OstomyMan

I figured I’d take the opposite tack with this post since I don’t have everything figured out about how to extend wear time, but I have figured some things that seem to reduce the number of days each of my bags lasts.

First off, I should start out with reiterating that I use one-piece bags for a number of reasons, but basically because I like them better and have had better success with them.

So here’s my list of not-to-dos if I want my bag to last longer:

1) Let the bag fill completely with gas. Basically this builds up the pressure and the seal is going to be the weakest link, so even if it doesn’t cause a blow out or a leak, it can weaken the seals hold by letting the liquids start to get under.

2) Wear tight clothing across the bag. This seems to happen to me more when I wear jeans than anything else, but if I wear my jeans and belt too tight, the contents of the bag are trapped at the top and seem to wear away at the seal and so the bag doesn’t last as many days.

3) Play with my 1 1/2 year old daughter a bunch. This one isn’t something I’m willing to avoid, but I’ve noticed that when my wife and daughter are away visiting family or I go out of town for business, my bags tend to last longer. I can only assume this is because my daughter loves to jump on my lap and be held and that these pull on my clothes and thus pull on the bag and weaken the seal.

4) Get a bad batch of bags. This one isn’t really avoidable since you don’t know you get a bad batch until you get them. I’ve read online that you can usually call up the company and get them to replace the batch of bags for free, but I haven’t tried this yet, since I have only experienced this twice. The first time I had no clue and I’m just now figuring out that this last batch is in fact not holding up well.

5) Extreme sports. I went white water rafting and basically had my bag fall off so that I was holding it on for the last part of the trip. That wasn’t a whole lot of fun, but since then I’ve learned that there’s water proof tape and I’ve come up with some other ideas, so I’m definitely not planning to let this be a stop to me having fun.

I’m sure I’ll learn more ways to screw up with my bags and to make the wear out faster, but I think those are the main ones I have come up with so far.

Ok, this is sort of to justify why I have been so light on posting over the past month. I’ve been really busy. But it’s not just a justification. It’s also a success. I’ve been REALLY busy with work and family and everything over the past couple of months and it just keeps increasing. I love it. I haven’t been able to do this much in a long time. I haven’t been able to do things with friends, be a husband and a dad as well as do my work with computers. It’s great. The days of being limited to activities that were pretty low key and were located with easy access to a bathroom are gone.

I’m free to do what I want again, though numberswiki.com

it is taking a bit to get used to it again, so that’s where the blog suffering comes in. But I’m determined to get some more organization into my life over the next couple of weeks. And I just found out that I actually have several people subscribed to this blog, so that’s a real motivation because I really want to communicate with and help anyone that might have colitis or an ostomy so that they too can live a full life (either successfully avoiding the ostomy surgery or coming back afterwards).

So here’s to a renewed period of posting. And please make comments and ask questions (you can email me directly at jared [at] ostomyman.com if you don’t want to post for everyone to see.

This last weekend I headed out with some friends to go rafting. For more details about the trip itself, you can read about them on my personal blog here. I actually had a really good time despite the fact that I had my first real problem with a bag that I was unprepared to handle. We camped the night before and that went really well. And my stoma behaved itself very well the whole time. I had very little output unless it was an appropriate time when I could use a bathroom.

I didn’t really know what to expect, so I didn’t bring my extra supplies on the boat with me (dumb move). But then I got in some water fights and was actually thrown overboard with another guy and somewhere during that the seal on my bag started to come undone. There were still a couple hours left to go and it wasn’t that bad so I just wiped it off a bit and pulled my swimming trunks over it to contain anything. After a while it started to get worse and leak a bit more. Some got on the inside of my shirt. Anyway, when we were out of the boat, I ended up just holding my side to keep the bag on and to hide the small spots that were showing through. It definitely dampened the fun a bit for the second half of the trip, but was more of a learning experience than a turn off from doing it again.

So here’s what I learned from my trip. First off, bring a pillow because sleeping on the ground without one just plain sucks. Two, physically it wasn’t a problem at all. I didn’t get sore or anything so that wasn’t an issue. Three, make sure that I reinforce the seal as best as I can with tape and whatever else to help it hold on and to keep the water out. Four, bring “emergency supplies” on the boat just in case they are needed. It would have been a non-issue if I had had my extra supplies as I could have easily changed my bag quickly behind a bush when we stopped (I was already going back there to wipe things off and make sure my bag was as empty as possible). And finally, even with a “blow out”, it’s still possible to have a good time and not ruin everyone else’s time.

So, basically I’m back in the game for physical activities and am on the list to go again next year!

We’re coming up on 6 months here in a few days. I had my ileostomy surgery on February 27th, so in 3 more days it will officially be my semi-anniversary as an ostomate. I figured I’d take a look back over the last while and see if I could document some of the things that I have gotten back in my life in that short span of time. So here’s a list of things that I was having a hard time doing that I’m now able to do like a normal person in no particular order:

1. Be a dad. I wasn’t much more than an ornamental dad before. Chris had to do everything, but now I can keep up with Daphne (at least as much as any normal person would be able to keep up with a VERY dynamic little one year old). I can play and put her to sleep and take walks and play with her dolls and eat with her and go places with her and do all sorts of things without having to constantly stop to rest or go to the bathroom.
2. I’d say I’m a much better husband again. I’m able to be active and do things with Chris and Daphne. I’m more interested in activities and am able to help out around the house, plus I’m able to keep up those those other husband activities that shall not be named since my parents both read this blog 🙂
3. I went golfing. It was on the short nine,  but hey, it was golfing again and it was fun. Plus I have gone to the driving range a couple of times and I plan to continue.
4. I’ve been swimming several times in our local outdoor pool this summer with Daphne. I was a little hesitant since I didn’t have a swimsuit, but I got a special one with a higher waist and I’ve been doing fine. And it helps to have a little one to take swimming because I end up carrying her or her floaty thing so no one would even notice that the front of my shorts are hiked up like Erkle on Family Matters.
5. I can watch a whole movie without having to go to the bathroom in the middle–though I can’t really make it through one with Daphne, but that’s a different story.
6. I have gained weight. I’ve never made it over 135 and have had trouble making it over 115 for the last few years, but since the surgery I’ve gained a bunch and am now stably at 150.
7. Eaten popcorn, broccoli, ice cream and all sorts of foods that were taboo before. Eating has become a pleasure again rather than the bi-hourly necessity to stay alive.
8. I traveled to New York. I had traveled before when I was sick, but it was really hard. This time it was much easier and more pleasurable, and not a journey between bathrooms.
9. I can work a full day easily, whereas before five hours was starting to push my limits.

I’m sure there are plenty more, but that hits the highlights. Overall I’d say it was a very successful decision to have the surgery!

It’s a funny side effect, but I think now that I am feeling better, my eye sight is returning to normal. I used to have really good vision. My mom used to call me “Eagle Eye” because I could see things very far away. But as my health deteriorated, so did my eye sight. Last December I even had to get classes (though I must admit that I mostly wore them for driving and even then not all that often). It was especially bad when I was tired.

I somewhat blamed it on working at a computer all the time and not getting outside. And this may have had something to do with it. But I also think that my body was just so shot that my eyes weren’t getting the nutrition that they needed to stay healthy. But now that I am healthy, I’ve noticed that my eyes are getting better and my glasses don’t necessarily seem correct. I’m sure they’ll continue to get better since I am outside doing a lot more activities now and also since I am now absorbing nutrients instead of just feeding them down the drain to th sewer.

I guess this means I’ll have to go in and get my eyes checked again sometime and get some new glasses. But I think I’ll wait a while and then maybe I can get away with officially not needing them instead of just ignoring them!

Today my wife had to dash out of town for the evening so I got to fulfill the promise to go swimming with our daughter. And since I have my new ostomy swim trunks I was up for the challenge. So we went swimming for a few minutes until my daughter wanted to get out and go on the slides, but all went well. It did help a bit to have to carry her and her floaty toy as sort of a gradient of having people see me with my shirt off.

There were really only two awkward things about the whole experience. One was that I had to wear my shorts about two inches higher than I normally wear things so it felt a little bit funny, but not extremely so and once your in the water, it doesn’t really matter anyway. The second was something that I’m sure even normal dad’s have to worry about: kicking baby feet. After a few minutes in the water, I looked down and noticed my shorts had come down a bit and were showing my bag. I doubt anyone noticed since we were in the water, but my daughter had kicked my shorts down some. But no big deal.

So basically I’m back in business as far as swimming goes. Maybe I’ll start swimming regularly (yea, I know, fat chance, but I do like to swim so at least it’s a possibility again).

It’s been a long time since I’ve really been swimming. I used to love to swim, but as things got worse healthwise, I was less and less inclined to go. But my one year old daughter really enjoys going to the pool and now that I am feeling better, I like to go also.

I haven’t actually gone swimming yet, but I have gone to watch, since I felt a bit awkward taking off my shirt with a large bag attached to my abdomen. But that’s about to change. I just got my special ostomy swimsuit from White Rose Collection, so now I’m set to try it out in the next few days! I’ll look a little bit like a dork with my shorts hiked up a bit too high, but the shorts have a higher waistline than normal shorts so it’s not quite so bad. Plus they have a special netting pocket to hold the bad so it doesn’t float around and become obvious.

And my hat’s off to Dave and Tanya of White Rose Collection. They have amazingly good customer service. I couldn’t quite figure out what size to get and so emailed them. I got a prompt reply and they had gone and specially checked how large the waistband stretched to. So I ordered them, but it turns out I picked the wrong size. It wasn’t really the waist that was the problem, but I am 6 feet tall so the shorts just weren’t long enough. I emailed them about it and they said to just send them back and they would exchange them. And lo and behold a little while later I have them. If I had really been thinking it through, I probably would have gotten even one more size up due to my height, but the medium should work out just fine.

I searched for quite a while on the interent and only found one other source for men’s ostomy swim suits–women’s ostomy clothes are much easier to find–but the White Rose Collection’s web site was much more professional, included more data about what I was getting and sizing and was generally more user friendly, much like the owners. So basically, if you are looking for any ostomy clothing (including swimsuits), I recommend checking them out.

The other day I went to play laser tag for my little brother’s birthday party. It was the three adults versus about six little kids. I actually had a very good time playing, but the next day I was quite sore. My thighs haven’t done much work in the last few years with being sick and being a computer programmer. And I still haven’t recovered.

But today we went out to Delphi for the 4th of July softball tournament and to visit with friends and let my daughter hang out with her grandma. I didn’t really think I would play much because of how sore I was, but when I was actually playing, the adrenaline must have pumped in or something. I was able to run without much of a problem. But after the games were over, it was back to being quite sore whenever I had to walk up stairs or a hill or stand up.

Basically, this is just another sign that it’s about time to start getting in shape. I’m feeling well enough to take on some more active activities, but I think I’ll need to do it on a gradient since it’s been so long since I’ve been in good physical shape.

And just as a side note, I’ve wanted to get a tan for many years. It’s the one thing I haven’t been able to pull off since I left high school because I was either working or sick and didn’t feel like going out. But I have successfully sunburnt myself today, so things are looking up in that department also. Maybe by the end of the summer, I will have my tan!!

It’s been hot recently and so I have been wondering if I would have problems with my salt and potassium levels, since that can be a problem for some people with ostomies. One of the colon’s jobs is to absorb minerals and since I don’t have one anymore, I figured that could be a problem.

It’s also come up in one of my ostomy discussion groups lately. Some of the people have low potassium levels and so have to take pills and some are just fine. I think it goes to show how much have an osomy can vary from person to person.

Anyway, I’ve always known that the proper balance of salt and potassium is needed to handle hot weather or a lot of exertion well, since sweating can release it. And I know salt holds the water in the cells and that potassium helps it get out. So my plan of action over the past many years, though my colitis, is that if I noticed myself starting to get a bit puffy, or my skin starts to feel like it can’t “breathe”, I just took some potassium tablets. And that seemed to be enough for me. (Salt is very rarely a problem for me because I am a big salter of my foods–I really like the stuff).

That same principle seems to be working well for me with an ostomy. Ever since my surgery, I’ve been eating more bananas, just because I crave them slightly (and we always have a bunch of them around since my daughter really likes them also). I eat about one a day usually. And that seems to have pretty much handled any “potassium depletion symptoms”.

There have been a couple of days lately where it has topped 95+ degrees, and I started to feel that “swollen” feeling, so I just took about 500mg of potassium (just general store brand, nothing special) to “head it off at the pass”, and I was fine for the rest of the day.

I mentioned the other day about needing to update my wardrobe a bit with my new state of health, but I didn’t mention that I had started already. A couple weeks ago, I bought new shoes. That was pretty exciting! I don’t think I have had a new pair since high school (almost a decade ago), since I didn’t really need them with my sedentary job and minimal active activities.They aren’t fancy, but after traveling to New York and walking everywhere, my feet hurt like mad, so I went and picked up some new shoes. So far I’ve only worn them a couple times, like when I went golfing, but it’s nice to have the option to have something comfortable to wear now that I can be more active.