I ran six miles this morning with my half marathon training group. Six awesome miles. Oh, I also went with a faster pace group than I normally do and I did not die. I am running faster and stronger than I have in years. All of this amazes me to no end seeing as I had my abdomen sliced open and my colon removed less than four months ago. I still marvel at the amazing miracle of having my health restored. Yes, there are things about having this ileostomy that are a total pain in the, umm, butt I guess....but what I have gained from it so far outweighs any and all of the negative stuff. I would not go back and do it differently if given the chance, unless it meant maybe I did it a little sooner instead of getting so sick. The thing is though, I think I had to get to where I was in order to be ready. The whole thing is quite the undertaking, so being ready is of the utmost importance.
I only ended up with one little ostomy related snafu during my vacation. At one point, I had a pouch where the adhesive that holds the velcro on the closure just gave out. This meant I could roll it up and velcro it, but it wasn't going to stay closed. Not so good. Luckily, I had ducked into the bathroom for a just in case last minute emptying type thing right as we were on our way out for some shopping. Thank goodness I am in this habit of checking on things one last time before leaving the house! I simply switched out pouches since I use a two piece. It was my first time doing this, but it was super easy. All I had to do was pop off the old one, use a couple of flushable wipes to clean around the snap ring, and then pop the new pouch on. Then I was ready to roll again. I thought maybe the adhesive gave out because of too much exposure to water, but it happened a second time after I got home. That pouch had only been exposed to two showers and no running or swimming. Very odd. I had plans to change the whole appliance that evening, so this time I broke out the super glue and reattached the velcro to where it was supposed to be. That was a nice solution and everything held up perfectly until I did my change later that night. I'm wondering if there isn't a defect in this box of pouches or something? I'm not sure. The pouch I'm wearing now went on Tuesday night and it hasn't had any issues though I've run in it a few times and showered as well. Might have just been a crazy fluke. I will definitely continue to check on them before I go out though!
I am also really happy about my weight loss situation, especially considering a week of vacationing away from home. I didn't really follow all of my Weight Watcher's stuff during my trip, but I did call on some of my new habits such as controlling my portions, deciding which "bad" foods were really worth the splurge and which ones I could ignore, and keeping my exercise up. The end result was a one pound gain. I was thrilled. I completely enjoyed myself, don't feel like I missed out on anything, and the damage was minimal. Yay, me! I now have a little less than 10 pounds to lose to make Dr. L happy when I go back in September. I'm more confident than ever that I'll get the job done. Still hoping to schedule surgery #2 for right after the Columbus half in mid-October. Hopefully he agrees!
Saturday, July 16, 2011
Wednesday, July 6, 2011
Greetings from the beach!
It's kind of gloomy and thundery this afternoon and both of my kids are sleeping, so this seems like a good time to pop in and give an update on how the whole vacation thing is going. I am really happy to say I've had absolutely zero ostomy related issues. I put on a new appliance Friday afternoon and, when I changed it out yesterday, it was still perfect....absolutely no compromise of the seal or sign of impending leakage. This was after a day and a half of car travel, two sweaty beach runs, a day on the beach and in the pool, lots, lots, lots of junk food and a moderate amount of adult beverages. Hooray! Sure Seals are definitely the ticket. They've worked a charm and I feel so confident--even while sleeping. I'm really glad I got them. :-)
Friday, July 1, 2011
Fasten Your Seat Belts!
Early tomorrow morning we will leave for a week-long beach vacation. How early is still to be seen. My lovely husband has this elaborate fantasy of making it out of the house and being on the road by 6:00 a.m. I just look at our two little monkey boy children, smile, and let him dream his dream. At any rate, we will at some point arrive at our destination where we are set to spend a week with family at the beach. The house we are staying in looks to be amazing and gorgeous. Right on the beach! I'm really excited.
I'm also excited because this will be a big test of my carefully cultivated ostomy management skills. There will be many challenges and I'm looking forward to seeing what the outcomes will be. I'll be facing the whole swim suit thing head on. There will be time spent in the pool, a hot tub (maybe? not sure how much I'll want to be in there depending upon the temps), and in the ocean. I am also planning to run on the beach. There is the added bonus of my first major car trip with an ostomy. Lots and lots to tackle head on. I'm interested to see how it goes.
The one thing I am doing to put myself at ease is over-packing. I have plenty of clothes and we have access to laundry so if there is an "incident" I will be fine. I'm also taking along a ridiculous amount of ostomy supplies so if I end up needing to change my appliance more frequently it won't be a big deal. I am now very confident with my Sure Seals and paste set up, so I'm not too worried about having leaks, etc. My goal was to plan, pack, and then relax. I think I'm ready!
I'm also excited because this will be a big test of my carefully cultivated ostomy management skills. There will be many challenges and I'm looking forward to seeing what the outcomes will be. I'll be facing the whole swim suit thing head on. There will be time spent in the pool, a hot tub (maybe? not sure how much I'll want to be in there depending upon the temps), and in the ocean. I am also planning to run on the beach. There is the added bonus of my first major car trip with an ostomy. Lots and lots to tackle head on. I'm interested to see how it goes.
The one thing I am doing to put myself at ease is over-packing. I have plenty of clothes and we have access to laundry so if there is an "incident" I will be fine. I'm also taking along a ridiculous amount of ostomy supplies so if I end up needing to change my appliance more frequently it won't be a big deal. I am now very confident with my Sure Seals and paste set up, so I'm not too worried about having leaks, etc. My goal was to plan, pack, and then relax. I think I'm ready!
Monday, June 27, 2011
You Can Get Your Life Back!
Can I just take a minute and tell you all about my amazing weekend? Well, I guess it's my blog so the answer is yes...right?
I went into the weekend with a little uneasiness and a touch of nerves. I had two big running related items on the agenda. The first, a five mile training run with my Saturday morning running group. This would be the longest run since surgery, and it gave me a few butterflies as I prepared for it. I know I will face this feeling over and over as my training progresses toward my October half marathon, but I'm still getting used to it. Actually, I get that feeling before every long run and I always have. I think it's the thing that drives me to double check my equipment, to get everything ready the night before, to verify (and re-verify) that batteries are charged in the Garmin and iPod. That need to check, check, and re-check to make sure I haven't forgotten anything. I know I'm not the only runner who experiences this, it's just something that we do.
Saturday morning the weather was perfect. I was wearing a pouch I had applied on Thursday. I figured if the long run trashed it like last week, at least I would have a couple of days on it first. With the Sure Seal I wasn't nervous about running in a two day old set up at all. The run was mostly uneventful which is great for a training run. I did feel a little loss of energy or bounce around the four mile mark. I think my need for gels hits sooner now than it did before. I've also talked things over with a few distance runner friends and determined I'm going to add some salt supplementation for anything over four miles. Somewhere between adding sugar and adding salt it should even things back out. This balancing act is always an experiment during training, and with my new innards this season is no exception. I'll dial it in though, no doubt about that.
Sunday morning was a whole different monster. It was race day! We entered a 5K to support a local political issue and it would be my first race in a long time. I had about three days worth of internal debate about racing versus "just running" this event. When I finally shared my dilemma with my husband he just said, "Well, of course you'll go out there and go as fast as you can." It was like he couldn't believe I was considering any other option. Love that guy! The weather Sunday morning was about as perfect as you could ask for in late June and that sealed the deal. I was still wearing the same appliance as I'd worn in Saturday's run as it was holding up just fine. I did decide to carry my hand held water bottle which I would have never done in a previous 5K. It was kind of nice to be able to bypass the water station though!
I ran a strong race, but I pushed too hard for the first half. At the turn around I realized if I went faster on the way back at all I would beat my personal record. I really went after it, but when I hit the two mile mark my legs just died and I took my first walk break. I'm not sure how many times I walked but I want to say it was three times for about 40 seconds each. In the end, it made my last mile about a minute longer than my first. I missed my personal record by about 50 seconds. During the race I was completely unaware of the ostomy. It was a great feeling!
Afterward I went through a period of being a little stern with myself and wondering if I couldn't have pushed a little harder and done better. Once I got a nap (and some perspective!) I came around and really thought about things in the right way. It was three months ago that I was laying in a hospital bed up at Cleveland Clinic hoping I'd get to go home soon. It was an effort to take those 10 minute walks around the floor. Now I'm pushing close to beating my best time at a racing distance that has always presented a huge challenge to me. I'm not only running, but I'm running well. I'm stronger and faster than I've ever been at this point in the training cycle. That is truly something! My finally healthy body is able to respond to the training in a positive way and I'm excited to see where I can take it this year. These are amazing times for me after all of those years of illness, pills, and fatigue. I need to celebrate these things!
So yes, friend...if you are reading this while researching surgery, or maybe you're in the hospital and they are telling you that you need a colectomy and you're scared, or you've just had surgery and you feel so weak and tired....you can get your life back. If you are wondering if you'll ever be able to do whatever that thing is that lights your inner fire again, the answer is yes...at some point you will. Let yourself get healthy, let your body heal, and then you go after it and you find a way to make it work. I promise you, it's worth it.
I went into the weekend with a little uneasiness and a touch of nerves. I had two big running related items on the agenda. The first, a five mile training run with my Saturday morning running group. This would be the longest run since surgery, and it gave me a few butterflies as I prepared for it. I know I will face this feeling over and over as my training progresses toward my October half marathon, but I'm still getting used to it. Actually, I get that feeling before every long run and I always have. I think it's the thing that drives me to double check my equipment, to get everything ready the night before, to verify (and re-verify) that batteries are charged in the Garmin and iPod. That need to check, check, and re-check to make sure I haven't forgotten anything. I know I'm not the only runner who experiences this, it's just something that we do.
Saturday morning the weather was perfect. I was wearing a pouch I had applied on Thursday. I figured if the long run trashed it like last week, at least I would have a couple of days on it first. With the Sure Seal I wasn't nervous about running in a two day old set up at all. The run was mostly uneventful which is great for a training run. I did feel a little loss of energy or bounce around the four mile mark. I think my need for gels hits sooner now than it did before. I've also talked things over with a few distance runner friends and determined I'm going to add some salt supplementation for anything over four miles. Somewhere between adding sugar and adding salt it should even things back out. This balancing act is always an experiment during training, and with my new innards this season is no exception. I'll dial it in though, no doubt about that.
Sunday morning was a whole different monster. It was race day! We entered a 5K to support a local political issue and it would be my first race in a long time. I had about three days worth of internal debate about racing versus "just running" this event. When I finally shared my dilemma with my husband he just said, "Well, of course you'll go out there and go as fast as you can." It was like he couldn't believe I was considering any other option. Love that guy! The weather Sunday morning was about as perfect as you could ask for in late June and that sealed the deal. I was still wearing the same appliance as I'd worn in Saturday's run as it was holding up just fine. I did decide to carry my hand held water bottle which I would have never done in a previous 5K. It was kind of nice to be able to bypass the water station though!
I ran a strong race, but I pushed too hard for the first half. At the turn around I realized if I went faster on the way back at all I would beat my personal record. I really went after it, but when I hit the two mile mark my legs just died and I took my first walk break. I'm not sure how many times I walked but I want to say it was three times for about 40 seconds each. In the end, it made my last mile about a minute longer than my first. I missed my personal record by about 50 seconds. During the race I was completely unaware of the ostomy. It was a great feeling!
Afterward I went through a period of being a little stern with myself and wondering if I couldn't have pushed a little harder and done better. Once I got a nap (and some perspective!) I came around and really thought about things in the right way. It was three months ago that I was laying in a hospital bed up at Cleveland Clinic hoping I'd get to go home soon. It was an effort to take those 10 minute walks around the floor. Now I'm pushing close to beating my best time at a racing distance that has always presented a huge challenge to me. I'm not only running, but I'm running well. I'm stronger and faster than I've ever been at this point in the training cycle. That is truly something! My finally healthy body is able to respond to the training in a positive way and I'm excited to see where I can take it this year. These are amazing times for me after all of those years of illness, pills, and fatigue. I need to celebrate these things!
So yes, friend...if you are reading this while researching surgery, or maybe you're in the hospital and they are telling you that you need a colectomy and you're scared, or you've just had surgery and you feel so weak and tired....you can get your life back. If you are wondering if you'll ever be able to do whatever that thing is that lights your inner fire again, the answer is yes...at some point you will. Let yourself get healthy, let your body heal, and then you go after it and you find a way to make it work. I promise you, it's worth it.
Sunday, June 19, 2011
Ostomy on the Run
When I was preparing for surgery, I was desperate for information from a running ostomy person. I really couldn't find anything detailing how anyone managed running with an ostomy, so I've decided to outline some of what I do here. Keep in mind, different things work for different people as far as appliances and set-ups...but this will at least give you an idea of one possible way of doing things. Here is a run-down of my appliance and accessory set-up as well as running gear:
1) Basic appliance: I am still using the Hollister 2-piece Lock n Roll drainable pouch I've been using since I left the hospital. I wear a convex wafer and have switched from the Adapt ring to Stomahesive paste in an attempt to address some leakage issues I was having. I don't think there is anything special about my appliance in regards to running, this just happens to be the one I use. I would personally think a drainable bag is better than a closed end system for distance running because you can stop in a port-a-potty and empty if needed rather than changing out pouches.
2) The next item I use is an Adapt ostomy belt. This is just a thin elastic belt that attaches to the tabs on the pouch and goes around my waist. It helps keep the pouch close to my body and provides reinforcement as it fills so the weight doesn't pull it down. I basically wear one of these belts 24x7.
3) The next step is probably one of the most important in my being able to run with confidence....Sure Seals! I have just discovered these and all I can say is, if I ever meet the person who came up with them I'm likely to kiss them full on the mouth. If you don't know what they are, it's a piece of clear, thin, super sticky adhesive film that goes over the wafer and extends out onto your skin beyond the borders of the wafer tape. They make the wafer water proof which is really nice for swimming and showering. The big, fat, huge bonus to them though is the fact that they will contain pretty much any leak you might experience. I've heard amazing things, but it wasn't until I got to experience this aspect myself that I realized why people rave about them so much! Yesterday between sweating through my super humid four mile morning run, and also walking around an outdoor festival for several hours in the heat, I ended up losing the seal around the bottom of my pouch. It was a sizable leak, but the Sure Seal kept everything inside---no smell, nothing on my clothes, nobody knew and I had the time I needed to get my supplies together and get changed without worrying about trying to avoid a further mess. I was so happy! I will definitely keep using them and wouldn't want to run or swim without them at this point. If you are an active person and haven't tried them, then you definitely should!
4) The next layer of my ensemble varies depending upon how far I'm running and whether I am on the treadmill at home or outdoors. If I'm on the treadmill at home it's typically shorter distance and I can stop anytime if I need to fix anything, etc. In this situation I like to wear a regular pair of underwear plus my running shorts with the built in brief. The built in brief provides enough support for the pouch while the two layers keep the bag off of my skin. If I'm running longer, or running outdoors, I like to wear a regular pair of underwear plus my belly band (the maternity type). Then I pull on whatever shorts I want to wear or a running skirt. The belly band holds the pouch really flat and close to my body and provides a lot of support to keep it from bouncing around.
5) Hydration, hydration, hydration is the mantra they drum into our head as ostomy people. This is doubly important when running long distances in hot weather like I am doing right now. So far I've been able to get through my runs with a 20 oz. hand-held bottle (I like the one from Amphipod). My training group sets up water stops every 2-3 miles and I make sure to fill my bottle up at each stop. I start out with Powerade Zero and will add the regular Powerade they supply at each stop. If I get tired of Powerade, I will start adding water to cut it down a bit. At the end of the run, I make sure I drink at least one bottle of plain water. I make sure to take a drink from my bottle at the start of each new song on my iPod, or more frequently if I feel like I need it. I did purchase a 4 bottle Fuel Belt which I plan to start wearing as our runs progress. Though I know the water stops are out there, I want to make 100% sure I have the fluids I need at any given point. I think it's my responsibility to avoid a dangerous situation, so I will carry the water I need for any emergency that might arise. I do plan to start taking salt tabs as our runs push past the one hour mark as well. That will be an experiment because I've never used them before. I tend to lose a ton of salt anyway when I run, so I think it's best that I supplement so I don't end up low on electrolytes.
6) I needed to work out a way to carry an emergency pouch change kit with me on the trail. I ended up buying a large size pouch from Fuel Belt that I could add to my bottle belt or race number belt. The pouch was just the right size to put a wafer (I pre-cut it to my stoma size so I don't need to carry scissors), folded up pouch, Adapt ring, and a couple of disposable wipes inside. I skipped the adhesive remover thinking if I get into a situation where I need this on the trail then the adhesive from the wafer is probably compromised enough that I can remove it easily. I also skipped the stoma powder because of the bulk and I can make do without it for a day or so if needed. I really hope to never need any of the items in this pouch, but carrying it makes me feel much more secure. I do keep my full on the go change kit in the car with more extensive supplies.
7) Last, but not least, is my Road ID elite identification bracelet. I went with the Interactive version that not only gives my name and emergency contact information, but it allows me to maintain an online profile with my medical information, surgeon's contact information, etc. This will ensure that any medical personnel can access the specifics about my medical condition in the event that I need assistance and can't speak for myself. I've always run with Road ID, but it's doubly important now that I have this type of medical history that must be communicated to first responders. I actually now wear my Road ID elite bracelet all the time just as a precaution so I know I'm covered in any situation where I might need emergency medical attention.
So, there you have it....how one ostomy runner makes things work for her. I'm happy to take any comments or discuss other products or tips that other active people have found useful. Just leave your questions or tips in the Comments section. Also, if you are into backpacking, hiking, or snow boarding you should check out Heidi's blog Ostomy Outdoors for some great tips and inspiration for getting back into outdoor adventures with an ostomy. I love the videos she has posted there, and I'm sure you will as well. The main thing to remember is to not be afraid to try new things. We only get this one life. Get out there and live it!
1) Basic appliance: I am still using the Hollister 2-piece Lock n Roll drainable pouch I've been using since I left the hospital. I wear a convex wafer and have switched from the Adapt ring to Stomahesive paste in an attempt to address some leakage issues I was having. I don't think there is anything special about my appliance in regards to running, this just happens to be the one I use. I would personally think a drainable bag is better than a closed end system for distance running because you can stop in a port-a-potty and empty if needed rather than changing out pouches.
2) The next item I use is an Adapt ostomy belt. This is just a thin elastic belt that attaches to the tabs on the pouch and goes around my waist. It helps keep the pouch close to my body and provides reinforcement as it fills so the weight doesn't pull it down. I basically wear one of these belts 24x7.
3) The next step is probably one of the most important in my being able to run with confidence....Sure Seals! I have just discovered these and all I can say is, if I ever meet the person who came up with them I'm likely to kiss them full on the mouth. If you don't know what they are, it's a piece of clear, thin, super sticky adhesive film that goes over the wafer and extends out onto your skin beyond the borders of the wafer tape. They make the wafer water proof which is really nice for swimming and showering. The big, fat, huge bonus to them though is the fact that they will contain pretty much any leak you might experience. I've heard amazing things, but it wasn't until I got to experience this aspect myself that I realized why people rave about them so much! Yesterday between sweating through my super humid four mile morning run, and also walking around an outdoor festival for several hours in the heat, I ended up losing the seal around the bottom of my pouch. It was a sizable leak, but the Sure Seal kept everything inside---no smell, nothing on my clothes, nobody knew and I had the time I needed to get my supplies together and get changed without worrying about trying to avoid a further mess. I was so happy! I will definitely keep using them and wouldn't want to run or swim without them at this point. If you are an active person and haven't tried them, then you definitely should!
4) The next layer of my ensemble varies depending upon how far I'm running and whether I am on the treadmill at home or outdoors. If I'm on the treadmill at home it's typically shorter distance and I can stop anytime if I need to fix anything, etc. In this situation I like to wear a regular pair of underwear plus my running shorts with the built in brief. The built in brief provides enough support for the pouch while the two layers keep the bag off of my skin. If I'm running longer, or running outdoors, I like to wear a regular pair of underwear plus my belly band (the maternity type). Then I pull on whatever shorts I want to wear or a running skirt. The belly band holds the pouch really flat and close to my body and provides a lot of support to keep it from bouncing around.
5) Hydration, hydration, hydration is the mantra they drum into our head as ostomy people. This is doubly important when running long distances in hot weather like I am doing right now. So far I've been able to get through my runs with a 20 oz. hand-held bottle (I like the one from Amphipod). My training group sets up water stops every 2-3 miles and I make sure to fill my bottle up at each stop. I start out with Powerade Zero and will add the regular Powerade they supply at each stop. If I get tired of Powerade, I will start adding water to cut it down a bit. At the end of the run, I make sure I drink at least one bottle of plain water. I make sure to take a drink from my bottle at the start of each new song on my iPod, or more frequently if I feel like I need it. I did purchase a 4 bottle Fuel Belt which I plan to start wearing as our runs progress. Though I know the water stops are out there, I want to make 100% sure I have the fluids I need at any given point. I think it's my responsibility to avoid a dangerous situation, so I will carry the water I need for any emergency that might arise. I do plan to start taking salt tabs as our runs push past the one hour mark as well. That will be an experiment because I've never used them before. I tend to lose a ton of salt anyway when I run, so I think it's best that I supplement so I don't end up low on electrolytes.
6) I needed to work out a way to carry an emergency pouch change kit with me on the trail. I ended up buying a large size pouch from Fuel Belt that I could add to my bottle belt or race number belt. The pouch was just the right size to put a wafer (I pre-cut it to my stoma size so I don't need to carry scissors), folded up pouch, Adapt ring, and a couple of disposable wipes inside. I skipped the adhesive remover thinking if I get into a situation where I need this on the trail then the adhesive from the wafer is probably compromised enough that I can remove it easily. I also skipped the stoma powder because of the bulk and I can make do without it for a day or so if needed. I really hope to never need any of the items in this pouch, but carrying it makes me feel much more secure. I do keep my full on the go change kit in the car with more extensive supplies.
7) Last, but not least, is my Road ID elite identification bracelet. I went with the Interactive version that not only gives my name and emergency contact information, but it allows me to maintain an online profile with my medical information, surgeon's contact information, etc. This will ensure that any medical personnel can access the specifics about my medical condition in the event that I need assistance and can't speak for myself. I've always run with Road ID, but it's doubly important now that I have this type of medical history that must be communicated to first responders. I actually now wear my Road ID elite bracelet all the time just as a precaution so I know I'm covered in any situation where I might need emergency medical attention.
So, there you have it....how one ostomy runner makes things work for her. I'm happy to take any comments or discuss other products or tips that other active people have found useful. Just leave your questions or tips in the Comments section. Also, if you are into backpacking, hiking, or snow boarding you should check out Heidi's blog Ostomy Outdoors for some great tips and inspiration for getting back into outdoor adventures with an ostomy. I love the videos she has posted there, and I'm sure you will as well. The main thing to remember is to not be afraid to try new things. We only get this one life. Get out there and live it!
Monday, June 13, 2011
You Just Keep Trying...
Well, I'm now about 72 hours into my second pouch with the new paste set-up. I was amazed when I took the first paste only (no ring) pouch off and found that the skin around my stoma was 100% perfect. That was the first time for me since coming home from Cleveland. Even the first time my home nurse was helping me change out the pouch, I had this ring of red broken skin around the top half of the stoma base. It has varied in size or severity, and has always responded well to stoma powder, but it's always been there. This last change....nothing. I'm getting a little antsy about this pouch at the three day mark, so I'm going to change it out before bed. No point in pushing the envelope when I'm just getting comfortable. I'll be curious to see if the skin situation looks as good this time around, too.
I called Edgepark today and finally ordered some Sure Seals. I requested a sample from the company about a month ago and haven't heard a peep from them. They are a little expensive, but my insurance will cover 80% of the cost. For a couple of bucks, I was willing to order a box and give them a try. I don't know if I will use them all the time, but I definitely want them for my long runs on Saturday mornings, races, and our beach vacation coming up in a few weeks. I'll be spending a lot of time in and around the water, so the extra protection and confidence will be really nice. Speaking of which, I need to try on the new swim suit I ordered for this trip. I went with a new high waisted swim mini from Lands' End. I love their tankinis and have been wearing them for a few years now. I was feeling a little weird about having my top slip up and show the top of my pouch while in the pool. This high waisted swim mini will cover the whole thing, even the part that extends above my normal waist line. I'm very excited to try it on. Everyone we will be with knows about the ostomy, so it's not like I'm trying to hide it or anything...but I will feel more comfortable if it's not just hanging out and stuff.
Overall, things are going really well. I've got just over ten pounds left to lose before my follow up in September. I think I'm well on track to reach that goal. Then we'll be able to schedule my Step 2 surgery. I'm hoping for mid-October right after the Columbus half marathon. I don't know how long he'll have me wait for healing before Step 3. I keep reading 8-12 weeks, but I guess it depends on your surgeon and how well you tolerate everything. If everything goes flawlessly, I could be starting 2012 as a J-poucher! We will see, I guess. I'm learning very quickly that it's truly one day at a time with this thing.
I called Edgepark today and finally ordered some Sure Seals. I requested a sample from the company about a month ago and haven't heard a peep from them. They are a little expensive, but my insurance will cover 80% of the cost. For a couple of bucks, I was willing to order a box and give them a try. I don't know if I will use them all the time, but I definitely want them for my long runs on Saturday mornings, races, and our beach vacation coming up in a few weeks. I'll be spending a lot of time in and around the water, so the extra protection and confidence will be really nice. Speaking of which, I need to try on the new swim suit I ordered for this trip. I went with a new high waisted swim mini from Lands' End. I love their tankinis and have been wearing them for a few years now. I was feeling a little weird about having my top slip up and show the top of my pouch while in the pool. This high waisted swim mini will cover the whole thing, even the part that extends above my normal waist line. I'm very excited to try it on. Everyone we will be with knows about the ostomy, so it's not like I'm trying to hide it or anything...but I will feel more comfortable if it's not just hanging out and stuff.
Overall, things are going really well. I've got just over ten pounds left to lose before my follow up in September. I think I'm well on track to reach that goal. Then we'll be able to schedule my Step 2 surgery. I'm hoping for mid-October right after the Columbus half marathon. I don't know how long he'll have me wait for healing before Step 3. I keep reading 8-12 weeks, but I guess it depends on your surgeon and how well you tolerate everything. If everything goes flawlessly, I could be starting 2012 as a J-poucher! We will see, I guess. I'm learning very quickly that it's truly one day at a time with this thing.
Friday, June 10, 2011
And Now For Something Really Great!
Or not.
Sunday night I changed the pouch out as I was planning to and found a little deterioration to the barrier ring, but things looked okay. I attempted to leave a little extra room again on the new setup, but evidently did a horrible job of it that time. I woke up around 5:00 a.m. Tuesday morning and felt wet on my t-shirt. I got up and went straight to the bathroom and the mother of all catastrophic pouch failures was there tucked inside my belly band. I did slip back into the bedroom and happily find that between my ostomy belt, belly band, and t-shirt my bedding and sheets had been spared. It was really amazing considering the pouch was only being held on at that point by the bottom strip of wafer tape! After much showering and clean up, I was re-pouched and went back to bed for about an hour to get a little more sleep.
That afternoon I made a call to the WOC nurses up at Cleveland Clinic. I got to explain the situation and got some good advice from the nurse I spoke with. She agreed that the output from that secondary opening of my loop ileo was causing problems. Her advice was to start by switching from the Adapt paste ring to the Stomahesive paste that comes in a tube. The thinking behind that change is the Stomahesive paste does not swell up as much as the Adapt ring and hopefully will still allow room in the flange for the secondary opening to do its thing. She is also sending me some samples of a one piece convex pouch from Marlin that is supposed to be more flexible and able to move better with my body. If none of that works, then I'll end up going in to see them and get evaluated to see what we need to change.
So far, so good. Tuesday evening I decided I wasn't comfortable with the Adapt ring change I'd done early that morning. It was vaguely itchy which is never a good sign. I went ahead and changed things out before bed and used the suggested paste set-up. It's now Friday morning and that same pouch is still going strong with no issues. I'm very pleased. I will be changing it out later this afternoon and I'm curious to see how my skin looks underneath. Hopefully this new paste will take care of things. I still want to try the Marlin pouch when it comes, but I'm happy to have some relief from what I have on hand. I feel much better going into my group run tomorrow morning knowing this set-up will work for me.
I'm learning that it's always something and this whole ileostomy thing is a process. You have to be patient (which I am horrible at!) and willing to experiment a bit. You have to be willing to ask for help when you can't find your own answers. And you also have to be willing to accept support from family and friends when you are having a difficult time. All of these things make the process a little easier.
Sunday night I changed the pouch out as I was planning to and found a little deterioration to the barrier ring, but things looked okay. I attempted to leave a little extra room again on the new setup, but evidently did a horrible job of it that time. I woke up around 5:00 a.m. Tuesday morning and felt wet on my t-shirt. I got up and went straight to the bathroom and the mother of all catastrophic pouch failures was there tucked inside my belly band. I did slip back into the bedroom and happily find that between my ostomy belt, belly band, and t-shirt my bedding and sheets had been spared. It was really amazing considering the pouch was only being held on at that point by the bottom strip of wafer tape! After much showering and clean up, I was re-pouched and went back to bed for about an hour to get a little more sleep.
That afternoon I made a call to the WOC nurses up at Cleveland Clinic. I got to explain the situation and got some good advice from the nurse I spoke with. She agreed that the output from that secondary opening of my loop ileo was causing problems. Her advice was to start by switching from the Adapt paste ring to the Stomahesive paste that comes in a tube. The thinking behind that change is the Stomahesive paste does not swell up as much as the Adapt ring and hopefully will still allow room in the flange for the secondary opening to do its thing. She is also sending me some samples of a one piece convex pouch from Marlin that is supposed to be more flexible and able to move better with my body. If none of that works, then I'll end up going in to see them and get evaluated to see what we need to change.
So far, so good. Tuesday evening I decided I wasn't comfortable with the Adapt ring change I'd done early that morning. It was vaguely itchy which is never a good sign. I went ahead and changed things out before bed and used the suggested paste set-up. It's now Friday morning and that same pouch is still going strong with no issues. I'm very pleased. I will be changing it out later this afternoon and I'm curious to see how my skin looks underneath. Hopefully this new paste will take care of things. I still want to try the Marlin pouch when it comes, but I'm happy to have some relief from what I have on hand. I feel much better going into my group run tomorrow morning knowing this set-up will work for me.
I'm learning that it's always something and this whole ileostomy thing is a process. You have to be patient (which I am horrible at!) and willing to experiment a bit. You have to be willing to ask for help when you can't find your own answers. And you also have to be willing to accept support from family and friends when you are having a difficult time. All of these things make the process a little easier.
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