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.

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.

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!

A while back my wife and I were joking about intestinal transplants. She has goats that she milks and a couple of them were butchered, so she was offering me goat intestines as a replacement for my missing colon. It was actually quite funny and I’ve had it on my list of things to blog about since then.

And then the topic of colon transplants came up on one of the Yahoo Groups that I am part of. It’s not a topic that I have researched at all, but I thought there were some interesting points brought up. One of them was that one of the problems with an intestinal transplant is all of the intestinal flora that differs from person to person. I hadn’t thought how that would be a problem.

Another interesting point was the amount of money and effort that’s put towards handling things like erectile dysfunction (otherwise known as “can’t get it up”) dwarfs the amount of money put towards diseases like Ulcerative Colitis and Chron’s and ways to handle them. Though I must admit that the attention and research has increased over the last few years.

Anyway, if they come up with a way, I’ve got a place I can get some goat intestines! Who knows, it may be how we make our fortunes–goat intestines to help those who are “intestinally challenged”!

The nice thing about not having a colon is that eating beans isn’t a problem. I just thought of this the other day when we were having beans. They don’t have time to sit there and ferment. No farting. I’ve never had much of a problem with beans before, especially the last few years of having UC due to the transit time being so fast, but I just thought it was a funny thought.

This isn’t really an issue for women, but for a guy it might be something to listen to.

For the last several years of having UC, I was going to the bathroom often, so I would just sit down and any pee that I had stored up would come out. It wasn’t much as I was having a hard time absorbing water, but I got used to just sitting down to pee. Now that I have an ileostomy, I still sit down to pee almost always. It’s just easier that way. I can both pee and empty my bag, even if it’s not “full”. I guess it’s more “manly” to stand up, but at least I don’t get yelled at for leaving the seat up!

I know it’s weird for a twenty-five year old male to have hot flashes. But a couple of weeks ago (about two months after my surgery), I started having these periods where I would just have to stop and wait for a minute while whatever mental thing it was passed. When it first started, these “episodes” were preceeded by my skin getting all read and hot. I thought they were quite weird but got used to them enough that I didn’t have to stop and wait them out. But they had me a bit concerned.

So the next time my mom and I were talking on the phone and she asked how I was, I said that I was doing well except for these little spells. I didn’t figure she would have any input, but she said “oh, that’s a hot flash”. I was sure it wasn’t, but the more I explained the symptoms, the more she said “that’s a hot flash”. So I guess I have more in common with middle aged woman than I thought.

Luckily the hot flashes only lasted about three days before whatever hormones were at work balanced out again. My hormones must have been (and still are) in a major state of flux since coming off the Prednisone and whatever else I was taking as well as just being so depleted.

Welcome to OstomyMan.com. My name is Jared and I’m just getting started on this blog. I had Ulcerative Colitis for nearly a decade before I decided to have a colectomy and an ileostomy. While I had Ulcerative Colitis, I can honestly say that I tried just about everything to get and keep it under control. It worked off and on for quite a while, but it finally became too much once I had a baby (March 2007) and things really showed their true colors. I had pushed too long and too far without getting the situation handled, so now it was time to terminatedly handle it so that I could get back from the zombie like state of lethary and become a useful, productive member of society, a pleasant husband and an active dad.

When I was deciding whether or not to have the colectomy and the ileostomy, I found that there wasn’t a whole lot of information available about the day-to-day effects of having that surgery. The nurse gave me a book to read (Alive and Kicking by Rolf Benirschke), which did give me some idea and I really appreciated reading it. And after I had my surgery, I joined a couple of Yahoo groups on the topic and that has been very helpful too. But I didn’t find these things until the very end of my Ulcerative Colitis and after my surgery.

So I thought I would try to help fill the void for anyone that might be going through Ulcerative Colitis or facing a potential ostomy (whether ileostomy or colostomy). I figured I would let people know what I had tried, what I had figured out, what’s going on and how things continue to go in the future. It’s just going to be my experiences (and anyone else I have post), but I think it might be useful to someone facing these unpleasant situations and looking for real, down-to-Earth specifics. Hopefully it will help shed some more light on these areas.

P.S. I’m just getting this blog up and running, so there will be some structural changes or the next little while as I get it set up how I would like it.