OstomyMan

It’s weird having a spot that doesn’t feel. There’s a spot just below my ostomy on the “inside” (side closest to my belly button) that doesn’t have any feeling. If I push it, I can tell from the pressure change on surrounding parts, but about a 2″ square is still numb. This was explained as a possible side effect of the surgery and that the feeling might come back. But not so far.

It’s almost been a year and it’s still numb, but it’s not really a big deal. I hardly ever notice it unless I’m taking off my bag. For whatever reason, pulling the last bit of tape/adhesive off of that spot actually hurts. It’s weird. Any pressure just feels numb, sort of like when you have dental work done. But when the skin is pulled by the tape it hurts. Don’t know why that is, but it’s a small price to pay for the dramatic improvements since the surgery.

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.

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.

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!

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!

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!

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 was warned before my surgery that I might have a numb spot on my stomach afterward. I wasn’t too worried about it, especially with how I was feeling, and since I figured the feeling would come back eventually.

It’s now been approximately four months since my surgery. Everything else is pretty well healed up and I am able to do what I want. But there’s still a numb spot below my stoma on the “inside” part of my stomach, meaning between my belly button and the stoma. I guess if you were to take the six pack of stomach muscles (yea, wishing there since I haven’t even started exercising again yet!), I guess you would say the “inside” half of the bottom right one is numb (about a one-two inch square area). It feels sort of like your mouth feels after having your gums numbed for some dental work. It doesn’t hurt, and I can definitely still sense things there, but no real “feeling”. The sensations I can get are probably from surrounding nerves and the changes in other things, like the position of my ostomy bag or shirt, when I’m touched there.

Oh well. I can’t say that I ever really noticed feelings there before, so it’s not really much of a loss. But it is one of the small differences in living with an ileoostomy. And I can’t imagine it would even get better if I decided to get “put back together” since the nerves are already severed.