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 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 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 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.

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.

Saturday, June 4, 2011

Another Thing They Won't Tell You....

.....But They Probably Should!

Yes,'s another installment of things they really should tell you at the hospital, or in the patient education materials, so that you won't think you are broken or otherwise slowly dieing when said things inevitably start happening to your person. Let's take it from the top:

Friday morning I finished my run and had a little lunch. I was hanging out with the baby when I felt a weird, kind of itchy, sensation in the area of my wafer. I knew before I even looked what I was going to find. Yep, there it was. A tiny bubble at the edge of the tape with brown yuck peeking out from under it. I'd lost my seal and had no idea why. I had plans to change things out that afternoon while the baby napped, but it looked like I was not going to be able to wait. I plopped the baby in the hallway outside the bouncer in his baby jail...err, exersaucer thingie and got my supplies and things ready for my shower. (Note: said baby screamed his adorable little head off the entire time I was engaged in this process! Eep!)

Once I removed the old pouch, I could see that the top half of the barrier ring was basically gone. I was pondering this and it got me to analyzing the events of the night before. We had gone to dinner with both boys. I ordered a half chicken cobb salad and some soup. The kids were acting a bit crazy, and I found myself attempting to hurry through my meal so we could get out of there. Rule #1: ostomy folk CAN NOT rush through a meal. Ever. I know better than this, so don't ask me what I was thinking. Next time I will just get a to go container and take the stuff home so I can eat at my own pace. At any rate, I woke up at about 3:00 a.m. with some pretty serious gut pain and a suspiciously empty bag. My first thought was a partial blockage. I got up, went to the bathroom, and found the bag wasn't completely empty, but just a little liquid was in there. I did what I was supposed to do and drank some warm water and massaged the area around the stoma for a little while. That seemed to get things moving again and the pain subsided a little bit, so I figured I might as well go back to sleep while waiting to see what happened. I woke up in the morning with a full bag and feeling much better and that was the last I thought about the blockage.

As I was thinking all this over and cleaning the area around my stoma, something happened that thoroughly freaked me out. Pedro started moving a bit, and then output started coming from the base of my stoma. I quickly rinsed it away with the shower spray and waited. It happened again, and more this time. It was also coming out of the regular opening, too. I was confused. I just kept washing it away and waiting and getting more and more freaked out when it kept coming back. It quickly became obvious to me that this was the culprit behind my lost seal. When this stuff was coming out right next to my skin, it was forced under the barrier ring and eventually ate it up and oozed it's way right under the tape. What I couldn't figure out was why on earth this was happening. For a minute I wondered if the blockage had forced output up under my skin somehow and now it was oozing out. Then I realized I would probably be in tons of pain if poo was just randomly floating in my body. I then thought maybe the blockage had blown a hole in the side of the stoma or something, but that didn't seem to make sense either. Surely I would have felt something like that happen? I couldn't figure out what was going on, but it seemed like it certainly wasn't a good thing. I decided I was going to call up to Cleveland Clinic after I got pouched back up. I then had all of these awful visions of them telling me I needed to come up there and get a stoma revision. In my head, I practically had myself checked into the hospital and was wondering how many days I would have to stay. I was not a happy camper.

I want to take this opportunity to say that my surgeon's nurse, Marlene, is one of the most awesome medical people on the planet. When I got her on the phone, she asked what was going on and I told her I was freaking out and why. She explained to me what was going on in a way that I could understand and I quickly realized that I was not going to die or need surgery. Hooray! She asked a few questions about the blockage to make sure I knew why it happened and how to prevent it (yes, get a babysitter when I want to go to dinner!) and then a few other general questions just to assess how I was doing. She did not make me feel stupid or crazy for being scared half to death about what had happened. Marlene rocks!

So, what did she say? Well, I'm glad you asked. The type of ileostomy I have is called a loop end ileostomy. So this means they basically fold the intestine in half and cut almost all the way through that fold. You end up with a big hole (which is what I know as my main stoma opening) and then a smaller hole. That smaller hole goes to a small piece of intestine (1 to 3 inches worth, depending) that is "downstream" from the stoma opening. Now, typically this smaller hole doesn't do much except for occasionally secreting some mucus. However, sometimes weirdness can happen like what I experienced if output gets into that small piece of downstream intestine. There are a couple of ways this can happen, but the one that likely applies here is that the blockage, and my massaging to get things moving again, may have forced some output past the stoma opening and into that section. As the intestine does it thing to force the contents out, it comes out of both sections. This is a good thing, unless you don't expect it to happen and it causes a seal loss and potentially loss of your mind!

When I pouched back up, I left a little extra space around there so if it continued to output it would go into the bag and not under the wafer. I will admit I was really nervous about how the seal would hold up for this morning's group training run. To give myself a little peace of mind, I bordered the whole wafer with my Hy-tape (waterproof medical tape). Happily, nothing bad happened. I'm thinking I will change out the appliance tomorrow so I can see how it's holding up and get an idea as to if that section is done doing it's thing. I guess it's more out of curiosity than anything, but I'll feel better if I get a look at it sooner rather than later. I'm also thinking it's time to quit putting off ordering those Sure Seals I've been thinking about. That seems much more secure than the tape I used today.

Wednesday, June 1, 2011

Little Things Mean A Lot

I ate strawberries this week! I also ate raw veggies (green peppers, onions, cucumbers without the skin and seeds). I've graduated to being able to veggie up like normal on my favorite subs at Subway. These things thrill me like you wouldn't believe! Being able to add these extra fruits and vegetables back in is going to make staying on track with my weight loss efforts that much easier. I still have 17 pounds to go before my follow up appointment in September. I can do it, no problem!

On the running front: I ran 21 miles in May! Considering I didn't expect to be able to run at all until sometime in June, this is huge! Last Saturday I did three miles for the first time. The first two were out with the run/walk group and then I ran the last one solo on the track. I am solidly below my pace threshold for returning to my regular pace group from last season, so I'm going to join them this weekend. I am so excited, I can't wait to be 100% back. I can't remember the last time I felt this strong in my running. I'm loving it though, I can tell you that much!

I think I finally resolved one little nagging detail that has been eating away at me. I really wanted to be able to carry a pouch, wafer, and some wipes on long runs just in case things really go wrong and I get caught miles out and have to do an emergency change. I realize the odds of this are really low, but it's been bugging me that I'm not prepared for the possibility. Monday I bought a Fuel Belt and killed two birds with one stone. Firstly, I will now have four of the eight ounce bottles on my person so I'm carrying extra fluids. Secondly, I bought an additional large pouch for the belt that is the perfect size for an emergency changing kit. Now I can carry what I need and hope I never actually have to use it.

I sat and thought really hard about the possibility of a pouch malfunction while on a training run or running a race. Here's the conclusion I came to: shit happens. Yes, that's right. To everyone. Hopefully only at convenient times, but it doesn't always work that way. In the midst of thinking about this, I remembered the 2005 London Marathon when Paula Radcliffe had to decide between giving up the lead and copping a squat on the side of the course to take a quick poop. I'll tell you this much, she ended up winning. If untimely poop can happen to a world class athlete of Paula's caliber, it surely can happen to me. Though I am in no danger of winning a marathon anytime soon, I know I can handle and overcome any unwanted poop situation with the same tenacity as Paula. I am not going to let the fear of something that simple hold me back or slow me down. I'm just not. So I'll carry my supplies while hoping for the best and being prepared for the worst. And then I'll just forget about it and run!