...to be healthy

2008-04-18T08:08:00.001-07:00

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

2008-03-19T21:54:00.000-07:00

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

2008-03-15T17:02:00.000-07:00

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

2008-03-09T23:37:00.000-07:00

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

2008-03-04T10:33:00.000-08:00

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

2008-02-20T12:10:00.000-08:00

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

2008-02-10T17:38:00.000-08:00

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

2008-02-06T16:47:00.000-08:00

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.

2008-02-05T16:43:00.000-08:00

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?

2008-01-30T10:56:00.001-08:00

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

2008-01-29T16:55:00.001-08:00

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

2008-01-27T14:52:00.001-08:00

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

2008-01-16T10:26:00.000-08:00

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

2008-01-10T10:47:00.001-08:00

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

Home from the hospital

2007-12-28T17:54:00.000-08:00

Just a quick status blog.... I'm home from the hospital, got home Thursday afternoon. The surgery went really well, everything accomplished as we had hoped. And more good news, they have found no signs of cancer in my lymph nodes, so at this point it looks like I'm not going to need chemotherapy. You have no idea how good that was to hear. The stay in the hospital was without surprises, which is what you want in a hospital stay. Lots of pain, lots of pain medicine, lots of time to sleep but not much comfort to do so.... a few cute nurses seeing me at my best, etc.

There's a big difference in the quality of care you receive in the Trauma ICU and in the normal in-patient stay area. In Trauma ICU, few patients and more nurses, so the nurses have time to actually talk to you to find out how to make you feel better. When they say "you can have another pain shot in 1 hour", they'll be back in an hour to give you that shot. In the other area, lots of patients and too few nurses. While they were all nice, it's obvious there aren't enough of them to go around. When that hour is up and you're looking for your next pain med shot, it's sometimes an hour or 2 more before you get it unless you're ringing that bell to keep them on their toes. That sucks. Still, all things considered, the hospital stay was ok, and the nurses did a good job of taking care of me.

Now that I'm home, it's all about the healing. Vicodin is my friend....everything just hurts. Slow movements and no heavy lifting. Played the Wii today which was pretty effective in getting my mind off the pain, so I anticipate that happening more in the days ahead.

The other big adjustment right now is learning to live with my ostomy. If everything goes as it should, I'll be back in the hospital in 6 weeks to have it undone, but for now, that's something new to learn how to deal with. So far it hasn't been too bad, although I also haven't had to deal with it anywhere other than the hospital and my home. I've had to replace the bag a couple times because of leakage problems, so rather than the bags lasting about 5 days each, they're lasting me about 2. I'm sure that'll straighten up as I meet with my ET nurse to work out the kinks in the weeks to come.

Oh, another oddity.... right after surgery, the thumb, index, and middle finger on each hand were tingly and numb like they had fallen asleep. I woke up from surgery like that. Some of the nurses thought it might be from the epidural, but the doctor said no. The anesthesiologist said it was likely the length of time I was laying on my back with my arms outstretched kinda stretched out the nerves going to those fingers. I have noticed before that if I lay flat on my back, sometimes my hands start to fall asleep, so this seemed like a likely cause. In the hospital, we tried using pillows to redistribute the pressure on my back and that made the numbness gradually decrease. As of right now, there still is a little bit of a tingly sensation in my thumbs on both hands, and sometimes when I stretch my arms the tingling sensation increases a little, but hopefully that'll go away soon. It's not painful or anything, just a little annoying.

I guess I'm now officially part of that ever growing group of people... cancer survivor.

Anyway, I've been sitting long enough. Time to find my friend Vicodin and go lay down.
-jk

2007-12-19T10:14:00.000-08:00

I want to come back and fill in more of the details about my hospital stay. I had planned on doing it earlier but keep putting it off. So here's a quick entry to remind me to come back and fill it in... slacker!

UPDATES and STATUS

2007-12-18T20:09:00.000-08:00

OK, this is my last blog entry for a while. I'm heading to the hospital in 4 hours, and 7:30 tomorrow morning is the surgery. I found out the surgery is not as long as I originally thought... only 4-6 hours. Then it's a couple days basking in the sun on a little island called "Surgical Intensive Care" and soon I'll be able to eat again... so hungry.

So, if you're looking for updates, read the comments to this blog posting. People will comment here as to how the surgery went and how recovery is progressing until I can post myself. If things don't go well and I owe you money.... you should have collected sooner. ;)

-jk

2007-12-15T09:47:00.001-08:00

Where does the time go? Wednesday is sure fast approaching, and I have a lot of stuff to get done beforehand. I had an appointment with my ET nurse (and another nurse in training) on Wednesday and that went really well. Everything I had read said that nurses that specialize in this field of care are always really nice and helpful. She lived up to that expectation. While I was in the room waiting for her, I noticed a newspaper clipping on the wall about her that said she won a national award in nursing, so that helped to put my mind at ease a little. She explained the procedure from beginning to end and answered any questions I had. She also marked my stomach for where the stoma is going to be located for the next 6 weeks. Anyway, she's really nice and very helpful and I think she is going to make the next 8 weeks a bit more bearable.

She also told me that my doctor is excellent. She told me that he has been doing this a long time and he even lectures across the country in this field. She also said that nurses can't really tell you if they think a doctor is bad, so they'll always at least say "he's good", but the real way to tell is if they say "I'd let him operate on me"....and she said "If I was having this surgery, he is the one I would have perform it". That was really good to hear, after my last post about wondering about going to Ohio or someplace else. So if I'm going to do this, it seems like I'm in the right place and with the right people working on it.

Anyway, if I haven't said it already, here's the plan. Tuesday I'll be working from home as I start the "prep" to get my system ready. Anybody that has had a colonoscopy knows what I'm talking about, but I also have a couple more steps (and more pills) to the prep to make sure everything is clean and ready to go. Tuesday at midnight I go in to the hospital and they start hooking me up to everything, giving me IV's and whatever to make sure I'm well hydrated. Wednesday morning at 7:30 they take me in to surgery. From what I understand, it's about a 10 hour surgery. Afterward, I'll be in Surgical Intensive Care for a couple days while they make sure things get back on track, make sure what's left of my intestines starts functioning again, and the nurse said I won't remember much during this time. The nurse said during surgery they'll put an epidural in if I want to help with pain management. After a couple days, they'll move me to less isolated areas and there's a small possibility I'll be home by Xmas. Actually, it's during my time in surgical intensive care that I'll finally find out what they did. Has it spread beyond my colon? Could they do the j-pouch? Will I need chemotherapy? All questions I'd like answers to.

In other news, today some friends from work are throwing what is now being called Jimdependence Day. It was originally going to be called "Down With The Sickness" (after the song by Disturbed), but got renamed to Jimdependence Day somewhere along the line. It's just a little sort of "get well soon" party for me. Anybody that knows me knows I don't like it when people make a fuss over me and I definitely don't want some sort of pity-party. This is a really fun bunch of people though, so there's no chance of this turning depressing. Somebody is bringing Rock Band and I'm sure there'll be other games as well. We were originally talking about going go-kart racing too, but I'm guessing that got forgotten as the party got more involved. Anyway, should be a lot of fun.

-jk

2007-12-10T22:40:00.001-08:00

No, I haven't forgotten about the blog and I haven't died yet. I just haven't had much to blog about lately, so things have been quiet. For the most part, I'm still feeling good, as far as the disease goes, not much to report. I did however miss working out on both Thursday and Saturday, which sucks. Thursday I was really tired, and with working a few extra hours, I just didn't have it in me. Friday morning I had a sore throat which was the start of being sick all damn weekend. A co-worker came to work like Wednesday I think coughing and sneezing up a storm. He said he felt fine, but if you're coughing and sneezing like crazy, doesn't that tell you something? It's not just about how you feel, it's about other symptoms as well. The fact that you're coughing and sneezing means you're not "fine". Anyway, is it a coincidence that 2 days after he came to work, I'm sick? So that was my weekend. I pounded the "Airborne", Vitamin C, and Nyquil and by this morning felt good enough to go to work, which is amazing.

I read someplace many years ago that people with UC on average get sick three times as much as normal. Our immune system is just so hammered that we tend to get sick really easy. I'm not sure three times is really accurate in my case, but I used to get sick a lot easier before I started really taking high doses of Vitamin C year round. Maybe a coincidence, but it seemed to help me some. Now I don't get sick as easily, but when I spend a decent amount of time near someone that is sick, it's a good chance I'll be sick soon after.

I hate being sick.

Anyway, the 19th is fast approaching.. too fast if you ask me. I'm reading the 2nd book still, and I still highly recommend it for anyone wanting to understand more about what UC is like. If you have family suffering with it, pick up a copy. It'll open your eyes I bet. In the book though, he was recommended by his doctor to go have his surgery in Ohio, because they have a really good facility there. It got me thinking.... I shouldn't be worrying about work and crap like that. I should be considering where I'm going to get the best medical care I can get. Could I go to Ohio for my surgery? Or there's a great facility in Texas, maybe I could go there? Stanford? What's worse is I've heard some horror stories about Enloe. Hmmm, doesn't seem fair that after being given a diagnosis like this, I don't have the luxury of searching out the best medical care I can find.

-jk

2007-12-03T20:53:00.000-08:00

I finished the first book, "I'd like to buy a bowel please" and it was a pretty good book. I definitely recommend it for anybody that finds themselves in the position of having their intestines removed.

The next book on my list is "It Takes More Than Guts" by Phillip Van Hooser. It's the personal story of Phil's battle with ulcerative colitis. I'm just beginning it, but so far I'd highly recommend it for anybody that has a loved one that is dealing with IBD (Irritable Bowel Disease). He talks very frankly about what he was going through and how he felt throughout his ordeal. I can certainly relate.

I'm finding the whole thing right now a little odd. I feel pretty good for the most part, although I am quite a bit more tired than usual. I'm sure the tiredness is from the extra stress and the feeling that things are a bit out of my control right now. Other than that though, I'm not feeling too bad. I had a good workout over the weekend and hope to get to the gym tomorrow morning for another workout as well.

So here's what I find odd. Throughout the day, I bump into people I know and they always ask "hey Jim, how's it going?" Most of these people don't know my current situation, and saying "I have cancer" seems like the wrong way to answer that, so I usually say "things are going good". I mean really, I feel pretty good other this cloud of doom sort of feeling over my head, but that's what I find odd. I have cancer and I'm telling people things are good. I'm feeling good and people know I'm healthy enough to workout and sooner or later they might find out I have, or with any luck HAD, cancer. I almost hear people saying "You worked out today? Don't you have cancer? Shouldn't you be in the hospital?" "Uh, no, I'm going to exercise and then I need to hurry up and get to work." That just gets me thinking, how many other people walking around me know THEY have cancer and are telling me they are fine? Probably, hopefully, none of them, but maybe there are people I know that I don't normally talk to that are in the same position as me.

Anyway, I just thought that was odd. It's strange to think that as good as I feel right now, I might be dead in 2 years if I do nothing. Two years ago I felt fine and was about 2 months from suddenly needing to have my gall bladder removed. But let's say that never happened. If I had cancer back then and the gall bladder thing didn't come up, I'd be dead about now... or at least so far along that traditional medicine would have been pretty much useless. It's somewhat unnerving to think you can feel so good and have things really going wrong. I guess that's why they say to get tested early and often. It comes out of nowhere and you can have no symptoms the whole time when you have the best chance of beating it.

-jk

2007-11-29T22:01:00.000-08:00

Take that 5:00AM! I did manage to get up and go work out this morning, although like I said I had to cut it a little short to get to work on time for a training. I've been finding it harder and harder to stay motivated. I just feel like I'm getting more and more tired. The workouts definitely make me feel better though, so I need to keep it up.

Working out must be working though. I went to take my rubik's cube apart so I could spray some lubricant in there so it would turn easier and I broke the damn thing. Snapped one of the corners.

I ordered 3 books a few days ago on living with an ostomy (2) and dealing with ulcerative colitis (1) and they arrived today. One of them is more on the humorous side and another is more on the "how to deal" or "what to expect" side. The third book is one man's story about living with IBD. The initial impression is that they all look very good, but I'll write more about each one specifically after I have read it. I decided to start with the humorous one just to liven things up a little. It's titled "I'd like to buy a bowel please" by Brenda Elsagher. I should put an Amazon link on this page so I can get a shiny penny should somebody out there buy a copy.

Actually I was thinking of making my family read the 3rd book. Some of them understand already what life is like for me to a certain degree, but they obviously don't REALLY understand. It's that whole "walk a mile in my shoes" thing.

-jk

2007-11-28T21:55:00.000-08:00

I haven't had much to report lately. I haven't been feeling all that good, just too tired. I didn't even make it to the gym on Tuesday like I had hoped. Well, I probably would have gone a little later, but I had a training I had to get to at work so I couldn't afford to be late. Anyway, my plan is to go work out in the morning, bright and early. I still have the training going on, all this week actually, but if I can get my ass out of bed, I'll go lift heavy objects. The training is really screwing up my schedule though, cutting my workout short.

You people that can drink sodas or coffee to wake up in the mornings have no idea how easy you have it. Try getting up a 5:00am, without your coffee, after a crappy night's sleep.

My stomach has just been blah lately too. Probably just from the lack of sleep and stress, but that's not helping any.

Anyway, the important stuff. I was hoping to schedule the surgery for the 11th of December, but that date is unavailable. So now it's either the 4th or the 19th, or I have to wait until January. From everything I've read, the longer I wait, the more I risk the cancer metastatizing, and the poorer my prognosis becomes, so speed is of the essence. The 4th means I'll be feeling a bit better by Xmas, but less money saved up and it just feels rushed. The 19th means I'm likely still in the hospital on Xmas but an extra paycheck to help see me through the 8 weeks recovery time. Waiting until January feels kinda like playing russian roulette. Probably the 19th.

That's all I know for now. I gotta try and get some sleep so I can get to the gym tomorrow.

-jk

Testimonials

2007-11-23T17:27:00.000-08:00

I mentioned a while back that I wanted to write a blog on my problem with testimonials and alternative medicine in general. As I see it here are some of the issues. When you hear about a testimonial, you're hearing about the 1 case that was successful. Maybe there are hundreds of testimonials, but those are probably a small sampling of the total number of uses. You rarely, if ever, hear about the cases where it doesn't work. You hear about the 1 guy that had good luck by eating carrots and having his eyesight restored. You don't hear about the thousands of people that do the exact same thing with no results. So and so drank some herbal remedy and his cancer went away. How many other people drank that same tea and died of cancer? I've listened to a LOT of testimonials over the years, and tried most of the products being touted. In general none of them have worked, at least not enough to be called effective. The question is, has there ever been a case where the person touting testimonials for a cure, after hearing it didn't work for me, included my "anti-testimonial" in a subsequent sales pitch?

Am I saying I only want to do things that are 100% proven effective? Nope, not at all. What I'm asking though is should I postpone something that has a good chance of saving my life in order to try something based on the hearsay of a few people? And uneducated people on top of it. The doctors were uneducated too, before they went to school, and yet people somehow think the doctors are less knowledgeable than these people that have no medical education whatsoever.

To further complicate things, people are not inherently all that bright.... just look at advertising. People don't understand things like proper testing methodologies and statistical analysis and the like. People just say "hey, I had this problem, ate that fruit, and now my problem is gone... must have been the fruit". Abracadabra, Testimonial. They don't always look at what other changes have been going on in their life lately. They don't look at the fact that they've changed their diet or lightened their work load or started taking some new medicine months before that took a little while to kick in... or maybe all 3 with a half dozen other possibilities. In their mind, they did A and saw result B, so A must cause B. If it were that easy, we'd have no use for the FDA. It is NOT that easy though. Changes and cause and effect need to be measured over time accounting for many more variables than the average person is ever going to consider.

You want a testimonial? How about Aspirin works great for getting rid of headaches. It works for the vast majority of people just fine, so it must be good. Never mind the fact that some people experience a few side effects and get no benefit from it. Never mind the fact that it is associated with a potentially fatal disease if taken by children. There's more than enough testimonials out there to say you should take it. I personally get much more benefit from Advil, so that testimonial is worthless to me.

You want another testimonial? How about if you have ulcerative colitis you should take a prescription drug called purinethol. It works very well for most people, suppressing symptoms with few side effects. Sounds like there are probably a lot of good testimonials for that, in fact I KNOW there are. I tried it too, and in my case, it caused pancreatitis and my weight plummeted to 139 lbs. Another testimonial that is worthless to me. Actually, worse than worthless since taking it was heading me toward really bad times. The difference here though, is the doctor DID include the "anti-testimonial". He told me about the risk.

How all this pertains to alternative medicine.... I do think maybe some alternative medicines might work in some situations. Maybe they would work in mine, maybe not. I'd much rather drink a pot of tea every day than have a doctor remove my intestines. Hell, I'd drink muddy water if I could keep my intestines. But will any of those alternatives save my life in the next couple months guaranteed? And are you willing to bet my life on it? If not, then I might as well have the surgery, and in that case, who needs the alternative? If I had plenty of time to test the waters and sample the selections and see which one showed itself to be effective... and if I had a billion dollars I'd be a billionaire.

-jk

2007-11-23T17:10:00.000-08:00

Think of the top 5 or 6 things regarding food that will make you feel like crap. Like maybe pizza gives you heartburn. Or you're alergic to milk or chocolate. Whatever. What, don't have 5 or 6 things? You lucky bastard!

For me here's the top 6 list.

not eating on time, when I'm hungry
eating small "snack foods" like hor's dourves... because I take fiber supplements with every meal, but usually not when eating hor's dourves or snacks.
greasy food / fatty food / fried food
high sugar foods like desserts
alcohol
eating too much

In no particular order, those are the things that make me feel like total crap. They are the things that without fail make life more difficult. They all set me back longer than just the normal recovery time. Drinking alcohol for me isn't just about recovering from a hangover. Hunger pains aren't just about getting some food in me and I'm fine. In all cases, it's normally a full day or 2 before things start to recover.

With that in mind, Thanksgiving was good. I didn't make it to the gym that morning, just too much that needed to be done. For the first time, I deep fried a turkey and it came out pretty good. Well first, I was starving during the day (*1), so at some point I started eating some of the triscuits and cheeze that were out (*2). We baked one turkey and fried the other, and both came out really good... and we managed to NOT set the house on fire, so that's an added bonus. Had turkey (some of each) and mashed potatoes with gravy (*3), rolls and butter (*3), and topped it off (*6) with a nice piece of chocolate pie (*4). There was alchohol present but I was not drinking.

It was good, really good. By 8:00 last night, I started feeling like crap. I had some small hope that I'd make it to the gym to work out, but by morning it was obvious that was not going to happen. Still, after an unpleasant few hours this morning, I've been feeling better.

Still no decision on surgery. I've been thinking Tuesday is just too soon, but maybe the next availability, which I think is not the following Tuesday but the one after that, might work. I heard about a "chemotherapy flush" sort of thing today where they stick a hose down you and flush you with chemotherapy chemicals much like you might flush a radiator. I guess it's supposed to kill the cancer by flushing it directly rather than waiting for your blood stream to deliver it or whatever. Do they do that sort of thing? Would it work in my case? All very good questions.

-jk

2007-11-21T08:37:00.000-08:00

I've been thinking, I should have sub-titled this blog "The shit I go through because of the shit that goes through me." Sorry, just struck me as funny.

So I haven't made any decisions yet on what to do, about life, literally. I know I'm going to have to really fight hard to avoid analysis paralysis.

Imagine this. You're in a small airplane at night flying over the United States when you suddenly have engine trouble. The plane is going down and you need to decide whether you put on your parachute and jump, or try to survive a crash landing. Statistically you might be better off surviving the aftermath and being found by staying with the plane and riding out the crash landing, but statistics are worthless to the individual. As my doctor explained, statistics only work in a population. A population may have a 60% chance of surviving, but for an individual, it's either 0% or 100%. You either do or you don't. The fact that some people survive plane crashes means nothing to the individual that dies. Each situation is different, as is each person. So, what to do. If you decide to jump, you may die because doing that at night is not easy, but realistically, your chances might be better. Right now you're high enough that you CAN jump with the best chance of survival. Or you could try to ride out the crash. If the terrain below is level and clear of obstructions (unlikely, but possible), that'd be easy. If there's trees and boulders and whatever else, that could be suicide. If you wait until you are lower to see the terrain, it'll be too late to jump, so you need to decide now, in the dark, with no time to consult Google. What do you do? Put on the parachute and jump, or buckle up and take your chances?

The parachute is the surgery. Riding out the crash is alternative medicine. If I'm going to jump, the sooner the better. If I wait, things will progress to a point where I won't be able to jump. Maybe you or someone you know rode out the crash and survived. Does that mean I will? Most people with ulcerative colitis have good results with one of the many different types of medication. Even though statistically those medicines should work great on me, in my actual case, they don't work and the last one started causing pancreatitis as well.

Analysis paralysis. I'm late for work.

-jk

Diagnosis - Part 2

2007-11-20T21:05:00.000-08:00

I haven't blogged the last couple of days mainly because I didn't have much to report and no spare time. I felt ok, not great, not too bad.... just tired really. Always tired. I just don't have enough time to get it all done.

Today was another busy day, with stuff to report though. I got up at 5:00 AM and went to the gym. That was good, although I could have used another 30 minutes at least. As I've said, I feel better on days I work out. It's not just the general "feel better" feeling that you get from working out. It's also that my colitis seems better on days I work out. Maybe it's the stress relief, maybe it's my imagination, maybe it's something else entirely. I wish I had a schedule that let me work out every day without losing sleep or what little leisure time I have. Maybe I need to get a job as a personal trainer.

Anyway, in the afternoon today I had my doctor's appointment with the surgeon. My ex went with me (thanks!) and we got a chance to ask questions. Lots of people have been telling me I should be taking alternative medicine cures of one form or another. While those may work in some cases with varying levels of success, my doctor explained that if I want to do any of those things, I can, but that doesn't stop the fact that my colon needs to come out, now. He said my best chance for survival is if they remove the part that currently has cancer. Doing any less is running the extremely high risk that it'll spread (not if, but when), to an organ that will kill me. The liver is almost begging for it, but it's certainly not the only candidate.

Actually, what he said was a lot more complicated than that... what he said was he won't know the extent of what needs to be done until he's in there. He examined me for the potential to do what is called a J-pouch, and from what he knows right now, that is an option for me. But once I'm under the blade, he'll find out exactly what needs to be done. If the cancer is too far spread, they won't remove my entire colon because my life span will not likely be long enough where colon cancer would be much of a risk. In that case they'd just take part of the colon and re-attach the plumbing and good luck. That's less likely, but a possibility.

If the cancer hasn't spread beyond the colon, they need to take out the entire colon because part of the colon has cancer, and parts of the rest are turning cancerous in the very least. So in that case my choices are an ileostomy or a J-pouch, each with its own list of pros and cons. A J-pouch has some possibility of cancer and "pouch-itis", and has the added joy of 6 or 7 trips to the bathroom each day for most people and as much as double that or more for some. An ileostomy doesn't have any possibility of cancer or the trips to the bathroom, but you have a bag on the outside of your body. As with any major surgery, other complications are a possibility. Geez, can I have door 3 please?

As an aside, there's a commercial playing on TV quite a bit these days about "Living with Ulcerative Colitis"... it almost makes me laugh. The guy on the commercial says "I'm going 6 times a day". Damn dude, you don't know what rough is. Six times? Hell, that's a pretty good day for me.

If the cancer has spread to any lymph nodes, chemotherapy will likely be needed. We all have heard how much fun that can be.

So, he said things like alternative medicines are fine for helping in the healing, but they won't heal the cancer that is in there now. He explained how cancer cells start out like normal cells and through a series of gene mutations (7 or 8 in total) they progress through different stages of cancer. He said my best chance of survival is to first remove the cancer, then do what I can to help heal. Don't remove the colon, the cancer in there will spread and kill me. Remove only the part that has cancer now, and the rest will turn cancerous soon enough. Remove all of it, and I won't have any chance of colon cancer anymore. Or something like that. I wouldn't quote me on the specifics, I'm just repeating as best I remember it.

Anyway, he said I could do it when I was ready, but the longer I wait, the more chance that it'll have spread and my outcome will be worse. As early as next Tuesday, or as late as right after Xmas. My down time is going to be 8 weeks. EIGHT WEEKS. Damn, that sucks. I'll likely be able to collect some medical disability during some of that time, but as anybody that has ever had to go on temporary disability knows, they don't pay you what you would have made at work, they pay you a percentage of your pay. If you're basically living paycheck to paycheck, good luck paying your bills. What really sucks is I've worked SO hard to clean up my credit over the last few years and this is not likely going to help that any. So if you feel like making a donation to the "Jim's being disemboweled" fund, now would be an excellent time. :-)

-jk

2007-11-17T13:37:00.000-08:00

First off, thank you so much for the words of encouragement and well wishes I received from everybody the other day when I sent out the email. I really appreciate it and it helped to convince me that spreading the word was worthwhile.

As for me today, I'm feeling pretty good. Didn't sleep that well, but got up this morning and went to the gym and had a good 2 hour workout. Felt pretty good, although I could use a nap now. I need to find enough time to do that more often.

It amazes me how inconsiderate some people are. While I was at the gym, these young guys, probaby in their early 20's, were waiting for the basketball court to be available. This one guy in particular was bouncing the ball repeatedly, making an effort to bounce it really hard. Sounds innocent enough, except he was doing this inside the weightlifting area. Every once in a while, the ball would get away from him and he'd just go get it and continue. More annoying though was that the noise he was making was starting to drown out the music playing. I actually turned up my headphones to drown out the noise of his basketball. It just amazes me that he had no concept of the fact that people were there to work out and the music was playing for a reason. It's much easier to work out to music you enjoy rather than some jackass bouncing a ball.

Anyway, my mom stopped by with some information she and my brother have found regarding alternative cancer treatments. My dad has some ideas about alternative remedies, as does one person that left me a comment and probably quite a few other people. I appreciate all the investigation people are doing on my behalf, truly I do, I just don't know what to do with it all. It'd be so much easier if I KNEW what would work. I don't have a lot of time here, so starting something that MIGHT give me results in 2 years just means I'll have a healed dead body. If I had 2 years, or 6 months for that matter, I doubt my doctor would want to operate in 6 weeks. It'd be nice if I had the time to sit around and read up on all these different treatments and spend time investigating each one, but by the time the work day is done, I find less energy to sit at my computer sifting through bogus remedies. I'm sure they're not ALL bogus, but just because there is a testimonial from somebody saying some treatment worked for them, that doesn't mean a damn thing in my opinion. Anyway, I think I need to start a separate blog about my opinions on alternative medicine and testimonials since that is where this whole thing is heading. I also want to add a list of "remedies" I have tried for my ulcerative colitis, so you can see that I'm not quick to discount alternatives. All coming soon.

-jk

2007-11-16T08:41:00.000-08:00

I've been struggling a little bit with the idea of how vocal I want to be about my problems. I mean, I know this is a public blog and all that... I'm more talking about sending emails out to friends saying "I have cancer" or whatever. It just feels kinda like being an exhibitionist. I've known other people with serious medical issues on their plate and they never seemed too free with what is wrong with them. If it was something more like the plague or nuclear radiation sickness or maybe bitten by a radioactive spider or bombarded by cosmic rays that gave me super powers... but no, colon cancer. How un-fun is that? Anyway, I'm probably sending an email out today,which is why this is on my mind at this moment.

Otherwise, I'm feeling ok today. Didn't sleep very good, up a couple times during the night. I don't feel like I'm quite back to normal after the colonoscopy. Close maybe, but still a little bit blah and sort of unstable. The stress probably isn't helping that any... and neither is feeling like everything is up in the air. I need to meet with the surgeon to know what's going on there and need to meet with my doctor to know what the results of the cat scan are. I also need to start banking blood, according to my doctor. He said I should start banking my own blood to lessen the need of a transfusion when I have my surgery. It's too easy to just not think about all this crap and put it out of my mind, but that's only going to make my problems worse in the long run. Hell, not even in the long run.. in weeks from now.

The weekend is here though, so I'll get to the gym tomorrow and that should help. I'm pretty much back on track with going to the gym, so tomorrow should be a good workout.

-jk

2007-11-14T22:04:00.000-08:00

The question has come up a few times now about why they can't just do a resection where they just cut out the piece with cancer and sew the rest back together. I think the problem has to do with the amount of damage and amount of cancer. If it was just a small tumor that hadn't penetrated the intestinal wall, maybe they could. In my case, it's not a surface mounted tumor but instead it's the cells of the intestinal lining that are turning cancerous, and the "good" tissue left is "ulcerative". So, even if they did remove just the cancer parts, and even if they were able to stitch the rest back together enough, what I'm left with not only has ulcerative colitis still, but has now shown a tendency toward cancer. I would guess that the likelyhood of getting cancer again, which is already very high in people with ulcerative colitis, would be too high to consider.

Really though, I won't know any of the "real" reasons until I meet with the surgeon, and I'm supposed to meet with him next Wednesday.

As for when this is all supposed to happen, right now the thinking is within the next 6 weeks... so Merry Xmas. Again, I'm sure the surgeon will have more specific ideas.

-jk

2007-11-14T08:05:00.000-08:00

Feeling pretty good so far this morning. Got up at 5:00 AM and made it to the gym. Had to cut the workout a little short because I have a meeting this morning, but it was still pretty good. A bunch of treadmills in the back room are broken so I had to use one of the ones in the front.... it always seems like I can run farther, easier on the front treadmills. Not sure if it's because the incline isn't set right or what. Anyway, good workout.

When I told my friend about my medical problems last week, his comment was that it sucks that after finding out such dire news, I still have to go to work. He said "You shouldn't be working! You should be traveling to doctors, meeting with specialists, trying to get cured." Damn, how true that is! How much would it suck if you lost organs, or worse died, only to find out that a specialist nearby could have cured you with some new treatment? I'm sure it happens more often than I'd want to know.

Last night while talking to my brother, he commented on how he can sympathize and even imagine what I'm going through, but can't really put it in perspective enough to identify. He recently lost someone very close to him and until that happened, he couldn't really understand how much it hurts to lose somebody close. It's true I think. Until you've been dumped by somebody you love, you don't get it. Until you've had somebody close to you die, you don't get it. Until you've been diagnosed with a something that at the worst is going to end your life early, and at the best is likely to make it much more complicated and much less pleasant, you don't get it. Don't get me wrong, I'll adapt as I think most people do, and people often imagine things to be much more difficult than they turn out being. Hopefully there won't be much more I "need to get".

-jk

2007-11-13T09:14:00.001-08:00

So far today, I'm not feeling too bad. I didn't make it to the gym this morning, which sucks. I got up on time, but figured I just didn't have enough time this morning to work out, so I'll try and get there tomorrow. I definitely feel better on days I work out, as long as I'm getting enough sleep.

This morning I'm going in for yet another test. They're doing a cat scan, because apparently we haven't found enough stuff wrong with me already. So, yeah, barium, it does a body good. I drank half last night and need to drink the rest in a half hour or so. Wish me luck... if it turns out bad, I'm going to blame you.

Otherwise, yeah, I'm feeling ok. Which is kinda funny. There's a lot going wrong right now, and for all intents and purposes, on the outside you might never know I wasn't completely healthy. If you know what to look for, you'd definitely see signs. Maybe some day I'll shock some of you with "a day in the life of".

-jk

Diagnosis

2007-11-11T20:50:00.000-08:00

I've considered starting a real blog a few times in the past. I used to have a small, low traffic blog a while back that was just between me and a few online friends, but I'm talking about a real blog. A blog where I talk about my life, not just exchange jokes.

The reason I've considered it is this. I've had ulcerative colitis for close to 20 years now. Between the difficulties of the disease and difficulties of the medicines, I thought maybe writing about it might be theraputic for both me and for somebody else going through what I have gone through.

Well, because I lagged and didn't start the blog back when I should have, back when the worst I could say was "I've been living with ulcerative colitis for X years", I have to start it now when I wish THAT was all I had to say. No, now, I have been given a harder pill to swallow. So now, I'm going to cut to the end and tell you about my most recent news, and then I'll fill in earlier details later as I have time/energy.

So, it goes like this. It was back in 1988 I believe when I was diagnosed with ulcerative colitis. Life has at times been very hard, but survivable. As I said, I'll fill in some of the details later, like getting down to 139 pounds (and being over 6'), and "who designs building with only one bathroom?"

For now though, jump ahead to October 2007 when some blood tests for another problem showed "abnormal liver function". After more testing, it was determined that I have "Primary Sclerosing Cholangitis" which, as I was told "is not a good diagnosis to have". As I understand it, it's found often in people with ulcerative colitis, sharing the same cause, and has a diagnosis that commonly ends with "you'll likely need a liver transplant in 10 years or less and you have an increased chance of liver cancer."

My first thought was "Damn, that sucks!" Actually, the rest of that day (my doctor called me on a Sunday), and most of the next day, I think that was the G-rated version of what I thought. By Tuesday though, I was trying to change my focus. I started really trying to focus my thoughts on "A lot can happen in 10 years. They can already do transplants, so who knows what kinds of stuff they'll be able to do in 10 years... that's a long time." Of course I remember thinking that when I got ulcerative colitis and I'm still struggling with it 20 years later, but I'm trying to remain optimistic.

OK, I pretty much had moved on from that diagnosis when I went to have a colonoscopy in the beginning of November 2007. The results are in, and they aren't good. Multiple biopsies were taken and it shows an adenocarcinoma (cancer) and "at least high grade dysplasia", or early cancer. Actually, the pathology included things like "moderate chronic active colitis with extensive ulceration" as well which would normally make you freak out if it weren't preceded by cancer.

So what happens now? Well, according to the doctor, and the couple of doctors that he had review his findings and sign off on it, I need to have my large intestines removed. Soon! It was supposedly a good thing we caught it when we did, which is why it's so important for people, especially those with ulcerative colitis, to have colonoscopies. Blah blah blah! To be honest, while logically I know I should be grateful we caught it early, I really don't feel very grateful. I feel like kicking the doctor in the fucking balls. No, not really, but dammit, what the hell? Remind me later to tell you how fucking unfair this whole thing is.

So yeah, they're going to take it out unless I pull a rabbit out of my ass....well probably then too. How is this going to affect my life? I'm not sure, but it can't be too good. After they take it out, is that the end? No! I may need chemotherapy or radiation too, but we won't know that verdict until surgery. It is the end of the possibility of colon cancer. It is NOT the end of my liver problems however. Removing the colon removes the result of my ulcerative colitis, but it does not remove the cause which is likely causing my primary sclerosing cholangitis too. I need to meet with the surgeon that will do the cutting, probably some time next week, so I'll know more about how this will play out after that.

That's all for now, I need to use the bathroom.
-jk