OstomyMan

I’m sure I’ll revisit this topic a bunch of times over the next couple of years, but right now I don’t think I’m going to get a J-pouch right now. Maybe some day, but right now it doesn’t seem like the correct decision for me.

In talking with the surgeon about it over the last many months, he told me that pouch’s have about an 80% success rate, but that they don’t really improve the quality of life for the person since the removal of the colitis is really what improves the person’s quality of life and after that, having either a bag or a pouch is just a matter of preference.

So far I’m quite happy with the pouch. It’s easy to deal with. I’ve only really had one major problem and that was when I went rafting for the first time. I guess getting a J-pouch could simplify things a bit since I wouldn’t have to change bags, but I would still be going to the bathroom as many times so that’s really only a small improvement. And I don’t think it’s worth having to take the time off of work or the expense of a surgery.

And there’s no guarantee that it will work. During my last sigmoidoscopy, things are still very inflamed. And that’s almost a year later. So even if I decide to do the surgery, I think it will be in a couple years after I give what’s left of the colon/rectum time to heal or at least calm down.

Life is good right now. I am healthy. I have a great little girl and a wonderful wife pregnant with the next one. I have friends and can once again do things with them. Basically I’ve hit the reset button and right now I don’t want to hit it again.

Back in November, I had to get my first major “check up” since the surgery back in February to make sure I didn’t have any pre-cancerous stuff going on. I was scheduled to get a flexible sigmoidoscopy. One nice feature of getting a sigmoidoscopy after having a colectomy is that there is no prep. I ate lunch right before I came and it was just fine.

It was sort of funny when the nurse asked when the last time I had eaten was. He was rotely going through the questions and to double take when I said that I had just eaten lunch. But then he realized that the two ends of the intestine weren’t connected anymore and off we went with the rest of the questions.

Then I think that was about the last fun part of the procedure. Despite having no prep, having a large tube stuck up your butt and then having a bunch of air pumped in isn’t very much fun. Though they did move a monitor so that I could watch what they were seeing, which was neat.

It turns out that I have hardly any “normal” intestine left down there. There were only a couple of little bumps where there should have been a whole bunch of “villi”, the wrinkles that absorb everything. I guess those bumps are called “pseudopolyps”, and were actually the last few remaining portions that were relatively “normal”. But he needed to take biopsies, so most of those are gone now too 🙂

It was interesting to see everything. It was really the first time I had been able to watch while they did one of these (it was my third, not counting colonoscopies). But I think it reinforced my idea of not getting a pouch right now. Maybe sometime in the future, but right now things are still too inflamed and I don’t think it would go over well.

So what was the final determination after looking in there? I have colitis! Big surprise. And after waiting a month for the results of the biopsies (some breakdown in the line happened because they were actually done after a week), I called up and found out……that I have colitis. But that’s all I have so that’s good. No cancerous stuff to deal with and I don’t have to go back to the doctor again until May (and that’s just for a regular talking appointment, no scoping).

On Thursday I went back to OHSU to have my first real check up. I met with the surgeon about 3 months ago, but he didn’t do much besides just talk with me and make sure everything was going well. So on Thursday I went back and got a “flex sig” (flexible sigmoidoscopy).

One aspect of the procedure that was great was that I had NO prep to do. I didn’t have to starve myself or not drink or take that terrible stuff that gives you wild diarrhea. Nothing. Just showed up, answered the pre-procedure questions and went in to get scoped out.

But I must say that besides that benefit, it still wasn’t a really pleasant experience for me. It’s been about 9 months since my surgery and my rectum is just now starting to calm down. So having a hose stuck up there and a bunch of air pumped in just didn’t make me smile. I did get to watch, which was cool, but my rectum still looks pretty bad, which made sense to me.

The doctor took some biopsies to make sure there’s nothing pre-cancerous going on, but as he was in there trying to get them he was explaining what was there to me. I guess I have virtually none of the normal lining that should be there. It’s totally flat other than a rare bump. Those bumps I guess are called “pseudo-polyps”, though he said they were really the few places of my colon (rectum) that were even close to normal. And he ripped one or two of them off for the biopsies so I have that much less “normal” lining.

I can totally see why things moved through so fast and why there was so much blood for so long. There was nothing left to slow anything down or to absorb anything. And pretty much the whole surface was covered with worn away spots/ulcers. The slightest touch and they started bleeding again.

Oh well, unless the biopsies come back with a problem (which I doubt), I’m going to stick with the bag. At some point in the future I might decide to have the “reversal”, but for now, I think it’s smarter to just continue doing really well with the bag than go back to the uncertainty of having a pouch created out of a rectum that still looks really beat up.

So hopefully that’s the last I have to worry about doctors for the next 6 months until my next check up (just an office visit). But it will be interesting to get the results of the biopsies now that I have been awake to see what the rest of my colon looked like.

I’ve been thinking about writing this post for a few days now, but we are visiting family in Eastern Oregon now and my wife mentioning the cold toilet seat just pushed me over the edge.

I would like to file a formal complaint that the people that design toilets don’t know what they are doing. Sure they usually work fairly well and sometimes they have fancy features like “auto flush”, but come on. There’s so much more that could be done to make the toilet a more pleasure fixture in a house.

It seems obvious to me that the people that design toilets never had any kind of digestive problems nor were they big “toilet readers”.

Here are some of the problems that I see with toilets and some ideas about them:

• They get cold–We can heat floors in the dead of winter, but we can’t figure out how to make a toilet seat that doesn’t freeze you. The best alternative out there is a plastic one, but those often get scratched up and gross. I’m sure there are materials out there that are “warmer” and resistent to wear and tear.
• Some have too much water in the bowl and some have too little. The former can causes splashes and the latter can cause things put in the toilet not to be flushed down (especially when combined with a weak flush mechanism). This latter one is more of a problem for me now with my being “re-plumbed” and emptying in the front.
• They are usually too weak to conserve water or so strong they splash.
• Generally speaking, they aren’t all that pleasant to sit on.
• They are a real pain to clean–has anyone ever really stuck there head in to make sure that under the ring around the bowl is really clean?

That isn’t to say there aren’t ANY good toilets out there. I have seen a few. But they are very rare. I would think that a device that every human in the industrialized world uses should be better designed. I guess the companies that make them figure they have the market cornered. I’m sure there are ways to design the bowl to still keep the aesthetics and physics associated with the current designs on the outside and the inside to allow minimal water to flow around the entire bowl without splashing. And I’m sure there are more ergonomic designs for the seat.

Anyway, I’m just putting that out there as someone who has spent more than his fair share of time running for and sitting on toilets.

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.

My wife was talking with her friend a while back about me having another kidney stone (hopefully just a hold over from the Prednisone) and he said something that I just found to be hilarious. He asked her something like “isn’t he like bionic more info

elimination man?” I thought that was great. I’ve humorously used “prosthetic colon” before about my ostomy bag, but I think I might switch to having a “bionic colon”. It probably doesn’t fit as precisely with the dictionary definitions, but it just sounds cool!

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.

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!

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.

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!!