Six Weeks! Six weeks ago today, I was laying on an operating table having my large intestine removed. Actually, at this time six weeks ago, my intestine was probably already out and my doctor was in the process of building a pouch out of the end of my small intestine. It's crazy to me that you can go through something so major and be feeling this good in such a short time later.
It's definitely a testament to the skill of my doctor and his staff, and how far medical science has come in such a short period of time. That's also my 2nd organ removal in 2 years (gall bladder removed Mar '06), so I hope we're not seeing a trend. It was also my 6th surgery I believe, I had 3 surgeries in high school, reconstructive surgery on my hands after a car accident, and a "surgical procedure" to remove gall stones before the gall bladder removal. Don't I get a plaque or button or something soon?

In walking news, yesterday was raining a lot so I didn't get out there for the first 2 sets, but in the evening the rain had stopped so I got out there in the cold and walked a fast 2 miles.

Otherwise, not much new. I'm starting to think I need to organize this blog a little better. I seem to dump everything under "daily" which I'm not sure is all that helpful. I created another label called "hospital" which I'm hoping to put more details in about my stay in the hospital... stuff that might help other people should they be going through similar circumstances. I haven't filled that in yet though. Soon...

-jk

I finally got out there and measured my walking distance and it turns out I was walking more than I thought. I had intended to err on the side of walking more instead of less and it turns out my 66 lap set was actually 1.37 miles, so yesterday and the day before when I walked 3 sets of 66 laps, I was actually walking just over 4 miles, not 3.

I also timed myself for a correct 48 lap mile and my time was 13.5 minutes which is a much better mile walking time than the 19 minutes for my 66 lap guestimate. I was thinking of trying a set with my ankle weights on but haven't done it yet... maybe next time. Of course it's raining too much today to get out there but I'll be out there again soon.

I'm getting a little better at changing my appliance too. This morning it only took me about 25 minutes, which I'm sure is really slow complared to people that have been doing it for years. Part of why it was so slow is because I still have a small raw spot that I wanted to put a little powder on to make sure it heals up quickly. It is getting easier though which is encouraging. Sleeping is getting easier as well although I'm still up twice a night to empty it. That's kind of annoying, especially since I spent sooo many years not being able to sleep through the night and it's just this last 2 or 3 years maybe that I've been able to sleep through the night more often than not. When I was first diagnosed with UC, I couldn't go 2 hours without a trip to the bathroom, day or night. That was rough.

-jk

Another day, another bunch of laps around the pool. Still, walking, still improving, although it definitely is taking some adjustment, that's for sure. I will say this, nothing like having your guts yanked out as a wake up call to let you know where you stand... to let you know who your friends are and who you can count on... to let you know how "thin" things really are and how hard it is to get by when you can't work. It's tough, make no mistake, and things for me have gone surprisingly smooth all things considered, and still it's a challenge.

Medical disability FINALLY came through, in just over a month. I didn't file before I went into the hospital, so I guess it's more like about 3 weeks. Still, that sucks. Good thing I wasn't counting pennies right before, or I would have been screwed big time. Even with the little bit of money I had saved, it sure is incredible how fast it goes out when it's not coming in. Oh, and yeah I don't think I mentioned it before, I have NO idea how people are supposed to make it without insurance. The new "appliances" that the nurse switched me to? Damn, those things are expensive. $90 for a box of 5, that's nuts. Insurance covers some of that in my case, but nowhere near all.

As I said, the laps are continuing. A couple days ago I was up to 54 laps per set when the rain wouldn't let up. That kind of ruined my progression, so I just bumped it up to 66 laps per set, which is what I did 3 times yesterday and once so far today. I've also been really picking up the pace to make it more like exercise and less like a casual stroll. It's now more like a power walk with that last 66 lap set this morning taking just under 19 minutes. That's not bad for about a mile I think.

As far as the next milestones, here's where things stand. I need to have another appointment with the nurse toward the beginning of next month. It's just a check up to make sure I'm handling things ok and to start preparing me for the next leg of my journey, the next surgery. I haven't made that appointment yet, but I'll post when I do. I also have an appointment with the doctor on the 7th to start the process of getting me ready for the next surgery. Not sure what all that will entail yet, but it's supposed to be much less of an ordeal. The main thing though will be checking the j-pouch to make sure it has healed up correctly and there are no leaks and that my sphincter muscles are adequate for the job of holding things in. If all that goes ok, I guess we'll be scheduling the surgery. It's all taking a bit longer than I had originally been told though, which kind of sucks. I was originally told it would be 6 weeks until the first surgery and I'd be out for 8 weeks, so I kind of took that as a hard date. Well, 6 weeks will be this coming Wednesday and I won't even be seeing the doctor until after week 7. I'm not sure exactly how long I'll be out of commission after the second surgery, but I've heard 2-4 weeks depending on how hard I push myself. Given all that, I'm not liking my chances of making it back to work at week 8, which sucks. I'm torn because on the one hand I'm trying to just relax and take things easy and not over do it, but at the same time I'm wanting to get my life back on track and get back to work and all that. I obviously don't blame the doctor for these time delays... I understand they're just rough estimates to begin with and that it all depends on how fast people heal. And, the nurse told me that normally they have you wait 3 months before the second surgery, and that my 6 week schedule was really aggressive. So, while I feel like I'm progressing really good and doing as well as can be expected considering my guts are missing, I still feel the need to rush.

Anyway, that's all for now.
-jk

First off, thanks to those of you that sent me a message that you're reading this... for some reason that helps. I appreciate your interest in my struggles. There are plenty of things I think about writing here and just don't feel like sitting here to write them. Or by the time I am sitting here, I just don't feel like thinking about them anymore.

I finally had a follow-up appointment with my ET nurse on Monday and that went really well. She really is a nice lady and very effective at putting your mind at ease dealing with a difficult subject. She was late but their office actually called me and asked me to push the appointment back 30 minutes, which was cool. One of my other doctors, I have sat in his waiting room for 90 minutes because he's so backed up. In fact, I think every time I've seen him, at least recently, the wait has been an hour minimum. That's just not cool.

Anyway, back the the ET nurse appointment. My stoma has been shrinking, which is normal, but that means the bag openings were too big now. When that happens, the skin around the stoma gets raw and irritated because of the acids in your intestines. Now that I've seen the nurse though, she resized it for me and that won't happen again. She had told me to not change the bag (or "appliance" as they're called) before seeing her, so I hadn't changed it in 7 days which is at least 2 days too long. That contributed to the raw area. She gave me some powder to put on the raw area and that should heal up in a week or so. The best part though is that now that the stoma is shrinking down to its normal size (they are swollen after surgery and need a few weeks to shink down), she switched me from the generic large opening "cut to fit" appliances to a smaller opening "cut to fit" appliances that has a cupped area right around the stoma. Hard to explain without actually showing you, but the point here is that the new bag is MUCH more comfortable. With the old ones, I felt like I had a plate stuck to my stomach and it felt like it was buckling unless I sat up perfectly straight. These new ones don't feel like that at all. It feels more like a bandage on my stomach and when I'm sitting still the feeling almost goes away. Plus, the cupped area makes it possible to wear under jeans (I've been wearing sweats since the surgery). This is all hopefully temporary on me since they'll be reversing my ostomy in a month or so, but I was having a bit of a hard time learning to feel "normal" with the old appliance. I realize it hasn't even been a month yet, but still. If anything goes wrong, either now or in the future, I may be stuck with this thing, so my doctor wants me to take this time to learn to live with it. This new one definitely makes that much more possible.

In other news, I've been walking a lot lately. My doctor had said the 2 key areas after surgery were walking a lot and watching what I ate. The eating part is because it's not too difficult to get a blockage if I eat the wrong thing right now or eat too fast and don't chew tougher food adequately. The funny thing is I'm actually supposed to stay away from raw vegetables and things like potato skins and corn... things your body doesn't break down really well. The walking part though is really significant. So significant in fact that I wish I would have really pushed it earlier. When I was in the hospital, I was trying to walk a fair amount. Once I got home though, I settled into my recliner and just walked around the house when necessary. I had planned on walking outside and to the park nearby, but the weather just sucked, so I didn't. The pain was sticking with me... it wasn't really severe, but it hurt enough to take a vicodin. It was sort of a cross between feeling like my insides were sticking together and the wounds/scars were tightening up and contracting. A few days ago, I decided that if I was going to take a vicodin to make the pain go away, I was also going to walk and use the pain-free time to good use. So I started doing laps around my pool, just a nice casual pace walking the perimeter. The first day I did 20 laps and afterward... hey, the pain actually feels a bit less. The next day I was determined to continue walking, so I made some really rough calculations and figured that a half mile was probably about 33 laps. Easy enough, so I'm doing 33 laps 3 times a day and it's made a huge difference. I'm off the vicodin completely now and most of the time have no need of it whatsoever. Once in a while it aches a little or I feel a bit run down, but most of the time I'm definitely feeling better. I've decided to up the lap count each outing now because 33 isn't really a challenge. It's more of a time sink, so I don't know how high I'll go with it... I just want to push it up a ways gradually and give me some concrete numbers to shoot for.

Anyway, that's about all for now, I've been sitting here long enough. Oh, I do want to write up something about the second book I read, but I'll come back later and do that.

-jk

Is anybody reading this thing anymore? I mean other than family that knows what is going on anyway? I feel like I'm talking to a wall here, which isn't doing much for my motivation to keep blogging. Between that and the fact I am not comfortable sitting for extended periods of time, I just haven't been blogging much at all lately, so if you are reading these, let me know.

Anyway, things are progressing nicely, now. I've been spending a lot of time lounging around trying to heal, and I think I'm making good progress. The power outage sucked. Because of the storms, we lost power for 24 hours, had it turned back on for maybe 2 hours, and then off again for another 10 or so. Cold house, cold food... luckily we have a little wood stove and putting a Duraflame log in there was enough heat to heat up a kettle of water for things like tea and hot chocolate. We also discovered you can roast marshmellows over a candle.

Recovery-wise, I'm doing good. I found another staple in my stomach that we missed when taking them out in the hospital. I had my follow-up appointment with my doctor yesterday and he removed the final staple. The steri-strips are all gone too, so now it just looks like a healing up ax wound to my stomach. The incision starts a couple inches above my belly button and continues down, curves around my belly button, all the way down until about 4 inches below my belt line. He also gave me a couple pictures they took of my colon. I'm not exactly sure what a healthy colon looks like, but it's hard to escape the fact that after looking at mine, it's obvious mine was not healthy.

I was supposed to have an appointment or two with my ET nurse by now, but that hasn't happened.... which is somewhat discouraging. Granted the power outage put them behind schedule too, but all things considered, I think they definitely dropped the ball on this. I'm a new patient with a stoma and for 2 weeks now I've been just figuring it out on my own. I ran out of bags and had to get ahold of my doctor to get me a prescription for refills, which I then had to get filled... this is stuff I should have been talking to the ET nurse about. She was supposed to be showing me how to deal with this and making sure it was being taking care of correctly. With the holidays though, she was out of town and then losing power.... I sorta just fell through the cracks I guess. I've been at times feeling like depression was trying to grab hold of me too over this... just kind of a lot to deal with and having somebody that knew WTF was going on and how best to handle it would have been nice. I keep having to tell myself that this is only temporary... best case scenario is that right now it IS only temporary, but there is a definite possibility, even though a small one, that it will be permanent.

Anyway, the doctor said that it's probably another 6 weeks at the earliest that I'd be able to have the reversal, or reconnection, surgery. He also said that now we're on MY timeframe rather than the cancer's, so I could wait a year or more if I really wanted to. I told him that I'd probably want to do it sooner rather than later and he said that part of the reason to wait is because he wants me to have a good experience with the ostomy. He wants me to really understand it and learn how to cope with it effectively so that later on, if it becomes advisable to remove the j-pouch, I'll know all about living with the ostomy. He doesn't want me to fear the ostomy challenges and end up suffering longer with a failing j-pouch just because I'm afraid of the ostomy. If I learn to live with it effectively now, then later on I'll always be able to make an informed decision as to how I want to proceed, whether with the j-pouch or reverting back to the ostomy. I certainly can't fault his logic, and am determined to really try and do my best to learn what I need to learn. I will say though that right now, the ostomy is a bit of a challenge, and I don't even leave the house hardly at all. It's hard for me to really accept living with this permanently without getting somewhat depressed, even though I've heard from a lot of people how once you become comfortable with it, it gets a lot easier. Meetin with the ET nurse probably would have progressed me further along down that road, so I just need to take it one day at a time and give it a chance.

So that's pretty much it for now. I'll try to write more often. If you want to see a couple pics of my colon, let me know. If you have a weak stomach, I wouldn't really suggest it. It's not REALLY gross in my opinion, but you can definitely see the disease. If you had any doubts about whether or not I REALLY had ulcerative coliitis and cancer, this will convince you completely.

-jk