Friday, September 9, 2011

Step 2 is on the way!

I had my follow up with Dr. Lavery on Wednesday and things went really well. It was kind of funny, but his nurse Marlene told me that she didn't even recognize me because I have lost so much weight. That felt pretty good! I had to do some labs to make sure I'm not anemic or malnourished or anything. Those all came back great. I also had to do a manometery test. It's a test to make sure your sphincter muscles are functioning properly so that you will be able to "hold it" when you get the urge to go to the bathroom. They also check to make sure that you can feel when you need to go (that there isn't nerve damage, etc.). Yes, the test is as fun and awesome as it sounds. Happily, I passed it so I'm ready to go.

On October 16th I will run my half marathon (more about that in a minute!). On October 19th I will go up to Cleveland for Pre-Op Day (a.k.a The Day of One Thousand Appointments) and on the 20th I will have my Step 2 surgery for construction of my j-pouch. Back in March it seemed like this day would never get here and now it's just over a month away. Wow. This has been quite the amazing journey.

Another funny thing happened during my visit. Dr. Lavery was asking me about my weight loss and I told him I'd been following a healthy diet and running. He wanted to know how much I run each week and then he was asking about the half marathon. At some point, I realized we weren't having a medical conversation anymore, it was more of that blatant curiosity and disbelief that a non-runner has when we runners start talking about our training and races. He wanted to know if I was competitive and I told him only with my myself. Then he wanted to know how long it would take me to run the half. I told him I hope to finish between 2:20 and 2:30 which made him laugh and state, "That's a damn long time to run!" Yes, yes it is! Oh well, I'm one of those weird people who think that's a fun time so, go me!

You might notice that I said between 2:20 and 2:30 up there and you might be thinking to yourself, "Oh really now?" Yes, really. I'm all psyched up after the quarter marathon from last weekend. 1:11:57!!! I was really hoping to go 1:15 and see how it felt. Instead, I smashed that all apart. While I know I ran well and didn't leave anything on the table, I know I can go just a little harder on race day when I know I don't have to continue training in the week to follow. I'm very excited. I can't wait to see what I can do. :-)

Oh, I did have a leak this morning with my beloved new Coloplast system. :sigh: Another shower at 4:30 in the morning. I don't know how that is when it happens, but at least it beats being out and about or busy with the kids when it strikes. I've come to the conclusion that it doesn't matter what appliance I am using if it's a matter of that secondary opening striking. Not much I can do about that except be a little more careful about what I'm eating (got a little carried away with raw veggies yesterday!) and drink, drink, drink to keep things moving along and thinned down. It was kind of weird because it didn't even phase me or upset me or anything. I just kept thinking about how soon all of this is going to be over and I got myself back to bed as quickly as I could.

Thursday, September 1, 2011

And the Winner Is....

Looks like I'll be going with the Coloplast 2 piece SenSura Flex appliance. This system is a 2 piece with an adhesive coupling....the barrier sticks to my skin and then the pouch sticks to the barrier. I was going to give the Convatec system another go, but the second set of samples they sent me were also flat so that was a bust. This Coloplast system arrived in the meantime, so I decided to give it a try. I love it! Here are my favorite things about this system:

1) The barrier is cloth free, yet extremely flexible. There is nothing on it that will get wet and stay wet. This is a huge plus! Even though I've been wearing Sure Seals, there was still a little gap in between the seal and the barrier and the cloth covering on my Hollister barrier would sometimes get wet underneath the Sure Seal and seemed to take forever to dry.

2) The barrier is almost transparent. It's really kind of a skin tone color, but it's very translucent. I can see the line of my incision scar through it where it covers it. I like this because it would be very easy to tell if there was a leak starting underneath there before it ever got close to the edges of the barrier. With my Hollister system, I would find myself sometimes staring at the edges trying to decide if I could detect a dark spot or not. This is not an issue with this new system.

3) Though it's an adhesive system, there are belt tabs to attach an ostomy belt. I was very happy to see this! Even better, the Hollister belts that I already have work with this new system.

4) The pouch was super easy to apply to the base. It's basically a peel and stick type thing, though you do have to be careful to line it up properly and make sure you roll it on from the bottom so it's smooth and there aren't any creases or bubbles. I was worried this would be tough to get right, but I'm two for two so far with minimal effort. The back of the base plate is clear, so you can actually see through and know if anything is getting under the pouch and compromising that seal. It is normal to see a little bit after about eight hours and it can kind of very slowly creep outward. It was recommended to change the pouch when this "creeping" got to about the 2/3 mark, but I was ready to change well before that happened. I think mine wasn't even quite halfway when I took the first one of at four days.

5) Flexibility! Because there is no solid mechanical coupling, this whole system moves and bends with my body. It's also super light weight and low profile. It doesn't show through my clothes at all.

6) I love the opening on this pouch. It is wide so it's easy to clean and the way it folds up seems very secure. You can also tuck the end up inside the covering and there is a little velcro to hold it there. This means the bag is no longer touching the top of my leg which I enjoy---especially when running!

7) So easy to remove! There is a little tab at the top of the barrier that doesn't stick to your skin so it gives you a place to get things started when you are trying to remove the barrier. This is a huge help as I sometimes had to really poke and prod at the edges of my Hollister barrier to get it to lift up and then my skin would get red in places.

I think that's it! :-) The one draw back is that my Sure Seals don't quite fit around the base plate of the flange. I've worked around this by cutting them in half and fitting each piece on separately. That seems to work pretty well and the extra security of the Sure Seals is worth the extra effort. Aside from that, I love this new system and I'm glad I took a chance at trying some new things out. I've run about 15 miles in these and no issues there either.

Speaking of running, I am really proud of myself for running 74 miles in the month of August. When I was going into the hospital in March, I had no expectations of being where I am right now. I wondered how I was even going to make running with my ostomy work, let alone imagining I might be training really well at this point. I've run almost 200 miles with my ostomy and it hasn't caused me any trouble at all. In fact, my new level of health has made my running that much easier and better. I remain incredibly grateful that this was an option for getting rid of my UC.

A couple of exciting things are coming up! Tomorrow night I am fortunate enough to have the opportunity to enjoy dinner with Kathrine Switzer. The local running store that sponsors my marathon training group is hosting her for a book signing this weekend. On their Facebook page they asked for postings about overcoming adversity through running and my story was one of the top two based on "Likes" left on the posts. As a result, I am joining some of the running store staff, as well as the top vote recipient, tomorrow night to have dinner with Kathrine. I am incredibly excited to meet a woman who has achieved so much in running and increasing opportunity for women in sports. I am also honored to be able to share a little bit of my story with her and see it as another great chance to spread IBD and ostomy awareness.

On Wednesday I will again make the drive to Cleveland to meet up with Dr. Lavery and discuss Step 2 of my surgery process. As of two days ago, I was within two pounds of the weight loss he wanted to see before we would go ahead with the next step. I am confident I will be getting the green light to move forward. I am hoping we will be able to schedule surgery for the week following the Columbus half marathon. If not, I will take the first available appointment after that. It's a little bit exciting, and scary, to think about going back into the hospital. I'm excited about it because it's one more step toward my goal of getting my j-pouch completed. I'm a little scared because I know they'll be opening me up again and this surgery is a little more intensive than what the first one was. I do have a lot of confidence in my body's ability to bounce back after seeing how well I recovered from the first surgery. I also feel a lot of peace around knowing I will be back with the same nursing staff who took such amazing care of me during my last stay at Cleveland Clinic. I have absolute faith in the abilities of my surgeon and I know I will be just fine. I am not looking forward to starting over with a new stoma. Mostly because it will mean back to square one with the soft diet and all of that. Oh well, I made it through all of that once and I can do it again, right? Depending on how long he wants me to wait in between Steps 2 and 3, this could actually all be over with before the end of the year. Kind of mind boggling when I think of it that way.

Speaking of mind boggling, I try really hard not to think about the entirety of the last 12 months or so of my life all at once. It's really overwhelming when I allow myself to do so. In the last 12-13 months I've: had a baby, had a car accident where I totaled my car, had a huge UC flare up which would not respond to steroids, trained for a run a half marathon while battling that flare, had my colon removed, recovered from surgery, trained for a second half marathon (which I will run in about 6 weeks!), and made the lifestyle changes needed to lose 75 pounds. All while somehow keeping what remains of my sanity and trying to be the best wife and mother I can be. So last night when I checked the training log and saw those 74 miles for the month, I took a moment to think about all of this and I will admit I cried a little. It was just really emotional as I reflected on everything it's taken to get here, and even more so when I think of how far I have yet to go. It's funny though because I am more convinced than ever that there isn't anything that I can't do. I have at the core of my being an undeniable strength and endurance that can never be taken away from me. I know that now. I've seen it, touched it, and tapped into it when I really needed it the most. It's real, tangible, and hard as a diamond. My life will never be the same now that I have this knowledge, and that may be the thing I am most grateful for above all the rest.