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.
Friday, September 9, 2011
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.
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.
Sunday, August 21, 2011
A Couple of Experiments
My first batch of appliance samples came in the mail last week. These were from Convatec. They sent me four each of two different systems. One was a one piece system which I can no longer remember the name of. The other was their two piece Esteem Synergy appliance. I was interested in giving the Synergy a try because it's an adhesive coupling two piece versus the mechanical coupling I am using now. It's way more flexible and has a much lower profile on the body. I somehow mistakenly ordered the flat skin barrier instead of convex (which I normally use). I decided to go ahead and give a try though just to see how it felt on, how easy it was to apply, and if I had any issues with the adhesive.
The skin barrier was really easy to apply. It's a tape collar where my current system is the hard neoprene type stuff all the way to the edges. The backing is in two separate sections. You peel the first off to apply the central "hard" part of the barrier and then peel the second section off to smooth down the tape edges. That was pretty nice. Once I had the wafer on, I really liked how small it was compared to my Hollister one and how it felt (not stiff at all!). I've heard some people have trouble applying the pouch to the "landing zone" on the wafer, but mine went on with no trouble at all. I really, really, really like the velcro closure on this pouch. There are two separate times that you velcro it so it feels really secure. The whole system felt really lightweight and it was basically invisible under my clothes. Once I had it on though, I pretty much knew it would fail in short order. No flaw of the appliance, but it was the convexity thing. My stomach is still pretty soft, so I really need that convexity to press the area around my stoma down and keep the opening inside the pouch where it belongs. Also, there is no way to use an ostomy belt with this system, so I didn't have that for a backup either. I'm curious as to how running will be without an ostomy belt, but this change only lasted about 9 hours and I didn't get to test it out on a run. The leak did answer one question I had about the tape collar. When I applied it, it seemed like the tape part was pretty porous and I was wondering if liquid would come right through it if there was a leak. This did not happen at all, so that was a good bit of information.
Because the one piece I got from Convatec was also flat, I decided not to test it out and put my regular Hollister setup back on. I did call Convatec and request the two piece system in convex and it is on its way to me. I will let you know how it goes once I get a chance to try it out. The extra samples I can't use are going to another ostomy person that needs them, so I'm happy not to be letting them go to waste.
My other grand experiment is diet related. I've kicked around the idea of going vegetarian for awhile now. I was hesitant to go for it with the ostomy because I didn't know if I could handle the additional fiber, etc. without blockages or other trouble. I finally decided to just do it and see how things go. On Tuesday it will be a week and I am happy to say I see no ill effects at this point. I am still keeping raw fruits and veggies to a minimum, but I can handle a decent amount of the cooked veggies that I feel safe with as well as beans, lentils and rice. I feel great, eating like this seems to be fueling my running well, and it's helping me to take off those last couple of pounds I need to shake off before I see Dr. L here in a few weeks. Win, win, win if you ask me. I've drawn a lot of inspiration from Matt Frazier and company over at No Meat Athlete. It was really reassuring to me to see such solid examples of vegetarianism being compatible with endurance sports. I've also found a ton of great recipes through Matt's site that have allowed me to eat real whole foods versus lots of packaged and processed "meat substitutes" which is a very good thing. I would say I'm about 95% right now as I'm still using up a few things that I already have around the house (like some frozen dinners, etc.). As I'm buying new stuff though, I'm doing it with a plan toward vegetarian meals and snacks. It's working out well so far.
Oh, one last fun note. I've now run nine miles with Pedro. Pretty awesome. Not a blip of trouble along the way either. I was a little worried on this last run because I overslept and I didn't get a chance to eat my normal food and wait for that second morning empty that always seems to crop up about 45 minutes after I get up. Everything worked out just fine though. I think once I start running, the diversion of blood flow away from the digestive system slows everything down enough that it's not a problem. I always have an empty, or nearly empty, bag even after running for over 90 minutes. Whatever is making that magic happen, I'll take it. I'm feeling confident now that I will be able to run the entire half marathon without needing to empty. Even if I do, there are port-a-potties and I'll carry some wet wipes and stuff so it will be fine. Would be really nice if I didn't have to worry about it at all though!
The skin barrier was really easy to apply. It's a tape collar where my current system is the hard neoprene type stuff all the way to the edges. The backing is in two separate sections. You peel the first off to apply the central "hard" part of the barrier and then peel the second section off to smooth down the tape edges. That was pretty nice. Once I had the wafer on, I really liked how small it was compared to my Hollister one and how it felt (not stiff at all!). I've heard some people have trouble applying the pouch to the "landing zone" on the wafer, but mine went on with no trouble at all. I really, really, really like the velcro closure on this pouch. There are two separate times that you velcro it so it feels really secure. The whole system felt really lightweight and it was basically invisible under my clothes. Once I had it on though, I pretty much knew it would fail in short order. No flaw of the appliance, but it was the convexity thing. My stomach is still pretty soft, so I really need that convexity to press the area around my stoma down and keep the opening inside the pouch where it belongs. Also, there is no way to use an ostomy belt with this system, so I didn't have that for a backup either. I'm curious as to how running will be without an ostomy belt, but this change only lasted about 9 hours and I didn't get to test it out on a run. The leak did answer one question I had about the tape collar. When I applied it, it seemed like the tape part was pretty porous and I was wondering if liquid would come right through it if there was a leak. This did not happen at all, so that was a good bit of information.
Because the one piece I got from Convatec was also flat, I decided not to test it out and put my regular Hollister setup back on. I did call Convatec and request the two piece system in convex and it is on its way to me. I will let you know how it goes once I get a chance to try it out. The extra samples I can't use are going to another ostomy person that needs them, so I'm happy not to be letting them go to waste.
My other grand experiment is diet related. I've kicked around the idea of going vegetarian for awhile now. I was hesitant to go for it with the ostomy because I didn't know if I could handle the additional fiber, etc. without blockages or other trouble. I finally decided to just do it and see how things go. On Tuesday it will be a week and I am happy to say I see no ill effects at this point. I am still keeping raw fruits and veggies to a minimum, but I can handle a decent amount of the cooked veggies that I feel safe with as well as beans, lentils and rice. I feel great, eating like this seems to be fueling my running well, and it's helping me to take off those last couple of pounds I need to shake off before I see Dr. L here in a few weeks. Win, win, win if you ask me. I've drawn a lot of inspiration from Matt Frazier and company over at No Meat Athlete. It was really reassuring to me to see such solid examples of vegetarianism being compatible with endurance sports. I've also found a ton of great recipes through Matt's site that have allowed me to eat real whole foods versus lots of packaged and processed "meat substitutes" which is a very good thing. I would say I'm about 95% right now as I'm still using up a few things that I already have around the house (like some frozen dinners, etc.). As I'm buying new stuff though, I'm doing it with a plan toward vegetarian meals and snacks. It's working out well so far.
Oh, one last fun note. I've now run nine miles with Pedro. Pretty awesome. Not a blip of trouble along the way either. I was a little worried on this last run because I overslept and I didn't get a chance to eat my normal food and wait for that second morning empty that always seems to crop up about 45 minutes after I get up. Everything worked out just fine though. I think once I start running, the diversion of blood flow away from the digestive system slows everything down enough that it's not a problem. I always have an empty, or nearly empty, bag even after running for over 90 minutes. Whatever is making that magic happen, I'll take it. I'm feeling confident now that I will be able to run the entire half marathon without needing to empty. Even if I do, there are port-a-potties and I'll carry some wet wipes and stuff so it will be fine. Would be really nice if I didn't have to worry about it at all though!
Thursday, August 11, 2011
Fall Apart, Pull It Together
Yes, sometimes I fall apart, too. I try to keep an encouraging message when it comes to this blog, because that's who I try to be in general. In truth though, sometimes I fall apart and things aren't awesome. I'm not immune to it anymore than the next person.
Thus I found myself staring at a leaking wafer at 4:30 this morning and sobbing so hard I woke up my husband. I've had leaks before, and I can usually take them in stride. This, however, would be the third wafer I would apply in less than 12 hours and I just couldn't take it anymore. My negative self-talk was downright vicious in that moment. I felt less than human. Who can't control even their most basic bodily functions? How did I think I was going to make it through the next how ever many months until my surgeries are all complete and I don't have to do this anymore? What if something happens and I can't get my j-pouch or....even worse...I get it and it doesn't work out and I have to go back to this? How did I think I was going to get through these progressively longer training runs, and ultimately a half marathon, when I can't even keep a wafer for more than a few hours?
These were the horrible thoughts swirling through my mind as I prepped everything I would need for one more appliance change. The first change (yesterday evening) was a scheduled change out for a new appliance. Everything was unremarkable. My skin looked good, stoma was cooperative, easy peasy. An hour or so later we were out eating dinner and something just didn't feel right. I left for the bathroom sure I would find a leak. Nothing. Still, things just felt strange so I popped open the top of my pouch coupling and then I could see why. The top third of my barrier paste ring was completely inside the pouch. This meant a leak was inevitable, but I felt ok finishing dinner and taking care of things at home. Once home, I took the wafer off and could see that it might have lasted another hour or so, but the seal was quickly being compromised. I was glad I caught it as we were taking the kids to an outdoor movie and would be out of the house for a few hours. I would have ended up with a public restroom change which I've been able to avoid so far. New system in place, I went on about my business. Everything seemed fine with this second change. I guess that's part of the reason I felt so defeated when I woke up at 4:30, went in to empty, and found the leak.
It ultimately turned out that yesterday was the perfect storm culmination of a couple of issues I've been dealing with over the last few weeks. The first is that I've lost about 25 pounds since my stoma was placed. Originally, the location was selected because it was on the "summit" of the "hill" that my lower belly formed. Now that I've lost weight, the size of the belly hill has shrunk and the stoma is no longer perched atop that summit. It is now sort of above it and toward the new place where my skin wants to fold in (still working on shrinking that hill, so yes there is still a fold....just a smaller one!). One thing I've noticed in the last couple of weeks is that the edge of the stiff collar formed by the mechanical coupling of my wafer (the plastic ring the pouch snaps onto) seems to poke beyond the edge of where my belly wants to fold in. I'm thinking that when I move around a lot and get into positions where I'm more "folded up" than usual (like sitting cross legged on the ground at an outdoor movie) that firmer area can't bend with my new curvature and it ends up pulling away a bit. I think this has caused some of my leaks. Another issue is that my digestion has really thickened and slowed down. This is good in some ways because it mean less emptying, lower dehydration risk, etc. It is also bad in some ways because really thick output is hard for the stoma to pass. I seem to be more and more susceptible to partial blockages all the time. This lands me in that situation I've mentioned in the past where output is forced past the stoma and into the "downstream" piece of intestine that forms my loop ileo. Since I'm not hooked up inside, there is nowhere for this stuff to go until it collects a bit and eventually gets squeezed back out through the tiny secondary opening at the base of my stoma. This almost always results in a seal loss because what is coming out is thick and typically has nowhere to go but under the wafer edge. I try to leave a little space at the side where the opening is, but a lot of times the paste ring will swell up and block it off anyway.
Early this morning I was feeling really defeated. At one point I asked my husband if he would be able to get the time off of work if I moved my appointment up and tried to have surgery in early September instead of mid-October. He was supportive, but he seemed to know that wasn't the best thing for me. It would mean giving up another half marathon after I've been training so hard and doing so well. I guess my thinking was that moving up Step 2 would move up Step 3 and get the whole thing over faster. I just wanted to be done. I laid there in bed and thought and thought about things. I don't think I went back to sleep at all. I finally decided I wasn't going to let this set back beat me. I know I need to drink more fluids with my meals and throughout the day to cut back on the thickening issue. I can do that, it's an easy fix. I also went online today and researched some of the other appliances that are out there. I'm still using the same one I came home from the hospital with even though my body has drastically changed. It's no wonder I'm having problems! I requested some samples of a few systems I think might work better and I'll give them a try once they get here. I feel like I'm back on track now and I can manage this. I will move forward according to my timeline. I will train for and run my race. I can do this.
Thus I found myself staring at a leaking wafer at 4:30 this morning and sobbing so hard I woke up my husband. I've had leaks before, and I can usually take them in stride. This, however, would be the third wafer I would apply in less than 12 hours and I just couldn't take it anymore. My negative self-talk was downright vicious in that moment. I felt less than human. Who can't control even their most basic bodily functions? How did I think I was going to make it through the next how ever many months until my surgeries are all complete and I don't have to do this anymore? What if something happens and I can't get my j-pouch or....even worse...I get it and it doesn't work out and I have to go back to this? How did I think I was going to get through these progressively longer training runs, and ultimately a half marathon, when I can't even keep a wafer for more than a few hours?
These were the horrible thoughts swirling through my mind as I prepped everything I would need for one more appliance change. The first change (yesterday evening) was a scheduled change out for a new appliance. Everything was unremarkable. My skin looked good, stoma was cooperative, easy peasy. An hour or so later we were out eating dinner and something just didn't feel right. I left for the bathroom sure I would find a leak. Nothing. Still, things just felt strange so I popped open the top of my pouch coupling and then I could see why. The top third of my barrier paste ring was completely inside the pouch. This meant a leak was inevitable, but I felt ok finishing dinner and taking care of things at home. Once home, I took the wafer off and could see that it might have lasted another hour or so, but the seal was quickly being compromised. I was glad I caught it as we were taking the kids to an outdoor movie and would be out of the house for a few hours. I would have ended up with a public restroom change which I've been able to avoid so far. New system in place, I went on about my business. Everything seemed fine with this second change. I guess that's part of the reason I felt so defeated when I woke up at 4:30, went in to empty, and found the leak.
It ultimately turned out that yesterday was the perfect storm culmination of a couple of issues I've been dealing with over the last few weeks. The first is that I've lost about 25 pounds since my stoma was placed. Originally, the location was selected because it was on the "summit" of the "hill" that my lower belly formed. Now that I've lost weight, the size of the belly hill has shrunk and the stoma is no longer perched atop that summit. It is now sort of above it and toward the new place where my skin wants to fold in (still working on shrinking that hill, so yes there is still a fold....just a smaller one!). One thing I've noticed in the last couple of weeks is that the edge of the stiff collar formed by the mechanical coupling of my wafer (the plastic ring the pouch snaps onto) seems to poke beyond the edge of where my belly wants to fold in. I'm thinking that when I move around a lot and get into positions where I'm more "folded up" than usual (like sitting cross legged on the ground at an outdoor movie) that firmer area can't bend with my new curvature and it ends up pulling away a bit. I think this has caused some of my leaks. Another issue is that my digestion has really thickened and slowed down. This is good in some ways because it mean less emptying, lower dehydration risk, etc. It is also bad in some ways because really thick output is hard for the stoma to pass. I seem to be more and more susceptible to partial blockages all the time. This lands me in that situation I've mentioned in the past where output is forced past the stoma and into the "downstream" piece of intestine that forms my loop ileo. Since I'm not hooked up inside, there is nowhere for this stuff to go until it collects a bit and eventually gets squeezed back out through the tiny secondary opening at the base of my stoma. This almost always results in a seal loss because what is coming out is thick and typically has nowhere to go but under the wafer edge. I try to leave a little space at the side where the opening is, but a lot of times the paste ring will swell up and block it off anyway.
Early this morning I was feeling really defeated. At one point I asked my husband if he would be able to get the time off of work if I moved my appointment up and tried to have surgery in early September instead of mid-October. He was supportive, but he seemed to know that wasn't the best thing for me. It would mean giving up another half marathon after I've been training so hard and doing so well. I guess my thinking was that moving up Step 2 would move up Step 3 and get the whole thing over faster. I just wanted to be done. I laid there in bed and thought and thought about things. I don't think I went back to sleep at all. I finally decided I wasn't going to let this set back beat me. I know I need to drink more fluids with my meals and throughout the day to cut back on the thickening issue. I can do that, it's an easy fix. I also went online today and researched some of the other appliances that are out there. I'm still using the same one I came home from the hospital with even though my body has drastically changed. It's no wonder I'm having problems! I requested some samples of a few systems I think might work better and I'll give them a try once they get here. I feel like I'm back on track now and I can manage this. I will move forward according to my timeline. I will train for and run my race. I can do this.
Monday, August 8, 2011
Chose Your Hard
I've been a member of Weight Watchers for almost a year now. In that time, I've lost 55 pounds with the program (coupled with 15 of my own in the month prior for a grand total of 70). It hasn't been easy, but the tools and support of the program have made it doable. One particular meeting topic has been stuck in my head for a few days now just begging me to write about it, so here I am.
During the early fall holiday season last year, my WW leader gave a presentation where she talked about how all phases of the weight loss process are hard. It is hard being overweight. It is hard to lose weight. It is hard to maintain that weight loss once you achieve your goal. As a group we shared the things that are hard about each phase and created a list on a white board. Once they were all up there she looked at all of us and told us it's up to us to chose our hard. If all of these phases are hard, which one do you want to be in while you are experiencing hard? It was a light bulb moment for me and a message I've drawn upon many times during my weight loss journey.
In the last few days, I've been thinking about how this same message applies to life with an IBD, especially for those of us who end up on the path to surgery. There is no doubt at all that many things about life with an ostomy are hard. The learning curve is steep, ignorance and stigma abound, and there is a lot of forging your own way to be done. The thing is though that life with UC was also hard. Fighting flares is hard. Dealing with the side effects from medication is hard. Gritting your teeth and hoping you'll make it to the front of the grocery store to get to the bathroom in time is hard. Being anemic is hard. Knowing you could poop your pants during a training run but going out and doing it anyway is hard. Being in daily pain is hard. The decision to have surgery is also hard. For me, it meant accepting that I would be cut into and hospitalized on three separate occasions and deciding to embrace that process. There is no question that recovery is hard, and so is the separation from my children when I have to be in the hospital. All of these things are hard.
I've chosen my hard. I picked the one that restored health to my body and freedom to my life. Yes, I have an ostomy which means I have some daily things I need to do that not everyone does. There are things about it that are hard---like sometimes worrying about leaks, fighting dehydration, and working around some dietary tweaks. There are times when I wonder why on earth I did this, and then I remember and I take my newly healthy body out for a nice run. I'm only part of the way down a road that is sure to bring more hard, but it's my hard. It's the one I've chosen and I don't regret that choice one bit.
You have to chose your hard.
During the early fall holiday season last year, my WW leader gave a presentation where she talked about how all phases of the weight loss process are hard. It is hard being overweight. It is hard to lose weight. It is hard to maintain that weight loss once you achieve your goal. As a group we shared the things that are hard about each phase and created a list on a white board. Once they were all up there she looked at all of us and told us it's up to us to chose our hard. If all of these phases are hard, which one do you want to be in while you are experiencing hard? It was a light bulb moment for me and a message I've drawn upon many times during my weight loss journey.
In the last few days, I've been thinking about how this same message applies to life with an IBD, especially for those of us who end up on the path to surgery. There is no doubt at all that many things about life with an ostomy are hard. The learning curve is steep, ignorance and stigma abound, and there is a lot of forging your own way to be done. The thing is though that life with UC was also hard. Fighting flares is hard. Dealing with the side effects from medication is hard. Gritting your teeth and hoping you'll make it to the front of the grocery store to get to the bathroom in time is hard. Being anemic is hard. Knowing you could poop your pants during a training run but going out and doing it anyway is hard. Being in daily pain is hard. The decision to have surgery is also hard. For me, it meant accepting that I would be cut into and hospitalized on three separate occasions and deciding to embrace that process. There is no question that recovery is hard, and so is the separation from my children when I have to be in the hospital. All of these things are hard.
I've chosen my hard. I picked the one that restored health to my body and freedom to my life. Yes, I have an ostomy which means I have some daily things I need to do that not everyone does. There are things about it that are hard---like sometimes worrying about leaks, fighting dehydration, and working around some dietary tweaks. There are times when I wonder why on earth I did this, and then I remember and I take my newly healthy body out for a nice run. I'm only part of the way down a road that is sure to bring more hard, but it's my hard. It's the one I've chosen and I don't regret that choice one bit.
You have to chose your hard.
Sunday, July 24, 2011
12 Weeks and Counting
As of this morning, my fall half marathon is exactly 12 weeks away. I'm starting to get excited for it. I've been running for 9 years now and I can't believe this will be the first time I'm running my hometown race. Kind of crazy. I've just never been in the right place at the right time training-wise so it's nice to be getting ready for this and able to participate in the growing buzz among the local running community. I feel like my training is going really well right now. I'm feeling strong--nothing hurts, I'm not overly tired, things are moving along like they are supposed to.
Saturday's long run was another test of the new me and how well I can manage differing conditions and situations with my new guts. Aside from blockages, the greatest threat to someone with an ileostomy is dehydration. It will take us down fast and land us in the hospital on IV fluids if we aren't careful. We've been experiencing a pretty major heatwave here for the last two weeks or so and it got especially bad this past week. Temperature indexes have been in the triple digits each day, humidity levels are off the charts, and air quality alerts have been issued on most days. I do most, if not all, of my week day running on a treadmill in the air conditioned basement. It is the easiest way to get things done consistently while taking care of my children. It also keeps me in the safest conditions possible for summer running, and I feel fortunate to have this resources available. I could never train as well and often as I do if I didn't have this option.
Long runs are a different matter. I need my group. I need to get outside. I need the mental and physical break from the monotony of the treadmill. So, I get up stupidly early on Saturday mornings and join my MIT (Marathoner In Training) group for long runs. This weekend we bumped the start time up to 6:30 a.m. in an effort to dodge the worst of the heat. At 5:30 it was 79 degrees with 80% humidity. Bad, bad news. I was really nervous about getting through the run. I'm not acclimated to heat right now. I'm scared to death of dehydrating in good conditions, so this had me really edgy. I decided to take the 48 hours leading up to the run and use them to aggressively hydrate and make sure I was as topped up on electrolytes as possible. I doubled my intake of Powerade Zero (my electrolyte drink of choice) and made sure I had plenty of water throughout the day. I also took a break from alcohol, no evening glass of wine. I did not skip my coffee though....I'm not completely crazy! Friday evening I added some extra salt to my meal and I chose pretzels for breakfast Saturday morning to take a little extra salt on board. I had prepped about as well as I could from a nutritional stand point.
I've been using GuBrew tablets in my hand-held water bottle for long runs. They have a higher level of electrolytes than my Powerade Zero yet are still basically sugar free. With as much as I need to drink, I prefer to keep my sugar and fluid replacement separate at this point, so I start out with a sugar free electrolyte drink. MIT had fluid stations at the 1 mile, 2, 4 and 6 mile points. We would go out 3.5 and then turn around to come back, so we hit stops at miles 1, 2, 5 and 6. I kept up my normal pattern of drinking as each song changed on my iPod. I was also wearing two of my 8 oz water bottles in my Fuel Belt with plans to use one to take my gel and the other was for emergency back up in case I ran out at some point. As we hit the fluid stations, I added Powerade to my hand-held to top it up, so I gradually transitioned over to all Powerade as the run progressed. This worked nicely for me and I think I'll keep doing it. At about 3.5 miles I took a gel, and at the one hour mark I took 2 Endurolyte electrolyte capsules. I think I went through about three bottles worth of sports drink in the handheld (about 60 oz), 8 oz of water during the run (to take my gel), one gel, the 2 caps, and about 12 oz of water at the finish of the run. I didn't lose any weight from start to finish, and my skin wasn't all covered in salt afterward, so I think I managed things well.
Midway through I was feeling strange in my head. I wasn't light headed, but I felt slightly mentally confused. I couldn't decide at first if I just needed my gel or if it was the temps getting to me. I realized that sweat was dripping off of my shorts and the brim of my hat. I knew then that it was pretty bad and I was taking in about all I could without making myself sick to my stomach. I also felt like my heart rate was up and I was working a little too hard even though we were about 20 seconds or so below our average pace (and a full minute below what I'd done the week before!). I knew it was the heat and I decided I didn't have anything to prove to anyone. The smart thing to do at this point was to dial it down and make it back to the starting point without ending up in a dangerous situation. There were a few other runners around me at that time who seemed to be struggling, so I asked them if they wanted to do a run/walk interval with me for the trip back. We settled into a 3 min/2 min run/walk pattern and finished the mileage feeling much better than we did when we were at the turn around. In the past I would have beaten myself up for "quitting" and walking, but I realized it was the smart thing to do. How "tough" would I have looked getting carted away in an ambulance? Not cool at all.
My appliance held up perfectly to all of this punishment. I had a little bit of nerves about it because I had my phone in my Fuel Belt and it made it heavier than normal. I kept feeling like it was pressing down on the top of my wafer, but I don't think it was---or at least not enough to cause any problems. I did a change out when I got home and actually had a heck of a time getting the wafer off because the heat caused everything to really melt onto my skin. I could see that the paste ring wouldn't have held up for much longer, so I'm glad I changed it out when I did. I messed things up when putting on the new wafer. The paste ring I made was kind of glopping over the edge at the top of the wafer, but I didn't really notice until I'd stuck the whole thing on. The paste at the top was rolled inward and very close to the opening of my stoma. I knew it would fail at some point, but it was firmly in place and I didn't want to rip the whole thing off again. I decided to just wear it and keep an eye on it until I had to change it. I was thinking maybe 24 hours or something....turns out it was more like five! I did a quick check of things before we left to meet some family for dinner and I had a leak. No big deal. I did a change and we were on our way. It was my first change outside of the shower in a long time, but I have enough of a routine down now that it was still pretty easy.
I'm not going to lie, I can't wait to get through the remainder of my surgeries and get rid of my ostomy. The idea of one less thing to think about and maintain as I go through my day holds a ton of appeal right now. I will say though that the past couple of months have taught me that I would truly be ok if I somehow ended up having to keep it or get another one. I know there would be some mental speed bumps to get over, but ultimately I would be fine.
Saturday's long run was another test of the new me and how well I can manage differing conditions and situations with my new guts. Aside from blockages, the greatest threat to someone with an ileostomy is dehydration. It will take us down fast and land us in the hospital on IV fluids if we aren't careful. We've been experiencing a pretty major heatwave here for the last two weeks or so and it got especially bad this past week. Temperature indexes have been in the triple digits each day, humidity levels are off the charts, and air quality alerts have been issued on most days. I do most, if not all, of my week day running on a treadmill in the air conditioned basement. It is the easiest way to get things done consistently while taking care of my children. It also keeps me in the safest conditions possible for summer running, and I feel fortunate to have this resources available. I could never train as well and often as I do if I didn't have this option.
Long runs are a different matter. I need my group. I need to get outside. I need the mental and physical break from the monotony of the treadmill. So, I get up stupidly early on Saturday mornings and join my MIT (Marathoner In Training) group for long runs. This weekend we bumped the start time up to 6:30 a.m. in an effort to dodge the worst of the heat. At 5:30 it was 79 degrees with 80% humidity. Bad, bad news. I was really nervous about getting through the run. I'm not acclimated to heat right now. I'm scared to death of dehydrating in good conditions, so this had me really edgy. I decided to take the 48 hours leading up to the run and use them to aggressively hydrate and make sure I was as topped up on electrolytes as possible. I doubled my intake of Powerade Zero (my electrolyte drink of choice) and made sure I had plenty of water throughout the day. I also took a break from alcohol, no evening glass of wine. I did not skip my coffee though....I'm not completely crazy! Friday evening I added some extra salt to my meal and I chose pretzels for breakfast Saturday morning to take a little extra salt on board. I had prepped about as well as I could from a nutritional stand point.
I've been using GuBrew tablets in my hand-held water bottle for long runs. They have a higher level of electrolytes than my Powerade Zero yet are still basically sugar free. With as much as I need to drink, I prefer to keep my sugar and fluid replacement separate at this point, so I start out with a sugar free electrolyte drink. MIT had fluid stations at the 1 mile, 2, 4 and 6 mile points. We would go out 3.5 and then turn around to come back, so we hit stops at miles 1, 2, 5 and 6. I kept up my normal pattern of drinking as each song changed on my iPod. I was also wearing two of my 8 oz water bottles in my Fuel Belt with plans to use one to take my gel and the other was for emergency back up in case I ran out at some point. As we hit the fluid stations, I added Powerade to my hand-held to top it up, so I gradually transitioned over to all Powerade as the run progressed. This worked nicely for me and I think I'll keep doing it. At about 3.5 miles I took a gel, and at the one hour mark I took 2 Endurolyte electrolyte capsules. I think I went through about three bottles worth of sports drink in the handheld (about 60 oz), 8 oz of water during the run (to take my gel), one gel, the 2 caps, and about 12 oz of water at the finish of the run. I didn't lose any weight from start to finish, and my skin wasn't all covered in salt afterward, so I think I managed things well.
Midway through I was feeling strange in my head. I wasn't light headed, but I felt slightly mentally confused. I couldn't decide at first if I just needed my gel or if it was the temps getting to me. I realized that sweat was dripping off of my shorts and the brim of my hat. I knew then that it was pretty bad and I was taking in about all I could without making myself sick to my stomach. I also felt like my heart rate was up and I was working a little too hard even though we were about 20 seconds or so below our average pace (and a full minute below what I'd done the week before!). I knew it was the heat and I decided I didn't have anything to prove to anyone. The smart thing to do at this point was to dial it down and make it back to the starting point without ending up in a dangerous situation. There were a few other runners around me at that time who seemed to be struggling, so I asked them if they wanted to do a run/walk interval with me for the trip back. We settled into a 3 min/2 min run/walk pattern and finished the mileage feeling much better than we did when we were at the turn around. In the past I would have beaten myself up for "quitting" and walking, but I realized it was the smart thing to do. How "tough" would I have looked getting carted away in an ambulance? Not cool at all.
My appliance held up perfectly to all of this punishment. I had a little bit of nerves about it because I had my phone in my Fuel Belt and it made it heavier than normal. I kept feeling like it was pressing down on the top of my wafer, but I don't think it was---or at least not enough to cause any problems. I did a change out when I got home and actually had a heck of a time getting the wafer off because the heat caused everything to really melt onto my skin. I could see that the paste ring wouldn't have held up for much longer, so I'm glad I changed it out when I did. I messed things up when putting on the new wafer. The paste ring I made was kind of glopping over the edge at the top of the wafer, but I didn't really notice until I'd stuck the whole thing on. The paste at the top was rolled inward and very close to the opening of my stoma. I knew it would fail at some point, but it was firmly in place and I didn't want to rip the whole thing off again. I decided to just wear it and keep an eye on it until I had to change it. I was thinking maybe 24 hours or something....turns out it was more like five! I did a quick check of things before we left to meet some family for dinner and I had a leak. No big deal. I did a change and we were on our way. It was my first change outside of the shower in a long time, but I have enough of a routine down now that it was still pretty easy.
I'm not going to lie, I can't wait to get through the remainder of my surgeries and get rid of my ostomy. The idea of one less thing to think about and maintain as I go through my day holds a ton of appeal right now. I will say though that the past couple of months have taught me that I would truly be ok if I somehow ended up having to keep it or get another one. I know there would be some mental speed bumps to get over, but ultimately I would be fine.
Sunday, July 17, 2011
Yes, I Do Mean Anything....
I keep talking about how you really can get your life back and do anything you really want to do after surgery for UC or Crohn's, so I wanted to share this great article that illustrates exactly what I mean. Zak Hammond is a perfect example of what I mean when I say "Life Takes Guts." You just have to get out there and go after whatever it is you feel inspired to do. Don't let your illness stop you. Don't let fear of how the ostomy will hold up or what might happen stop you. Don't let your own self-consciousness stop you. Odds are very good nothing bad will happen. Odds are also very good that nobody will be able to tell you have an ostomy. People don't pay as much attention to us as we like to think they do. Even if they can tell, so what? It's an opportunity to educate, dispel myths, and show your strength.
Don't be afraid. Don't hold yourself back. Get out there!
Don't be afraid. Don't hold yourself back. Get out there!
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