I had meant to post another couple entries here about how things have been going, but I've been fairly busy and things have been going pretty smooth so it just kept slipping my mind. Nights are still a challenge and that's making me tired during the day, but otherwise can't really complain. I'm still restricting my diet quite a bit in an effort to minimize the turbulence, but hopefully that will become less of an issue very soon.

In fact, things have come along so far that I decided it was time to get back to work, so yesterday was my first day back. I didn't feel like I had missed much until I got back there yesterday and it all started sinking in. There is so much stuff I need to get up to speed on now... I definitely feel out of the loop.

Anyway, that's pretty much it for now. I'm off to work.

-jk

Well I'm back on my feet again, but I've had a rough couple of days. I won't go into all the details because you probably don't really want all the details. If you really want them, leave me a comment and I'm more than willing to share, I'm just figuring the people reading this are more interested in generalities than specifics. Let's just say I had a complication come up that required me to see my doctor earlier than my scheduled appointment, and then he had one of his assistants drive me to the hospital right away for a pleasant little procedure requiring anesthesia.

What's funny is that my doctor said in the 25 years he's been doing this, this is the first time he's seen this particular problem come up. Luckily he was able to identify the problem quickly and fix it easy enough because what I was thinking the problem might be wasn't good at all. What I did right on my end was that as soon as I started thinking there might be something more serious going on, I quit eating until I got word from him, and then he had me only take clear liquids until I saw him. This I'm sure made diagnosis of the problem much easier.

So anyway, repairs have been made and I'm back headed in the right direction. I'm on a restricted diet for a while now though which kinda sucks. I'm on clear(ish) liquids and meat only, until Sunday. Weird huh? So I can have 7-Up and steak. Chicken, fish, eggs are ok too, along with liquids that don't have much residue and are not too dark. Absolutely no fruits or vegetables or breads. This is going to be a rough diet. I had turkey for dinner but without anything with it, it just doesn't fill me up for long, so I'm starving again.

Oh, and I'm not supposed to do any major walking for a couple days either, to give things a chance to heal up. This problem wasn't related to my excessive walking in any way though, just a precaution now.

-jk

So I've been home from the second surgery now for a week, and things are progressing. The first few days were really rough, but things are starting to ease up now. Everybody said it would be easier, but I almost prefer the pain from the first surgery to the symptoms I have now. Pain is easier, you take a pain pill and find something to occupy your mind. I don't have anywhere near as much pain now, but I've been in and out of the bathroom so much it's not funny. Still, I will say that it is definitely getting better. Things are slowing down and getting much easier to deal with. My trips to the bathroom have been getting less frequent and the changes I've made in my diet are helping to reduce the inflamation as well. All in all, I'm definitely headed in the right direction.

I have been getting a pain in my stomach though that I'm not sure what to make of. It feels like things are just pulling on something tender, like the stitches on the inside are irritated and just pulling in an uncomfortable way. It doesn't hurt all the time, but I notice it more when I've been up for a while walking, unfortunately. Also, the wound where the doctor did the reconnection still has the steri-strips, and the left side of that wound is still completely numb and swollen. It's only been a week so I'm not too worried yet, but I would have thought it would have made more progress by now. It's not red or looking infected in any way, and the tugging pain completely goes away when I'm sitting down, so I don't think it's too serious. I have a doctor's appoint toward the end of this next week, so unless it suddenly gets worse, I'll at least see what the doctor thinks is going on then.

I'm still walking, but I've started to slow down because the weather is not as nice. In the week I've been out, I've walked 16 miles worth of laps around my pool. Added to the 11+ miles I did while I was in the hospital and that 27 miles in less than 2 weeks. Not bad for an invalid.

Also, I posted a couple of long blogs under the label "semi-related medical" which are regarding other medical things I've gone through that in some way ties into this whole UC thing. The one about my hands I had posted elsewhere but I figured I might as well post it here so it's all in one place since it could be a potential contributing cause.

-jk

I got home from the hospital yesterday, and the surgery went great. He didn't need to open me up through the large cut. He just went in through the hole where the stoma was, reattached everything and then closed that hole. After surgery there was much less pain than last time, although there was still a surprising amount, at least in part because they put me on morphine again which just doesn't work worth a damn for me. After I got them to cancel the morphine and put me on the pain medicine pump with Dilaudid where I can hit a button to control how much pain medicine I'm getting, I started feeling much better.

The next couple days were all about waiting for my intestines to wake up and start moving again. That got a little painful because gas starts to build up and parts of the intestines wake up before others resulting in you feeling like there's a lot going on in there, but nothing is really happening. I did a lot of walking to help speed this process which worked great.

Once everything was awake, I started eating, first liquid only diet, and then quickly moving on to soft foods. Now it's all about trying to figure out how my body wants to process foods and convincing it to do it in such a way that works well for me. My doctor described it as being like a baby learning to walk... things have been rearranged and I need to relearn how eating will affect me and what I need to do to get it to cooperate. My j-pouch only holds about 75 cc's of waste and over the next couple months, it'll supposedly stretch to hold 750 cc's of waste, so working through that process along with learning what and when to eat is the goal of the next couple months. Whereas after the last surgery the recovery was more about physical healing, this recovery is more about adapting and learning the new rules.

As I have said before, healing like this is really helped by walking, so in the hospital I did enough walking for a handful of patients. My surgery was over by 6:00pm and around midnight I was having the nurse walk 3 laps around the floor... a lap is a bit over 300 feet. That was Tuesday night. Saturday mid day I came home so I didn't get any walking in. The 3 days in between though, Wednesday, Thursday, and Friday, I walked a bit over 11.5 miles worth of laps... in a hospital gown dragging an IV pole no less. Many nurses and hospital workers, and even other patients, commented on my walking. When asked what I could do to help things progress faster, doctors and nurses alike said "You're doing all the right things... keep up the walking and it'll happen soon enough."

I even met a really pretty nurse while I was in there that I got along with so well I asked her out despite the fact I was a patient in the hospital and FAR from looking my best. I've met a lot of pretty nurses in hospitals before and my brain was always on top of things enough to know that while you're in there you look like shit and feel like shit and the last thing you should be doing is trying to attract a love interest. She was so cool though that I decided that if I didn't say anything, I'd likely never see her again, so it was worth risking the fact that I was far from looking my best. Turns out she's married. Doh! Swing and a miss! Oh well, at least it's good to know that when I realize the effort is worth it, I'll step up to the plate and make an effort and I won't chicken out. Still, a happy ending would have been cool about now wouldn't it?

Anyway, things haven't all been smooth sailing. I won't go into details, but damn I've been in the bathroom a lot. Trying to figure out what your insides are doing and how to get them to work on your schedule is not an easy task.

-jk

In case I forgot to mention it, which I think I did, my TakeDown surgery is today. Actually I need to be at the hospital in about 90 minutes. I haven't eaten anything since Sunday dinnertime, nothing but clear liquids from then until 8:00AM this morning, and nothing at all, not even water after 8:00AM. Damn I'm hungry... and thirsty. A little over 3 hours until surgery.

So with any luck, the surgery will be short and completely successful. Not sure how long it'll take, it depends on whether there are any adhesions they need to remove and whether he needs to open me up through my big scar or whether he can do it all through the stoma hole.

Time in the hospital will vary depending on all those things, but I know he has me down for up to 5 days... hopefully it'll be less. Then it's home to recover for 4 - 8 weeks while my body learns how to cope with the substitute colon.

Anyway, just wanted to post a quick message for anybody following this. I'll be back in about a week. Wish me luck.

-jk

Have you ever had one of those days where you had sort of an epiphany and very shortly thereafter you had an epiphany in the opposite direction? This morning was just such a morning. Follow along...

Let me back up a few days first though. I had my "pouchoscopy" and "pouch-o-gram" tests last Friday in preparation for my TakeDown surgery. I haven't officially heard the results, but it sounds like everything was right in line and it's looking like I'll be having the TakeDown surgery either next week or more likely the week after that. One of the nurses though pointed out something I've been hearing a lot lately. He said "You sure have been through a lot for someone so young." Now, I'm not exactly young, and I know there have been many people, kids included, that have been through much more in much less time. Still, I sure feel like it sometimes.

Anyway, I had my appointment with the Oncologist this morning. My surgeon said he didn't think I'd need chemotherapy but wanted me to meet with an oncologist just to make sure. While sitting in the waiting room light bulb one came on. "I seriously need to find myself a good Pediatrician. I'm tired of being the youngest one in the waiting rooms for all these doctor's appointments. Tired of waiting in waiting rooms where the most prominent magazine is 'Senior Living'."

Talking to the nurse that took my vitals, she commented on how my chart was very different from most other patients. My blood pressure is perfect (100/64 today) and the page that lists my currently prescribed medications is blank.

When the doctor came in, he started the conversation with something like "You should send your doctors something really nice for Christmas because they seriously saved your life." He said things are great, I have no cancer and no need for chemotherapy. He went on to explain the stages of colon cancer and where I was in the progression of things. The tumor was about 4 cm, which was bigger than I thought it was, but luckily had not progressed deeper than the innermost layer. He said my surgeon took biopsies from something like 24 lymph nodes right around the cancer and another 26 or so lymph nodes in other locations and ALL came back cancer free. He said that had this been a year or two later, we'd be having a very different discussion. He also said that based on the size it had probably only been there for a year or two. Considering I've had UC for about 20 years and this was all found after my first colonoscopy, to quote my Oncologist "you dodged a bullet with this one!" He ended my discussion by telling the nurse to get me out of there and make room for some sick people.

It was about this time that light bulb one popped and went out and light bulb two came on. "Would you rather be the oldest one in the waiting room? Or would you rather be the healthiest one in the waiting room?" Yeah, I'll take the healthiest any day of the week.

The irony to me in writing this blog is that yesterday I was pissed off because without so much as a warning, they canceled my medical disability because my claim had expired and I was supposed to be back at work. Never mind that the length of time was a very vague estimate and that in all likelihood I'd need more time, they just cut you off and you get to try get things rolling again while you're trying to rest and recover. So now I'm short of money and hoping there won't be any problems with my doctor putting in an extension. There "shouldn't be" any problems, let's hope there aren't. Anyway, I was pissed off because of that and was going to get on here and blog up a storm and I decided I just didn't have the energy to and I hoped the negativity would pass. It'll take a few days for the money situation to work itself out, but regardless, today was a MUCH better day.

-jk

It's been a good week since my last post, and things are moving along, even if a bit slowly. I haven't been walking as much, but I went on a 5 mile bike ride today and have been doing some pull-ups as well. I'm still feeling good and ready to get on with the next surgery. But before that, a side note about some pain.

Last weekend I was going to get in my car to go visit a friend and my stomach area started hurting. It was right on the scar maybe an inch below my belt line, it just started getting tender. Didn't hurt if I sat up straight and didn't poke at it, so I went about my business. The next day it was more tender, and if I stood up straight, there was a bit of a bump forming on the scar. It wasn't red or anything, and I wasn't having a fever so I was pretty sure it wasn't an infection. Actually my thought was that maybe it was a small abcess forming in the scar tissue or something. Wasn't bad enough yet to seek medical help, but definitely worth keeping an eye on.

The following day I had an appointment with my ET nurse, and my sore spot was already feeling a lot better. I had the nurse take a look and she advised me to have my surgeon examine it when I saw him on Thursday, but she said it could be one of the internal stitches had dissolved enough to come loose and the rest was just in a spot dissolving and being an irritant. She said they are supposed to dissolve in 6 - 8 weeks, and this was at the 6.5 week mark, so seemed like a high probability. Anyway, the soreness got better every day until by the time I saw my surgeon it was feeling fine.

Speaking of seeing my surgeon, that was the appointment I had been waiting for. I've been anxious to schedule my next surgery where they'll reconnect my intestines and I can start using my j-pouch. That surgery is referred to as the Take Down surgery by the way. So I've been anxious to get that phase underway. Well, the first thing my doc need to do is "dilate my butt"... there is just nothing fun about that. Ouch! So this will be way too much information for some of you, but the reason for doing this is that because of the surgery and lack of use of the rectum, your rectum will shrink to the point that not much will fit through the opening. They need to basically stretch it out and break up the scar tissue and let the muscles contract to keep the opening closed. Yeah, Ouch! It's a short term pain, and definitely not as bad as the deep down internal pains that come with the drains they put in you after having some major surgeries.

So after that bit of fun, we talked about scheduling my next surgery. I need to have my "pouch scoped" first to make sure it's all looking good, and then I need to have a leak test done to make sure it healed up without any leaks. At first they said they probably couldn't even do those tests until March because of scheduling issues, but they had a cancellation and will be able to do it this next Friday. That's good news. If that goes well, I think I'll be able to have my Take Down surgery within a couple weeks.

The Take Down surgery will hopefully be better... it's supposed to be. I've been told I'll be in the hospital for 4-5 days if everything goes ok and then I'll need at least 2 weeks to recover, depending on how fast I heal and all that. The doc said he would try to go in through the stoma hole to reattach everything if he can, otherwise he'll have to open up my earlier incision again and the recovery can take longer in that case. Anytime you're cutting through the abdominal wall, recovery takes some time.

Other than that, not much new. On Friday I swung by my work to say hi to everybody. Actually I was going to participate in an interview we had scheduled but our candidate took another offer. So I hung out for a couple hours and participated in a quick meeting instead. It was cool seeing everybody again and letting them know how I'm doing. It'll be good to get back to work.

-jk

Toward the beginning of 2006, my UC was doing pretty good behaving itself, but I'd occasionally have a little bit of pain in my side like things weren't digesting fast enough. Normally that feeling would last a couple hours and go away, but in February one day it came on and just wouldn't quit. I tried laying on my side and my stomach and twisting this way and that in an effort to get whatever was making my side ache to move along and it just wouldn't comply, so at 9:00 pm I ended up going to the emergency room. At 12:00 midnight I got tired of sitting in the emergency room waiting (I wasn't terminal so wasn't high on the priority list), so I left and decided to return in the morning when less people were falling apart. I guess people would rather sleep in then go to the emergency room.

So, 6:00am and the pain is still there, so off to the emergency room I go. I still sat in the waiting room for an hour, but they were finally able to see me. After a bunch of tests, it turned out my gall bladder was having issues. Rather than being about 2 inches across, mine was 5 inches, and the determination was made that it needed to come out. They thought it could have been caused by an infection but they weren't sure. I guess normally high fat diets are more likely to cause gall bladder problems but I had been on a low fat diet for years because of my UC. If anything, my gall bladder should have been coasting for years.

The next day they did a procedure which I can't remember what it was called. Basically they put me under a sedative which they called a "conscious sedative" which would keep me away but where I wouldn't remember a thing the following day. Very weird, and totally true. Once under the sedative, they passed a probe down my throat all the way through me to the point where they could use tiny forceps on the probe end to remove a couple gall stones in my bile ducts. They wanted to do this before the gall bladder surgery to make sure they were taken care of.

The following day they did the gall bladder surgery laproscopically and everything went fine. They said that it's such a common surgery and it has been performed so many times that the chances of something going wrong are really small. In my case, it came off without a hitch.

Recovery from the surgery was easy at first, but my UC ended up causing some complications. First off I was on Vicodin which really sent my UC into a major tail spin. Everything we tried to get it under control just seemed to make it worse. Finally my doctor suggested we try Purinethol which from what I understand is a drug they initially gave to Leukemia patients but found out works pretty well with IBD sufferers too. He said "There's a really small chance it can cause pancreatitis but out of all my patients, I only have one lady that that has been a problem." So thinking I was on the road to feeling better, I started taking that evil medicine.

I took Purinethol for 3 weeks I think... it's all a pretty big blur now. I remember having pretty bad stomach aches for probably 80% of the time, day or night, whether I ate or not. I'd get hunger pains so fast and so bad that I once got in the shower not hungry at all and within 5 minutes I almost got out of the shower to go eat. Worst though was that even though I was eating 3 meals a day, I got down to 139 pounds, and I'm 6'1 or so. The doctor said I was probably developing pancreatitis, so I did what I had done the previous 17 years for my UC. I stopped taking all medications and went back to managing it myself through diet. Within a couple weeks I was putting on weight again and able to return to work

So wrap your brain around this one. During that time when I was really feeling the worst was when I had my first colonoscopy scheduled and had to cancel it because I just didn't feel good enough. It wasn't until just over a year later that I had to see that same doctor for the liver weirdness when he insisted on doing the colonoscopy that found the cancer. Had they done the first colonoscopy and not found the cancer, I can almost guarantee you that I would not have had this second colonoscopy and I likely wouldn't have had one at all until it was too late for them to catch it in time.

As far as I know, we don't know the real cause (or causes) of ulcerative colitis, but from what I understand there are some things that we think might play a part. I've been asked a number of times if I was on any high doses of antibiotics before getting ulcerative colitis and as it turns out, I was in a car accident a couple years earlier and ended up in the hospital for a while. Normally I would think that that is too much time to be considered as playing a factor but I'll never forget what the doctor that diagnosed me said. He said that there was significant scarring in my colon, consistent with what you'd see if I had actually had UC for a few years, not just the few months I was exhibiting symptoms.

Anyway, below is the long story of the car accident I was in prior to my diagnosis.

When I was a senior in highschool, I was in a car accident that was one of the defining moments in my life and it changed the direction I was headed. As close as we can figure, this is how it happened. There may be some small inaccuracies, so I'll correct them as I get feedback.

Who, What, Where
Well it wasn't really a car accident. I was in the back of a lifted Toyota 4x4 with my then-girlfriend, Renee. My older brother was driving, it was his truck, and my younger brother was a passenger in the cab. We were in the mountains camping and had gone in to town (leaving my friend behind at camp) to get something to eat or something like that.

On our way back to the camp area, we took a turn a little too fast and hit some gravel on the side of the road and started to lose control. Over-correcting or the end of the gravel caused the back end to whip around and the truck flipped over, first onto its left side, then onto the roof and hood. Renee, was on the outside or uphill edge of the flip and sort of got catapulted out. The short story about her was that she got a broken wrist and some nasty scrapes and bruises, but was otherwise no worse for wear, physically.

My older brother driving had the window next to him shatter and a lot of that glass ended up in his arm. Otherwise he too wasn't much worse off, other than maybe too much guilt over being the driver. As a side note there, I totally don't blame him one bit. Shit happens and you deal with it and move on. It was absolutely unintentional and so I don't point fingers in the slightest. I never even saw this as so much of a bad thing or something I complained about or anything. It was more of an interesting experience that I just happened to be going through.

My younger brother? Unharmed. He bounced around the inside of the cab because he didn't have a seatbelt on and walked away without a scratch. (Don't take that as a sign that you shouldn't wear your seatbelt. You still should!) He got more than his fair share of stress though, not even old enough to drive and seeing his family pretty badly injured and the trama I'm about to describe.

Ouch!!!
I on the other hand had a different experience. I instinctively grabbed on to the rollbar, right hand on the side bar and left hand overhead near the KC light. As the truck flipped onto that side, my right hand got crushed between the bar and the road. The truck continued to roll onto the roof and rollbar, crushing my other hand as well. Had that KC light not been there, I believe my left hand would have been sheared off completely. Luckily, the light got sheared off and the metal bracket that held that light was strong enough to keep some of the pressure off my hand. The truck skidded for a couple feet on the rollbar and then tilted forward onto the roof of the cab and the hood and skidded the rest of the way like that.

The brain is an amazing thing. I was conscious through the whole thing, but I don't remember any of it. I actually only remember bits and pieces of the morning before the accident, don't remember the day before at all, and don't remember anything until days after I was in the second hospital. But I'm getting ahead of myself.

Skip This Section If You Can't Handle Gross Stuff.
So there we all are, lying all over the road. The reason we were up in the mountains camping was because we had dirtbikes and were up there tearing up the trails. We didn't have much in the way of protective gear like chest protectors, but I did have a helmet and these red-leather gloves. You can possibly see where this is going, and this is your last chance to skip ahead if you have a weak stomach.

So there I am, just had both hands crushed and I'm lying in the road. My brother is trying to help as best he can. At some point I say to my brother "take my hands off" He goes "what?" I then say "Take My Gloves Off!". My hands were so covered in blood that I believed I had those gloves on again. He says "you don't have any gloves on!" and so I start grabbing at my wrists and trying to slide these imaginary gloves off. My brother told me later that he could see the bones in my hand (metacarpal of my index finger mainly) when I would try to slide those gloves off. There was one area that was missing a lot of flesh and the white bone was right there.

Anyway, a lady driving by stopped and ran over to help. She had some towels in her trunk and she and my brother wrapped my hands in the towels and were able to keep me from doing any more damage.

They're Coming To Take Me Away
An ambulance came and took us to an emergency room or trauma unit someplace in town where they began cleaning things up. At one point they contact my mom and tell her what has happened and she can hear me in the background yelling and causing a ruckus. She asked to speak with me and the emergency room people said no because they described me as being combative. So my mom hung up and immediately called back and said "no I want you to put him on the phone!" Luckily they did. When they put me on the phone my mom said "Jim, I need you to calm down. They're trying to help you." I responded with "okay" and that was it, I immediately calmed down. If that's not a sign of having respect for your mother, I don't know what is.

I have no idea how long I was there because that was still during the time that my brain has blocked from my memory. At some point, hours or days I don't know, I was transferred to a hospital in a different city, and a few days after that is when my memory starts working again.

The Hospital
So there I am in the new hospital. My hands are so swollen that when I rest them palms down on the table, my fingertips don't touch the table surface. They are the size of cantelopes. The amazing thing is that I actually have fingers. Damage that's been done.... my right hand got the worst of it bone-wise. The bones in the back of my hand they find in 6 pieces. My thumb was jammed straight back into the joint which exploded and they find that too in 6 pieces. My left hand only had a couple fractures, but it got the worst of the tissue damage. You have two tendons to your index finger and I lost one. You know that meaty section you have between your index finger and thumb? I don't have that anymore.

Now, luckily for me I had a pretty young female doctor. She didn't know what to do about me, but when she was told "you're gonna have to cut both of those hands off", she said "He's 16, I'm not gonna cut his hands off. There must be something we can do." (I'm summarizing there since I wasn't actually involved in the conversation... and I still have no memory at that point anyway) She ended up taking pictures and x-rays to Stanford Hospital and asking for guidance, and ends up getting in touch with a well-known doctor in reconstructive surgery who becomes the overseeing-surgeon on my case.

Anyway, long story short there, they perform skin-grafts and put pins in my hands and piece the bones back together. The first skin graft, they took what they called a split-thinkness skin graft off of my left hip. They basically slice a layer of skin in half, right through all the nerves. You can imagine using a cheese slicer to remove a thin layer of skin Then they somehow checker it so that it has holes in it so that the tissue underneath will breath and they cover the wound with it. It attaches itself to the wound and grows back. Trippy, but the place they took the skin from? Yeah, that kinda sucked. Almost like an intentional roadrash, but it heals real quick with a large but faint scar. That skin, they ended up using in 4 different places, two on each hand. The second skin graft they performed was a full thickness graft. As I understand it, instead of taking a patch of skin from the surface, they take a layer going from the surface inward? Hard to explain, but it leaves a more significant scar with a lot less pain. Anyway, I'm not sure on the details on all of that... I was pretty out of it at the time, but that's how I believe it worked. So that skin graft they did because one of the earlier skin grafts was done in the webbing between my index finger and thumb on my right hand, and it had scarred up so that the webbing went all the way to the last joint on my thumb... almost like AquaMan. So, they cut out that and rearranged things a little and used the new skin to fix it up. They also used 3 pins and a wire to hold the bones in the back of my hand in place, 3 more pins to re-assemble the thumb joint, and 2 pins to stabilize the thumb (I think)... all in my right hand.

How good of a job did they do putting my hands back together? You'll have to read all the way to the end. The only remaining hardware though is a small wire. They took out all of the pins except one, and that one came out by itself one day when I was off at college. I'll explain how the hell that happened later if anybody really wants to know.

Back To School
I ended up missing quite a bit of my senior year of highschool. Even when I went back, I had both hands bandaged up to my elbows and they had to be kept above my heart, so I listened and took oral tests and missed a lot of class because of physical therapy. You don't realize how much you need your hands until you don't have them anymore, and there's nothing quite so humbling as having other people wipe your ass. Luckily for me, my Renee basically moved in with me and took care of me and did all those things that I needed done. I also suddenly became more widely known at school. I was more of a nobody at school before that, and afterwards, all sorts of people were saying hi and talking to me. The teacher of my religion class told me that she used my experience while I was out to start the class talking about near death experiences.

A Life Changed
The funny thing is that when I was in the accident, I was also taking a class in automechanics and was kind of planning on being a mechanic. I had to drop out of that class because I was in the hospital and I ended up auditing a programming class. I had taken another programming class previously and enjoyed it but just never thought much about taking another one. I was good at it and one thing led to another and here I am a software engineer instead of a mechanic. I still do work on cars from time to time, but anybody that knows me knows I'm much better suited to a thinking job like working with computers than wrenching on cars.

It wasn't until much later that I found out that the original prognosis was to amputate both hands. They were quite a mess. Even after the first skin grafts, when they unbandaged them, Renee had to leave the room because she almost passed out. She just expected them to look a lot better after the surgery. These days, I have almost full function (95). It is truly amazing how well my hands work considering what they have been through. I can type 60 words per minute, play the guitar, and flip people off... not all at the same time though. I can do all the things you need really fine motor control to do, like fasten a necklace clasp or thread a needle or dial a cell phone with one hand. I bet most of the people I interact with on a daily basis don't even notice or suspect what has transpired, and more than one ex-girlfriend has said they love holding my hands and think the scars are cool.

Here's something I've always thought about though. Would I heal as well if the accident happened today? No, because I'm older, but I'm talking beside that fact. The reason I ask is this. When the accident happened, I don't think it ever entered my mind that I would not be whole again. It just never occurred to me. Well, just prior to my memory kicking in again, I guess right after I was moved to the new hospital, my family was all gathered around and I evidently looked up at them and said "am I going to die?" They all laughed and said "no, you're not that bad off." Like I said, I don't remember that, and other than that one incident, I don't think it ever even occurred to me that I wouldn't have my hands. So, with all the experience I've had now, I don't have that same naivete. Does being completely clueless as to how bad things CAN get actually help you heal?

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