11.24.08
Posted in colectomy, general, ostomy care, recovery at 1:13 pm by Jared
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.
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07.05.08
Posted in ostomy bags, ostomy care at 9:00 am by Jared
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.
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07.02.08
Posted in ostomy bags, ostomy care at 10:33 am by Jared
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 
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07.01.08
Posted in activities, food, general, ostomy care, successful actions at 9:00 am by Jared
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.
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06.29.08
Posted in ostomy bags, ostomy care at 9:00 am by Jared
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
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06.19.08
Posted in ileostomy, ostomy bags, ostomy care at 9:00 am by Jared
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.
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06.09.08
Posted in ileostomy, ostomy bags, ostomy care at 9:00 am by Jared
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.
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