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

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

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

-jk

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

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

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

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

-jk

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

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

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

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

-jk

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

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

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

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

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

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

-jk

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

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

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

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

-jk

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

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

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

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

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

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

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

-jk

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

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

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

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

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

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

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

-jk