OstomyMan

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!

For the last several months before I had my surgery, my feet swelled up. It was minor at first and we tried various things to solve it, but I was doing so poorly that even working from bed with my feet elevated the whole day didn’t solve it.

TPN helped and my feet went down in size, but it didn’t totally handle it. Compression socks weren’t much good either.

But since my surgery, it’s been much improved. I have only gone through two periods of feet swelling. Both about two days and both solved by taking some salt and potassium (or at least that’s what it looks like solved them).

Other than those two incidents, it’s been smooth sailing.

A while back my wife and I were joking about intestinal transplants. She has goats that she milks and a couple of them were butchered, so she was offering me goat intestines as a replacement for my missing colon. It was actually quite funny and I’ve had it on my list of things to blog about since then.

And then the topic of colon transplants came up on one of the Yahoo Groups that I am part of. It’s not a topic that I have researched at all, but I thought there were some interesting points brought up. One of them was that one of the problems with an intestinal transplant is all of the intestinal flora that differs from person to person. I hadn’t thought how that would be a problem.

Another interesting point was the amount of money and effort that’s put towards handling things like erectile dysfunction (otherwise known as “can’t get it up”) dwarfs the amount of money put towards diseases like Ulcerative Colitis and Chron’s and ways to handle them. Though I must admit that the attention and research has increased over the last few years.

Anyway, if they come up with a way, I’ve got a place I can get some goat intestines! Who knows, it may be how we make our fortunes–goat intestines to help those who are “intestinally challenged”!

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.

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!!