it resulted in 3.5 miles at a really speedy pace for where I am in my running right now. I felt so great afterward and was grateful to my friend for providing that nudge right when I needed it.

So why bother when I know I'm going to have to start over (and over, and over by the time this is all said and done)? Because running is what I do. It's brought so many beautiful people and experiences into my life that I can never repay wherever it is they all come from. Because on Saturday my training group will be there waiting for me. Because there are only six more runs on the schedule before I head up to Cleveland and I deserve to savor every single one. Because I don't know any other way than to forge ahead despite all obstacles. Because I am the snail!

P.S. For those who are wondering, I actually ended up losing 0.8 pounds for the week! I'm not sure how that happened, but I'll take it.

Tuesday, March 8, 2011

Food Issues

Anyone who knows me knows that I have struggled with my weight for a long time. My UC typically has not caused any weight loss. This is a good thing, but it also means I have to work hard to lose weight just like non-UC'ers. Prior to my second pregnancy I joined Weight Watchers and lost about 20 pounds. I got pregnant and stopped going to meetings, but I was determined I would start back up soon after my baby was born and seriously get to work on getting to a healthy weight. My youngest will be seven months old next week and I am happy to report I did what I said I would and have lost 50 pounds since he was born. To get to my goal weight, I need to lose 50 more.

Now there are a lot of sides to this thing: wanting to look better, feel and be healthier, run faster, be stronger, and buy cute clothes. Since I am now on the path to a j-pouch I have another motivation: Dr. Lavery will not do my Step 2 and 3 surgeries until I get this weight off. That's huge! The ileostomy is going to get me healthy and I am grateful for that opportunity. The pouch though is the thing that will restore my continence and make my life as "normal" as it's ever going to be thanks to this stupid illness. I need to get in the required shape to make those additional surgeries happen. It's extremely important to me.

So tell me then friends why it is I've been completely off the rails food-wise for the last five days or so? I've been trying to get to the bottom of that all day today so that I can put the brakes on and get back to my regularly scheduled programming. I think it boils down to two things: 1) I am incredibly stressed and anxious about the surgery and 2) I am worried about food restrictions with the ostomy.

Yes, I am a bit freaked out about the surgery coming up. Do I feel like it's the right thing to do? Absolutely. I just dropped my Prednisone back down to 30 mg and I'm already waking up with left side abdominal pain. I am confident in my position against trying biologic drugs and that I've picked the best facility and surgical team I could have. Still, this is huge. Nobody can sit back and think, "Ok, so they are going to take out a third of my digestive system. Sure, no problem!" I know I will get through it, but I also know when I look back on the most significant days in my life it's going to be things like the day I married my husband, the days my sons were born, and the day they took out my diseased colon. I've tried to give myself a little leeway to freak out, but I need to find a better way to channel that stress. I am not supposed to be using food as an emotional crutch or coping mechanism anymore. I know better.

I am also worried about food restrictions with the ileostomy and how limited my diet will be. There seem to be two camps: those who eat pretty much whatever they want, and those who don't seem to be able to eat much at all without having problems. I am hoping I will end up in the first group. I've never had a problem with strictures or obstructions, so I'm hoping that will carry over to life with a stoma. I'm trying to just have a wait and see attitude and be optimistic, but part of me looks at foods I enjoy and thinks, "When will I be able to have this again?" For someone with a history of dieting, that thought alone is enough to end up face down in a pint of Ben and Jerry's. I'm not there yet, but the last few days have not been what they should in terms of what I've been eating. It's time to stop and be reasonable. Adding pounds I don't need before surgery is not going to help my recovery or my progress toward Step 2. Time to get a grip, girl!

I have my Weight Watchers weigh-in this evening. I'm fully expecting a gain. I will take my lumps at the scale and then get right back on the horse for a new week. All day today I've been giving myself a little pep talk about how there are so many things outside of my control in this situation, but the one thing I have complete and total control over are my choices about what food I am going to consume and what exercise I am going to do. Those are things I can do my very best at to help these next two weeks go by smoothly. I'm going to do it!

Monday, March 7, 2011

T Minus 14 Days

I had my consult at Cleveland Clinic with Dr. Lavery on Wednesday, March 2nd. The following is taken from a post I made over at Healing Well the next day:

Well, today was a lot to digest! I had my consult this afternoon with Dr. Lavery. There was also a doctor who "works for him" in attendance and an additional doctor who was visiting from San Diego apparently learning stuff from them and checking out the facility. I was greeted with a surprise "peek at the bottom" which I wasn't expecting. He did a digital exam and then put some sort of scope in there so they could evaluate things. Turns out after three weeks of Prednisone @ 40 mg and 1 week of Rowasa enemas I still have a decent amount of inflammation going and contact bleeding that they were able to observe. Not very encouraging.

Dr. L did think surgery would be a good course of action for me if I don't want to try the biologics, etc. We had a good discussion about my rationale behind that and he seemed satisfied that I've adequately thought it through. What I wasn't prepared for was hearing that he would only consider j-pouch for me as a three step process. Once he went into his reasoning though, I felt comfortable with why and I understand it. There are two concerns: first is my use of Prednisone and worry about organ softness, etc. The second is my current weight. I had a baby in August and have been going to Weight Watchers since then and having great success (I've lost 50 pounds) but I still need to lose another 40-50 pounds to be at an ideal or healthy weight for my height. He said he would not be comfortable constructing the pouch while I am carrying this much excess weight. That seems reasonable.

So what he is suggesting is to remove the colon and have the ileo for six months or so (or longer if I want to) to let my body recover from steroid use and also let me get to my goal weight. Then do the step 2 for construction, heal up from that, and then step 3 for takedown. I asked about my thoughts on waiting until October (which should give me enough time to resolve the weight issue) but given the current state of things that would likely mean 7 more months of steroids which isn't going to resolve that concern and is only going to be harder on my body. So, either way I'm looking at 3 steps unless I just want to go straight to a permanent ostomy. I'm really wanting to give the pouch a shot though.

I have a lot to wrap my head around at this point. I'm 2/3 of the way into training for a half marathon that I want to run in mid-May. I really would like to see that through. I feel like psychologically I need it. I think I would be ok at that point getting the first step done. I would think if I do that in mid-May, then I should be fine to go on our beach vacation over the 4th of July....what do you guys think? Tacking 6'ish months onto that would also put me back at the timeline I was originally thinking of for fall and I could do step 2 then. The major wrinkle is with my youngest son who is 6 months right now and nursing. He'll be 9 months then and I had hoped to nurse him until 1 year old, but I don't think I can manage that post-surgery with the recovery, too. It just seems like too much. I know it wouldn't be the end of the world to switch him to formula for those last few months, but there is an emotional acceptance thing there that needs to happen on my part. My husband and I are in the process of discussing and trying to see what we're comfortable with. This is really difficult. In addition, it looks like a minimum of 9 months (maybe more?) with the ostomy which is more than I was mentally prepared for. I have a feeling though that once you make the initial adjustment to it, it's really not a big deal if it's 3 months or 6 or 9.

The day after I made this post, I started feeling light headed and really tired after lunch. I dug out my glucose monitor (leftover from my pregnancy when I had gestational diabetes) and found my sugar was 201 an hour after eating. Way too high. Coupling this with the high blood pressure reading I got in the surgeon's office the day before, and it was really easy to see the writing on the wall: Prednisone is ruining my health. My husband and I talked things over and we decided not to wait until May for surgery. I made some phone calls to Dr. Lavery's office and am now scheduled for Step 1 of my three step j-pouch surgery on Tuesday, March 22nd. I will check in at Cleveland Clinic on Monday the 21st for pre-op and my meeting with the stoma nurse.

It's really difficult to explain how I feel right now. My emotions are in over-drive and I find myself randomly crying over stupid things. Part of this is still no doubt steroid related, but it's also just a lot to take in. The support boards I've been participating in online help tremendously. Just reading about other people's experiences and being able to ask them questions helps with feeling like you aren't the only one going through this. I've also been spending time looking at pictures of stomas, post-op pictures, and videos/tutorials of people changing their appliances. The more I do this, the more normal it starts to feel and the less freaked out I am about life with the ileostomy. At this point I am confident I will be ok once I get through the initial surgical recovery. I know there will be a learning curve as to figuring out which appliance works best for me, but I'm ready to take that challenge on.

There are a couple of things I had to work out. The first involves my almost seven month old son who is still nursing. I have enough milk in the freezer to last him about five days. I will be working to add to that up until it's time to go to the hospital. While my mother-in-law is caring for him, we are prepared to supplement with formula if we need to. I am going to attempt to take my pump to the hospital and pump enough during my stay to keep my supply alive. I'm not going to try to bring any of the milk home because between it being pumped in a hospital and all the drugs I'll be on, I would rather just throw it out. The goal is just to keep milk production going until I get home again. Once I am home, we will use a combination of pumping and bottle feeding and having my husband hold and position the baby so I can nurse. We feel like I'll be able to do some nursing in bed and also in a recliner with the Boppy pillow to protect my incision and my husband there to help position and support the baby. I've already given myself permission in advance to stop at any point if it's just too much. I also told my husband he will probably actually have to do the pumping the first day as I'll likely be too out of it. I at least to feel like I tried and we'll see how it works out.

The second item was missing out on my half marathon in May. This was as difficult emotionally, if not more so, than the nursing situation. I've poured a lot of myself in training these past few months. I've also been sick so it's meant scraping together every last bit of extra energy I have somedays just to get through the workouts. At the same time, running has kept me sane, helped me cope, and reminded me that I am strong and capable despite what this disease has tried to do to me. I had to force myself to realize that my long term health was at stake and there will be other races once I recover. I don't want my training to be in vain though, so on Saturday the 19th I am running 13.1 miles as my own personal half marathon. There won't be the normal race day excitement or a cool t-shirt or any of that...but I am doing this for me so I guess I don't need all of that stuff. I'm looking forward to it a lot and I think it will help me to close the door on this chapter of my life that has been so defined by my illness. I'm so ready to move on to the next thing! I am setting a goal for myself to enroll in the next season with my training group and join the walkers to get ready and walk the half marathon in Columbus this October. I've also set my sights on running my traditional 5 mile Turkey Trot on Thanksgiving Day. Having these two goals to work toward will really help me have something to focus on during recovery. I'm excited to see how I do.

Today I got to refill my meds for the last time. I will be so happy to get rid of all of these pills and their side effects! I would love it if my local pharmacist forgot what I look like. I had a chat with my GI today and he reminded me that when this is all said and done I won't need him anymore. All of these great things I have to look forward to by getting rid of my diseased colon!