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.

When I first got my ostomy back in February, one of the main things I was told to be careful of was food blockages. I was told to make sure I chewed everything very well and I needed to be careful of fibrous foods like mushrooms and lettuce.

My wife and I were a little bummed because we are really big fans of mushrooms. So I behaved myself for a while and didn’t eat large quantities of fibrous foods. I tested the waters cautiously, but never really had a problem. So for almost a year, I happily chowed down on whatever I felt like eating. I did usually chew pretty well, so I guess I did well enough let everything digest well.

But then last week, I finally had my first experience with a blockage. It wasn’t an extreme case like I have read that many people have with excruciating pain, but it was annoying. I felt sort of sick to my stomach for most of the afternoon and evening. I didn’t want to eat anything. I tried laying down, but it didn’t do much good. I read that I should drink a lot, so I drank as much as I could.

And I read everything I could find on the internet about the symptoms of a blockage since I wasn’t sure that’s what was going on. I found the full range of suggestions from drink to go to the hospital. It didn’t do me much good and just made me worry.

I think I finally did drink enough and things were able to finally digest enough (I had gobbled some mushroom-laden stuffing earlier) to pass through. Once the blockage passed, I immediately felt better and was good to go again.

So, while my experience didn’t compare to others I have read about, it did remind me to chew better because it was quite unpleasant.

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.

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 don’t really have much of a problem with gas and the bags that I like don’t come with filters (to let the gas escape out), so this hasn’t been too much of an issue lately. But when I was playing around with different bags and trying out various brands and styles, I discovered a very useful fact that I figured I should reiterate.

If you have a bag with filters, make sure they don’t get wet. That pretty much ends their life as a filter and you might as well not have them.

I’m not sure what they are made from, but once it gets wet, that seems to be the end of it. Luckily most of the bags that I got with filters came with little stickers to put on over them to keep the water out while bathing. But I hadn’t used filters much and often forgot to cover them up, so after about a day of use, the filter was no more.

So a word to the wise, if you have a size/brand that you like that has filters make sure you cover them up when you are getting wet.

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!