OstomyMan

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.

Having insurance is definitely a pain. And I hate having to write the check every month (or every quarter) to the insurance company. But it’s one of those expenses that gets paid no matter what. It’s really nice to have when you need it. I’m very happy that I have had health insurance, even though my health insurance doesn’t cover anything remotely “alternative”. Over the past many years, I have been paying in and not really going to MDs enough to actually surpass my deductible. But it has been nice this year since I went in the hospital once before and then again for my surgery. And it covered all of my TPN (basically IV nutrition), and has so far covered all of my ostomy supplies for this year.

I know that next year it will be back to the same old thing of not going to MDs much and probably paying more than I get, but this year it has made up for the past many years. I had a friend that had to have a surgery without insurance and it took him YEARS to pay it off. And despite the fact that the hospital I went to (OSHU) was very willing to work with us on the money end of things (the actually wrote off everything out of pocket above our deductible), not all hospitals or doctors are like that.

And I have another friend who isn’t really able to do all of the tests and such that he should because he doesn’t have health insurance it they are TERRIBLY expensive without the insurance company telling them how much they can charge (and even that is really high).

The one thing I might change though is the company I have my insurance through. I’m not going to switch until the end of the year (since I have exceeded all limits and everything is basically free for the rest of the year). But in December I’ll probably start looking at what it would take to switch to another company. My wife has Pacific Source (we live in Oregon) and she really likes them and they cover more in terms of alternative care (like chiropractic, NDs, etc.). I think that would be just about right since I would rather see a more holistic care provider than an MD for routine care.

Since I have already maxed out my insurance deductible and out-of-pocket expense limit with my first hospital stay in January and then my surgery in February, my insurance is now paying for everything else that happens this year. And that includes my ostomy supplies. So I have decided to stock up. I still haven’t fully figured out what is the “be all, end all” bag for me, but right now I am using a one-piece, pre-cut bag, so each month I order the maximum number that I can, along with the paste and skin prep wipes.

My reason for doing this is that I’m not all that excited about paying for the supplies next year. I’m not necessarily poor, but I don’t want to waste my money buying ostomy supplies if I don’t need to.

My insurance plan lets me get 20 bags per month and 2 tubes of paste and some number of skin preps. But I am frugal with bag changes and try to make each bag last as long as it can before I change it. (I’ll have to actually track it, but I figure it’s about 4-5 days between changes). So I end up using less than half of my bags, and I just put them away so that I can use them later. They don’t technically expire for something like five years.

And I asked one of the representatives at my supply company if the paste expired and she said that as long as I don’t open it, it should be good for a long time. So even though I have only gone through one whole bottle of paste since my surgery in late February, I keep getting those too and just putting them aside.

Hopefully, if all goes well, I’ll have all of my supplies for all of next year and will be able to make it through the whole year without having to buy any supplies.

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!!

I woke up this morning with my bag about to start leaking. This has only really happened a couple of times before, but now I have a system that works pretty well as long as I follow it.

While I sleep, my bag usually starts to fill up with gas. Some days it’s faster than others. And it seems to happen even if I use a filtered (vented) bag since I am laying down and the contents of the bag often sit right in front of the filter. The bag sometimes fills up with gas during the day also, but I try to follow the same principle: empty it before the pressure starts to pull at the seal too much.

So basically I have a “ballon bag alarm clock”. When it gets too full of air, I go to the bathroom and empty it out. This usually works out just right as it’s about time to wake up anyway. But if I ignore it for too long, the air pressure builds up and starts to pull at the seal, which is what happened this morning.

As long as I follow that simple idea, I usually get several days of wear, but if I ignore the bag for too long and let the pressure build up, disaster looms just up ahead 🙂

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.