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!

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.

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.