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.

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.

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.

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.

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.

My wife is a very dedicated “urban homesteader”. She’s cooking and raising animals and doing a great job at it. And one of the incidental effects of this is that she was at the farm supply store (Wilco where we live) looking at castration supplies for her goats. Being a guy, the topic of castration isn’t my favorite topic, but she had read my previous post on ostomy scissors, so she told me about the blunt nosed scissors there as a possible option.

I went in myself later in the week to buy something else and checked it out, and they look like a very viable pair of ostomy scissors, though I haven’t tried them. They weren’t curved, but they were only $7.99. So if anyone is looking for another pair of affordable ostomy scissors, the farm store might be a place to look at.

Farm supply store

7.99

Castration supplies section

I got one pair of scissors with my “intro package” from Hollister. But I have a “to go” supply kit and an “at home” kit, and only one pair of scissors. I checked with the supply company and they said another pair was $41 and that it wasn’t covered by my insurance. I wasn’t really interested in spending that much for a pair of scissors so I said no. I figured I would just buy a pair of fingernail scissors or something to use in a pinch.

I happened to mention it to my dad, who’s a vet. He said that they weren’t that much money to buy and that he could get me another pair. I took him up on the offer and he sent me a really nice pair of blunt-nosed surgical scissors. They were about $35, but they are very nice.

I just wanted to suggest to anyone looking for a pair of scissors that if their insurance doesn’t cover them, you might be able to find a vet or a doctor, and they could probably get you a pair of decent scisorrs for a reasonable price.

Another tip my dad gave me was to use my thumb and another finger besides my index finger and then use the index finger to guide the scissors where you want to cut.

This may seem like a weird post title, but since I have had my ostomy, I have used baby wipes during bag changes to clean up and dry everything before putting the new bag on. I have an awesome wife. She is very big on cloth diapering, so while she was making a set of cloth baby wipes for my daughter, she made me a set also.

I started out using several of them each time I changed my bag, but now I’m down to usually only using two. They work very well and we just toss them in the wash afterwards and they are ready to use again. It’s a very workable system.

And since we do have a baby around, there are plenty of disposable wipes for when we are traveling and it’s not workable to have a bunch of cloth wipes around. I took several of these and have them in a zip-top baggie for when we are traveling and I have to change the bag. This works very well also. Just use them to wipe everything off and then dry any wetness with a piece of TP and then I’m good to put the new bag back on.

It’s not the fanciest thing around, and I’m sure the medical supply companies have something else that you can buy to use, but this is a very easy and economical solution I have found for cleaning up while changing my bag.