Monday, December 28, 2009

Back Home From the Holidays

We returned home yesterday from the holidays.  It was wonderful to be back home and even better to actually feel well enough to enjoy it.  As the week progressed and the weekend came, the pouch was working better and the bleeding was lessening by the day.  I was able to enjoy those FANTASTIC sugar thrills and not pay the terrible price I was a few weeks ago.  Ironically, it was Christmas day that I tried using the hydrocortisone while being mobile rather than prone:  This made a major difference in the feeling of the cuff of the pouch and the bleeding.  This could be just a function of two weeks of meds or direct application or a gift from Santa:  I'm not going to pick, but I will say I'm thankful for it.  We're still a ways away from 100%, but were heading in the right direction and that's a good direction to be in.

While still on the steroids, I'm starting to swell like a tick.  I've picked up my wife's pregnancy cankles and my jowls extend well past my skinny forehead.  I've been trying to gain weight for nine months, and now have accomplished that at a pretty good pace.  I can't say I didn't get what I asked for, I guess I was thinking of it in a different way!  I'm not nearly as cold as I was a few weeks ago:  I haven't had this much padding in about 7 years.

There is still one week until the followup, so patience is prevailing.  I know that I won't get much for answers next week:  The truth will be told once the medication has rid my system and we try to survive on our own.  Until then, step by step and slow but sure.  To a happy and a healthy new year... !

Saturday, December 26, 2009

Sugar Revisited

How is it possible to make it through your grandmothers' houses on Christmas without eating sugar? For this sweet tooth, it isn't. I was able to hold out until about 2 PM, which was only a few hours after getting there, before breaking down. Brownies, chocolate chip cookies, M&M cookies (personal fave), peanut butter buttons, smores bars (my wife doesn't help either), and the list continues.

I dabbled a little into the brownies, then moved houses and dabbled into the M&Ms, then back and some more chocolate chip cookies. I truly expected to be up all night with the runs, but the evening passed without event. Even with a total carbohydrate breakfast yesterday, which did make lunchtime a little "active", there was only maybe one extra movement all day. Either Santa brought me some cheer, the drugs are actually working, my pouch is adjusting to my foods, or some wacky combination of the above. I'm not sure I'll ever know the answer, but future trials will give a better statistical result!

If I'm able to get back on the sugar/carbohydrate train, you'll see me smiling like you haven't in months! For know, we'll control our excitement, not overdue and abuse a good thing, and see what baby steps gets us.

I hope everyone out there got what they wanted during this holiday season. I know I did, and it wasn't the sugar rush.

Thursday, December 24, 2009

The Point of a Journey

Journey versus Destination:

This has been on my mind for a while, so I took some time to formulate. Many times, we get so focused on the where we are going, we forget that we are going and look around. "Smell the flowers" goes the popular adage, which is very true. There is more to learn from the journey itself than the actual arrival, probably because when you actually get there, it's not as you expected. Do not focus on the being, but on the going: It's likely you'll be more happier in the going in the end.

I've noticed this in my thinking regarding this current surgery and how the recovery seems to be a guessing game. Surgeons and doctors run on experience, gut feeling, deduction, and percentages. If only people were like computers, then ideally they would be right nearly 100% of the time, but we aren't. I've seen from so many others having this surgery that everyone reacts differently to meds, to procedures, that it's hard to know how the person is going to react. Ideally, we shoot for the most likely to succeed, but the patient may not respond.

This is where the patience of the journey must come to play. As the patient that has been slow to respond to initial diagnosis, we've had to change course, which takes time, endures more pain and discomfort, and keeps me from my destination (a working, care-free pouch) for longer. Understanding this journey, this "randomness" of how the body reacts, has been what keeps me grounded that it may take longer or may not work at all. The uplifting side is the trying. The going. If I had a working colon today, what would I have learned in the last nine months?

Holiday Travel

Traveling took a lot more out of me than I had thought, especially since I just got to sit there while the Mrs. drove. It is great to be home and see the family, so the pain and discomfort is barely in the forefront. The hardest part is keeping on a schedule of meds and food. Food: Oh, food. There's sugar temptation everywhere! One day down, 3 to go, and unlikely I'm gonna make it!

I'm starting to swell from the steroids: Everyone says I look good, so that must mean I must have looked horribly skinny before or they're lying: I'm going to go with the former. I guess it's true in the eye of the beholder! My sleep has been disrupted as well from the meds, but I do get a few hours of unadulterated sleep, which is enough to keep me going. I do feel tired, but for some reason, my mind continues racing. [This, btw, is how I typically operate, so I shouldn't be surprised here, just that it's worse than usual.]

I was able to go 9 hours between movements last night, which is a record since the surgery. There is still some cramping and pains, but they come and go: It's hard to figure out when it's just acting up or actually full. I'm still working out that detection. The bleeding has subsided to only as a result of movement and not actually in the toilet, which is a definite plus. It's still a little tender, but not nearly as frequent as before. There's still those "UC" times when there's urgency, but with a little concentration, I can "shift things around" and delay for a little bit.

Eggs: You seem to no longer want to hang around. For this, you will be replaced by Egg Beaters. It's been a wonderful run of many decades, but sadly, off you go. Tarnish some other person's cholesterol. Maybe if you learn to behave we can be friends again.

Pork: We're still good, just don't act like eggs and we'll get along fine. [I'll fight to keep you, so don't take advantage of me.]

Tuesday, December 22, 2009

Call Back

I've made it through the weekend with little sleep and a decent amount of bleeding. Yesterday and today have been limited in bleeding, mostly limited to post movement, which leads us to believe it's just massive hemorrhoids. [Whose idea was it to surround that whole area with big veins and thin skin?] Daily naps should be in order, but somehow being exhausted doesn't let me sleep. Hats off to those out there, especially you SAHMs, that juggle the surgeries and the kids!

The doctors have noted that the increased bleeding was likely a result of the antibiotics and steroids, which tend to make things worse before making it better. If this holds true, then we are pointing in the right direction and the bleeding should continue to subside. Thankfully, just a day before heading out to see the family for the holidays. As Dad always said, better late than never. They are continuing the treatment for another week to get me through my next appointment on January 5th.

I'm swapping out the A&D ointment for some zinc oxide, also by A&D, but not the stuff we always used for diaper rash. The zinc oxide is the same used in the Calmol4, which seem to help stifle some of the post-movement bleeding. I'm looking forward to carrying a man-purse over the next couple of weeks to hold the assortment of creams/wipes/supps/lotions: I may just put the diaper bag back into service and carry my laptop with me as well!

Be safe and enjoy the holidays. Spread some cheer!

Sunday, December 20, 2009

A Healing Plateau

If there is such a thing as a plateau in training, is there such a thing in healing? The past few days have shown little improvement since the first few days and things have sort of settled into a pattern. This morning, I realized that the antibiotics are causing me to bleed: Not profusely, but enough that we need to verify with the doctors. Originally I thought it was the steroids, but it seems the steroids help stop the bleeding.

I'm down to only one percocet a day, typically in the evening, when the combination of the bleeding, steroid burn, and general pain is more than I'm willing to deal with. My movements have at least become somewhat "scheduled", so I can plan around when I need to use the toilet. Thankfully, I only need to get up twice at night now to empty, and even those are complete. It's the fact that it wants to be empty keeps me awake, so I oblige so I can go back to sleep.

I'm not sure if it's the meds, or the bleeding, but I do feel general fatigue and malaise in the evening. The mornings are good, so I try to maximize my "doings" then before I start to sputter out. I've only had one or two "steroid rages", which has been good: Thankfully, they aren't oral steroids, for I'm told (sorry Ma) that I'm a raving lunatic on them!

One good step is my weight is on the rise. Not sure if it's water weight from the steroids, or actual fat/muscle, but it's on the rise. Let's hope I don't have one long pee after coming off them and losing it all! :^)

We missed our family dinner this weekend, due to both my current feeling and the weather smothering the northeast. We're hoping the week gets better to make it back home for the Christmas holiday. Best wishes to everyone out there this season and may your holiday wishes be made! (Especially for you that have recently had surgery!)

Wednesday, December 16, 2009

A Step in the Right Direction

Two full days of antibiotics and a few doses of hydrocortisone enemas seem to have started to right the ship. I'm cautious that we are only a few days in, but already things show improvement. My movements have been almost cut in half in frequency, which is a good sign and the output is much thicker with much less pain. Water absorption has also increased, almost doubling my urinary output, which is great for my kidneys and the thought of having another kidney stone. Unfortunately, due to the scope, I'm a little dilated and having small accidents. Thankfully, my son has similar issues, and comforted me with a "It's okay Daddy" and a pat on the back, a little comforting, but a little patronizing all at the same time. Guess he got my sense of humor.

After taking the steroid enemas, some output has contained some blood, typically in the first movement after taking. My hope is that's the inflammation in the pouch relieving itself. Ironically, this reminds me of my UC days, with a little less pain but at least under control. Having to do two enemas a day now, it has become humorously referred to as my "visionary" position. Rev Run uses his bathroom: Why can't I?

Last evening was the best night sleep since surgery, with only two movements and the ability to just hold and roll over and go back to sleep. Since having the incision stitch removed on Monday, I've been able to return to stomach sleeping, which definitely helps as well. This was something I did miss while having the ostomy, but something that could be lived without (if I had to.) I did entertain some more sugar last evening to see the result and so far shows improvement too.

Coming into the holidays, I'm hoping this trend continues, as travel is much easier when things are under control. If I only get one thing for Christmas, just get me home and back.

Monday, December 14, 2009

Fleet and the Scope

I had heard that Fleet burns when used inside a pouch: I was able to confirm that last evening, as I blasted 3.5 oz of battery acid (okay, just saline laxative) into my pouch. It sort of sucked going in, but it felt like it was power washing my canal on the way out. Thankfully, a mouthful of towel was able to suppress the screaming curse words that were being projected at rapid fire in the bathroom. I need to mention that to the nurse that said "We've never heard it burns, but I'm sure you'll let us know." Yes, I will let you know.

I think the most important realizations I've had during this journey have occurred at odd times. For instance, you can get a whole new perspective on the world while on your knees on your bathroom floor with your head on a towel and a plastic bottle stuck in your rectum. (I'm not saying to use this to replace your downward facing dog yoga position, just that I happened to be there.] Last night, my thoughts went again to a woman I had met just before my surgery who had recently suffered a horrible rock climbing accident. She was miles from home and miles from family and all alone at a local hospital. We spoke a few times, just to help pass the time and offer what we could.

She had broken her leg, her pelvis, her other arm (thus ruling out crutches) and a few other bits and pieces along the way. She had undergone many surgeries (more to come) and was in between jobs and without medical insurance. She was always upbeat and cheery: She always had a laugh and a smile to share and was able to find the bright spot in any conversation. Every time I hung up the phone, I would think to myself, now there is a hero: There is someone who truly meets it head on and takes control of a situation. Of course, there are ups and downs, but a steadfast rock and someone who truly has a more difficult situation than I. If she doesn't complain, what right do I have? She called me last week, to see how "I" was healing. Even in her state, she still took the time to check up on me.

Thinking about this allowed me to formulate other "what did I learn" points:
- If you think you would rather trade your problems with someone else, you need to reevaluate what problems you really have: You have no idea how someone else has it or with what they have to deal.
- Don't let your "bad" days outnumber your "good" days. If they do, you're focusing on the wrong material. If you only have wrong material, you need to get different material.
- Dedicate energy to the positive. The negatives are just energy sinks: They serve no purpose other than wasting what energy you and those around you have.
- Spread the positive. That person you want to give a piece of your mind may have just had the worst day of their life: Offer something positive to pay it forward, or don't offer anything at all.
- You are not the most important person in the room: Just another that is there. [To that end, is there really any "most important" person in the room. If so, who is defining what criteria and who is voting?]

The scope was scheduled for 7:30 this morning, so we were up at 4 AM this morning to get to the hospital in time. I'm not sure what anesthetic they used, but I typically get to fight the way out (and of course, enjoy the ride), but it was like someone hit a light switch (drag.) I didn't awake for another 1.5 hours, so have no idea how long the scope was and faded in and out of consciousness for the next hour. Hospitals these days are not allowing children under 17 in many locations due to H1N1, so the family was removed for the entire morning. I spent my time trying to keep the nurses and doctors entertained.

The doctor noted that he could do a more thorough scope while under anesthesia (me that is) and was able to check out the pouch in detail. He said I had a "roaring case of pouchitis". [Yes, like a lion.] Pouchitis is just inflammation of the internal pouch which can occur for many reasons, but notably it's the pouch not happy about the job that it now has to do. He was unsure how it got out of hand so quickly and this quickly after surgery, but we're taking one step at a time and get this resolved to see if it's going to be a recurring theme. He changed up some meds and gave me some steroids (of course, not the pill kind, but the bathroom floor kind.) Hopefully, in the next two weeks, we will be able to kick this. (Which would be great, as the holidays are right around the corner.)

He also mentioned a "bubble" portion of the pouch that exists near the exit. He's not sure if that's causing any issues, but something we'll keep an eye on. [He mentioned a specific word but with cloudy head, I no longer remember it.]

Off we go, so let's see how the next week pans out.

Thursday, December 10, 2009

Rice Krispie Treats: Not Only For Kids

Yes, Rice Krispie treats are a God send. Ironically, sugar opens me up, but marshmallows tighten things. Go figure. So, let's take advantage! We've ripped through two full pans of treats in the past eight days and I'm looking to start another one either tomorrow or Saturday. Yes, they say there can be too much of a good thing, but I've not yet seen it, especially with this. "Eat up Johnny!"

They cut my antibiotics through the scope next week, so it seems we'll be on a new course of meds after the scope. To what, well, that's part of the journey. Pain in the tailbone still picks up as the day goes on. Today, I did more walking (had to buy some xmas presents) and I thought that would help... Thought wrong. It knocked me out and chased me into a nap, even after sleeping in to catchup on lost sleep last night. For some reason, I try to avoid taking the pain pills, like I'm going to get some medal or award for trying to tough it out. Yeah, the "My wife keeps yelling at me for not taking them and living in pain award": I've got a lock on that after this year.

Thanks to all my old friends and family that have shown support of this blog, as well as the new found friends and fellow pouchers that are making this journey. You are definitely not alone and a big thank you to those of you that helped me through my journey as well.

Tuesday, December 8, 2009

Followup #3 Post Takedown

I had an early dinner last night, which led to an earlier empty pouch, which lead to a great nights sleep. I only got up once last night to use the toilet, but unfortunately, the front that moved through last night reeked havoc on my joints: I think I awoke 5 times last night with just the pain in my shoulders. (Yes, more stuff that's broken or at least doesn't work like it used to.)

I had my third followup appointment post-takedown today. Unfortunately, the CT scan did not show any definite, but was "indeterminate". It seems there is 'something' going on down around the pouch area, thus the pain and urgency, but they are unaware as to what it is. As a result, I will be having a flex-sig scope next Monday and, thankfully, be asleep for it. Typically, they do this awake, but as I could barely handle the digital exam, my surgeon knew I couldn't handle a full scope. So, I get to be drugged up. Cool.

This is an unfortunate setback (or just tacking onto the current setback), but at least it's a step in a direction. The surgeon acts like he knows something, but wants to see the scope to verify. I guess that could go either way (knowing something not so bad, or knowing something bad), but at least we'll be further analyzing and hopefully narrowing the possibilities. I'll wait until the results come back before I get nervous. No reason to freak about something you A) don't know and B) can't control.

Until then, I'll be continuing the pain pills and standard course of what we've been doing over the past few weeks. This is getting close to Christmas travel, which will definitely raise my blood pressure should my XMas be affected, but again, let us wait until we know. I can pop pills to make the drive. I'm slowly adding new foods and a little more carbs than before to hopefully add a little more weight (which has suddenly begun to plummet.)

I will also be increasing my activity to help out any movement of fluids. I haven't been walking as much as my first surgery (much colder this time of year), but have been going more places in the morning, but by the "witching hour" (2 PM), the body is starting to revolt and requires attention.

Monday, December 7, 2009

Barium - You Can't Stay Here

Yesterday smeared into today with lack of sleep. These two days aren't what the doctor ordered. I had the CT scan this afternoon. Unfortunately, it was an hour from home and barium is not digestible. As a result, it was one of the most painful rides I've had since my step 1 surgery. I could hold it, which means good for the muscles, but the body is still pissy and painful about keeping stuff around too long.

I've got the followup tomorrow, so hopefully we'll have some answers or at least a direction to head in. I can honestly say physically and emotionally, this is starting to wear very thin. I keep telling myself this is all part of the process, but it's getting difficult to see the forest from the trees. Even if this doesn't work out, I won't regret the decision, but at least know that I couldn't handle it if I go with a permanent ostomy.

Sunday, December 6, 2009

Sick And Tired

Well, I called the sick part. Last evening was pretty good, one of the best I had. Only a few trips in the evening, but during the night/early morning, I was in overdrive again. The oxy helped with the pain and slows it down a bit, but it surely isn't magic!

I enjoyed a nice breakfast today with some friends and the family. Got to see other friends from work and play with some R/C stuff [I'm trying to get the little man hooked so Daddy can go buy some.] All was great... Right up until the 'witching' hour. I made it to lunch, but was exhausted and was getting more painful. I managed to get home (about a 20 minute drive), but then it all went out of control. I've been having massive chills and a fever running into the low 100's. My body is spent and my anal canal feels like it was power washed with battery acid.

It's amazing how quickly things go from good to bad. I hope this scan tomorrow shows something, as I'm starting to lose my handle in the evenings. Still haven't cried yet, but I sure do bitch and whimper a lot. [My wife says this is normal behavior, so just assume it's more than usual.]

Saturday, December 5, 2009

Tired (hopefully not sick)

I've made it through the last two days with minimal pain killers, typically only at night. Tried a diabetic supplement (made by Boost). I think the name is appropriate, because that's what it does to your stool: Much like the space shuttle, I could chug one of these and fly around the room. I guess the sugar alcohols are just as bad as sugar for the pouch. Still searching for an appropriate protein substitute so I don't have to eat 1.5 lbs of chicken a day!

Spent an unusual amount of time on the couch yesterday, followed by an early bedtime at 9:30 PM. So much for "boosting" my way through the day. I was running to the john every hour, so maybe that was my workout routine for the day. I did have a decent nights sleep as things calmed down later in the evening/morning. I was in good enough spirits this morning to head out to our favorite breakfast joint. A morning without eggs and pork feels like a morning without sunshine.

Weight this morning was 135 lbs, which is the heaviest since surgery, so hopefully that's fat and muscle and not some random, undrained fluid gathering in places it shouldn't be. I've been getting around in the house well, but the weather has sort of drowned outside walks. I managed to get outside the house this afternoon as well, but seem to be paying for it now: Unless the seats in my car are designed to have a centralized crown. [Think "It" for you South Park fans.] Now, we nap.

Thursday, December 3, 2009

Scan It - The Third

I got the call this morning that they want to do a CT scan next week to see what's up with the pouch. Not sure if they called because I pissed off their answering service or because I call weekly noting that it's not getting any better: It isn't, so at least I'm honest. Either way (or neither), I'm hoping that it answers some questions and puts us in the right direction (quickly.)

The past two days have been the roughest: By the evenings, I'm in pain holding it in and in pain in letting it come out. Thankfully, the oxy makes it tolerable and I can get a few hours of sleep. The rest of the night isn't so fun, but at least I'm not homicidal in the morning. By mid-afternoon I am, which is when I typically go and hide. I thought I had a lack of patience before, but sleep deprivation and pain have a miraculous way of making the rest disappear.

Due to the weight loss and my low calorie intake, I decided to give nighttime snacking another chance. It definitely doesn't help the output of the pouch or sleeping at night. What the hell, I'm not sleeping anyway, so I might as well ingest another 500-1000 calories and enjoy the time before bed.

Trying out some new fiber tablets rather than drinking the sand that I have been using. While the sand works, it's difficult to make portable and easy to tote around. Figuring I gotta carry pills every where I go know, what's another few. I've been making it outside, regardless of the cold. I don't last long, and typically have to hit the john just to relieve the pain, but at least I can participate in some social activity.

Wednesday, December 2, 2009

Roller Coaster

The roller coaster rolls on, trying to figure out where the pain is coming from. Yesterday, they up'd the bentyl (dicyclomine) to help slow down the bowels to allow the pouch to heal. It actually reminds me of prednisone in that it gives me a nasty temper but I get sleepy when I take it. Last evening was uncomfortable and not sure if it was lunch or just additional gas trying to flip my rectum inside-out (yes, it is as uncomfortable as it sounds.)

They were supposed to have doubled the bentyl last week, but forget to give me a new prescription when I left. So when I called on a whim yesterday that it was odd that I ran out between appointments, they realized that screw up and changed yesterday. [That's another week down the drain... actually, down the toilet would be more appropriate.] We'll see what a full week on the double-dose does.

Next followup isn't until next Tuesday, so hopefully the next few days start trending in the right direction; otherwise, we're going to be in the same place we were last week and still won't have any answers. The weight loss free fall seems to have slowed down and I seem to be hovering around 133 lbs. I don't look like the walking dead after my first surgery, but you could still play the xylophone on my chest and ribcage.

The incision is starting to close, or at least scab over. Yes, it's a good size scab (and no, I have no plans on saving this one... back story will be posted later.) This may be a nasty looking scar, as there was so much room in between the folds, so we'll see what it looks like in a few weeks. Thankfully, battle scars don't really bother me, as I'm not typically shirtless (unless I finally nail that underwear modeling gig.)

Monday, November 30, 2009

Weekend Rant

I took a few days off, trying to recoop on some sleep, but that's not really happening. Figured I'd try to save and post with a positive tone, but that's unlikely again today. The Bentyl keeps everything in for about 8 hours: That sounds great, until you figure dinner is due up at 1-3 AM every single night. Been eating rice (and some plain sushi) which stops it even longer. I think this med is going to get investigated with the docs to hopefully cut back so I can at least empty by midnight, or even 2 AM would be fine. Trying to keep away from the percocet, but one a day puts the pain down to tolerable or adds a little sleep in the late morning.

I've been at least making it outside the house this weekend, a breakfast, a dinner (yeah sushi), and some shopping on Sunday. We picked up a new train set for the holidays and did some minor surgery on some older ones that we had. The boy was more than thrilled and thought this was the best day ever. [Although he did say winning the lottery would have made it even better, I had a hard time arguing that fact.]

The output is less watery and the Konsyl definitely helps the bulking. The Bentyl helps with water retention as well, but (ironically) makes it difficult to urinate (how the hell do those two go together?) Maintaining through the day, or even when out has been successful and less painful, although our 3 hour jaunt yesterday did have to make an emergency stop (thanks doughnut shop). It reminded me to my UC days: Scanning the horizon for a toilet, but at least it was easier to hold (or even possible to hold), just a little uncomfortable.

Still have not managed any dairy yet, but have slowly been adding sugar (OMG the Mrs. pumpkin bread is ridiculous.) The doughnuts were a little over the top, so trying to manage some lower sugar items to see how they react. If I can find a sweet spot (no pun intended), I'll be able to add a few hundred more calories AND satiate my sweet tooth! :^) Clif bars on the next on the list: Let's hope for the best and hope chocolate still agrees with me.

I still have a week to go until next followup, but things trending in the right direction, just very slowly. Dropping weight, a pound every few days, so waiting for that freefall to stop. I'm close to my post-step 1 weight, which was terribly low and took many months to recover from. Granted, golfing every week as my "exercise" was a great recovery scheme before, but it's a little cold to be swinging clubs at this point. As the Mrs. suggested, it may be time to join that climbing gym once I get clearance from the docs. They had originally expected Dec 14th, but that may be a little delayed due to the first two weeks.

Friday, November 27, 2009

sugar, Sugar, SUGAR

"I'm in to you!"

Thanksgiving is a day for splurging: So what the hell, let's splurge. I still tried to avoid dairy, but my wife found some vegan desserts that were ridiculous. Unfortunately, the combination of two donuts in the morning (yeah bowties), a vegan brownie, and some pumpkin bread, that was more sugar than I had probably consumed since leaving the hospital. As a result, I was in overdrive and the hope for anything that wasn't loose was a pipe dream.

The sleep has been better, but results in me getting up later: Who eats breakfast at 10 AM? Between that and not having my normal nightly staple of snacks, I'm still dropping weight: Slowly declining to 133 lbs. This is still heavier than my lightest at 127 after step 1 surgery, but 11 lbs lighter than my pre-step 2 weight of 144. Thankfully, I have more energy, but having only 3 meals a day feels like I'm on some freakish diet (do people really do this?)

Prior to the takedown, I was running on a diet that constituted about 3000-3500 calories a day. I'm not sure if I'm going to be able to keep up with that on three meals a day. I see many days (and nights) of trial and significant failure in the near future.

(Special thanks to Gem City Rockers for letting me plagiarize the "Sugar, Sugar, Sugar" lyric.)

Thursday, November 26, 2009

Thanksgiving Morning

Happy Thanksgiving folks! Turkey: check. Gram's famous macaroni salad: check. Donuts: check. Coffee: check. (Okay, the last two aren't really to be part of my diet, but I did show a little restraint.) This will be the first time we try out Thanksgiving at home, by ourselves, in about 6 years. The last event was hardly a success, but was still a blast nonetheless. Hopefully, we learned something; otherwise, it'll be off to the diner.

Last evening's sleep was even better, with only 5 stops between 10:30 and 9:30 this morning. I feel much better rested and the homicidal thoughts that arise after days of sleepless nights have subsided (amazing what pops in your head when you haven't slept for a week.) It was the first night without pain killers since before the surgery and thankful for that. As much as I like them, living a life on them isn't something that I aspire.

Off we go to eat our faces off, stuff our pouches (some bigger than others), and share some time with family and friends. Enjoy and let the next year be even more thankful.

Things I am thankful for:
- My loving wife, for whom I could never do any of this.
- My little man, for whom getting better is a driving factor.
- My mother and my brother, who stand strong, even after the last few years. It does take someone special to look an NG tube head-on time after time.
- My family, who always stands by, checks in, and helps out. I wish I had more things for you to do, I really do. Next time, I'll have more $ and a honey-do list for you next time.
- My friends, who truly care and still can crack and laugh at potty jokes (thank god).
- The opportunity to live a normal and healthy life, which isn't granted to everyone with medical issues. Grab it with both hands and don't let go: You may not get another opportunity.
- The big picture: Not every instance or second is perfect in life. Thankfully, it's made up of thousands of them: If you're reading this, you've got more good than bad, sometimes you have to step back to see the forest.
- A job that offers me the ability to take care of medical issues without any headaches. Not everyone has this ability and it doesn't go unnoticed.

Wednesday, November 25, 2009

Doxy's Moxy?

Well, Tuesday night was the first night of decent sleep in probably 2 weeks. Now, I never got more than 90 minutes at a clip, but when you get a few of them back to back, you quickly appreciate what you've been missing and what you got a glimpse of.

I'm fairly certain this is the working of the wonderful Doxycycline, the antibiotic "that can fix anything", as my surgeon's partner noted. As with the setbacks after step 1 surgery, a little antibiotics went a long way. Hopefully, after a few weeks stint of the doxy, we can part ways and only meet up on random occasions, hopefully separated by many years (much like high school class reunions.)

It was the first morning that I "wanted" to shower and shave since the hospital, and that's a good sign. It's not that I'm against them, but I can't say they are the most important part of my day, especially when I'm feeling like shit. As the day progressed, the need for percocet was only there to assist with a trip out with the family to have dinner somewhere outside the house. Being high in public has a certain "entertainment value", especially when you know you can't go to jail for this one.

Making it through dinner was easy, but the post-dinner "gotta go" and ride home was quite painful. Low and behold, it wasn't gas pains this time, but the pouch literally trying to split at the seams. Thankfully, we were only a few minutes from home and some rather crude jokes allowed me to make it home without having to play Russian roulette. Things have started to stiffen up and, as other j-pouchers like to jest, the play-doh factory was in full effect. I'll spare you the pictures (yes, certain moments I feel words can't describe), but it was the best movement since having the 2nd surgery.

Let's hope that the doxy continues it's magic and see how the evening goes. This would definitely something to be thankful for.

Tuesday, November 24, 2009

Scheduled Followup

Two weeks out and first scheduled followup. I tried to best explain what and where the pain/burning was, but, even with my 'advanced' knowledge of the lower GI system, it was still difficult to explain. After some basic poking and prodding, they still aren't sure what the issue is. They think it may be irritation of the rectal stump or canal area due to liquid output after surgery.

They've up'd my antibiotics to hopefully combat any infection and help with the healing of the irritation. I hope this isn't cuffitis (effectively UC of the few centimeters that are left of the colon), but that can typically be resolved with antibiotics and steroids. I head back in another two weeks for followup and see where we are: I can tell you I won't need two weeks to figure that out. I'll know by next week and sure to do my followup then.

The surgeon left the single stitch in the incision, as he wasn't comfortable with the closure: He was hoping for a little more, but was happy with the way it was looking at this point. I have no idea what the scar will be like, but that is far from anything I care about. We'll think of it as a tattoo, marking some freakish right of passage. Maybe if I work out my stomach muscles enough, I can make it look like my belly is smiling or frowning.

I'm still taking pain meds (especially since people from work have confirmed that it's a good idea) which does help with the pain, but doesn't slow any of the gas pains. I typically avoid them until the afternoon, evening hours, when things are quite active. Thankfully, learning to pass gas has been an easy go and definitely cuts out some of the pain. I don't necessarily go pell-mell at it (especially in public), but it's definitely a feeling you get used to.

I gave the mall a run yesterday with the fam after the appointment. Thankfully, there were painkillers involved, but as they wore off, it was definitely time to go home and take a 2 hour nap (yeah sleep). If I can't get it with the sun down, then I guess it'll be with the sun up.

Monday, November 23, 2009

(Wasted Youth) Sweet Tooth

It seems that late night sweets and a little decaf coffee not only affects the evening hours, it seems to drag into the morning as well. Result: avoid late night sweets (now that's gonna be tough for the long term.) Actually, sugar is bad all day long at this point and makes it difficult to get anything to solidify.

Surgeon followup is tomorrow, so hopefully there will be some answers (or at least a direction) to the pain and urgency that has been nagging for the last week or so. My weight is down to 136 lbs or so: Total drop of 8 lbs since surgery. Still 9 pounds heavier than my lightest after step 1, but not heading in a positive direction. Dehydration isn't a large issue at this point, and seems to be getting better (or clearer, depending on how you see it.)

Pain meds are still a must in the evening to help take the edge off the pain to try and sleep. Still only getting 90 minutes at max, but they feel like a day compared to the other little naps throughout the day. Thankfully, my wife doesn't hear me everytime I get up, nor does she comment about it when she does. [Yes, she is the greatest person in the world.]

The incision, supposedly the only thing that should be healing at this point, is actually going very well, and barely open at this point. The skin hasn't connected yet, but the underlying tissue has been cooperating very well and the blood supply has been great. [Note to self: Things don't heal nearly this well if I'd still be smoking.]

Sunday, November 22, 2009

Sleep: Where have you gone?

More fitful nights of sleep (or lack of sleep). Last night, I was up 9 times between midnight and 7AM. Even when I stop eating at 6PM, still have no idea how long food lasts around: No other meal hangs out for 12 hours, but dinner does. Next we try eating some snackies after dinner and see if that helps migrate southward so I can get some sleep. They say to not use percocet as sleep medication, but it's the only thing that keeps the pain at bay long enough to actually take a nap. (That's all they really are, just naps.)

It's getting easier to control throughout the day, mainly by controlling the amount of gas buildup. Mind you, I'm not 100% yet, but fast on the gun to know the difference. Adding fiber to the diet has definitely helped keep things stiffer and keep me less dehydrated. This seems to be one of the biggest contributor to pain: Thankfully, one of the easiest things to (try to) control. Some things are trending in the right direction, so I'll take that.

I'm headed out this morning to get the curly locks all done up and will be hitting one of our favorite breakfast joints: Still no cheese, but as long as egg has pork, all is still right with the world.

Friday, November 20, 2009

Post Checkup #1

The checkup on Wednesday seemed to help the 'ole pouch out. There's still a decent amount of pain in the afternoon and early evening, typically as I'm stuffing my piehole with the next meal (making way for more intake) or a few hours afterwards (making way for more intake.)

Early morning hours are a little touch and go with sleep, as it seems my pouch is a little nocturnal and wants to play from 10PM to 3AM. That'd be cool, if I lived in California or Hawaii... But I don't. Mornings and early afternoons resemble something that is somewhat livable and seems to be getting better by the day (if only a little at a time.)

This is going to be a long term process, but at times, between the pain and the meds, it's tough to see past the short term status. I've been fairly careful with the diet and taking note of things I eat and things that work (or don't more appropriately). Also, trying to not eat into the late evenings is difficult, as I think I would eat a fourth meal after 8 PM for the last, um, 10 years! I've been able to cut back, but even a few handfuls of pretzels seem to keep it running later in the night.

Looking forward to dairy, although fearful of the gas it may bring (boy, does that feel like a kick in the pants!) Somehow, I have a feeling I'll be eating alot more soy (which isn't bad, as I'm a huge fan of Silk for cereal!) I fondled a Clif bar today (yes, I said fondled) but was able to resist the erge... I can only imagine what that could bring on: Slow and steady... slow and steady...

Wednesday, November 18, 2009

Followup for Setback

It hadn't gotten any better since Monday, and I was having to take more pain meds at home than I did at the hospital. Last evening, they started me on Doxy (antibiotics) to hopefully avoid any abscess or infection issues. This worked the last time I had issues in the pouch (post step 1) when there was fluid in the stomach cavity. Let's hope we can be 2 for 2.

The doctors saw me this afternoon to give a look-see at what was causing the issues. They found some adhesions that were near the initial anastamosis that they think may have been causing some discomfort... And if it was, I guarantee you, them clearing those adhesions was way more painful than having them. I truly thought I was going to black out from pain and I don't think I've ever whimpered to a doctor before. [Note to self... Make sure you take the pain killers BEFORE you go in, especially if you know they're going to be poking around an already sore area.]

Hoping the next few days get better, and doesn't have to be 100%, but I'll take trending in the right direction. Waiting for Mrs. to come home with the next round of Percs so I can drift off here for a little bit. Hoping to get some more water absorption as well to help out the old kidneys: I'd like to avoid another kidney stone if possible (if at ALL possible.)

Also found today, just because you have a doctor that is much older and looks crotchety, doesn't mean he is missing his sense of humor.

Monday, November 16, 2009

Minor Setback

Well, recovery wouldn't be recovery without setbacks. The pain has continued and the bowels have been looser than earlier. Visiting nurse said blood pressure was low, probably due to slight dehydration, noted by the darker urine seen over the past 24 hours and the loose movements.

Doctors are not convinced it's pouchitis or cuffitis at this point, even after passing some blood earlier in the day. They have prescribed some Dicyclomine to be able to slow the muscle spasms and give the pouch some rest (and hopefully me too. I will say, this does remind me of my really bad UC days, where the day was focused around using the bathroom. Thankfully, I'm smarter this time around and trying to utilize a more bland diet and liquids to combat the issues of both.

The incision and abdomen are feeling great and closing nicely. I'm not doing crunches yet, but I'm definitely gaining more core strength (or shall I say, loosing core pain!)

As with rain, it can ruin a golf outing, but it does make the crops grow. Hopefully, this is part of the crop making process and not ruining my golf outing.

Sunday, November 15, 2009

No Temperature, But Still Pain

The doctors felt the spasms could be due to overwork and inflammation, so they put me on Motrin as part of my daily diet Friday night. The fever finally came down to normal late last night and seems to be holding steady. Finally, I was able to get over an hour of unadulterated sleep last night in between spasms and false alarms (or what can be deemed false alarms: they are more like disappointments.)

I was able to make my way around the block today, but not breaking any land speed records and well below my previous "healing" times. The pain does put a damper on sprinting, even if the legs and heart could handle it. Water absorption seems to be okay, but starting a regiment of watered down G2 to add a little more, just in case. [Even G2 straight up caused me to be loose when I had my temp ostomy.]

It seems that after dinner snacks of peanut butter sandwiches doesn't slow digestion like one would think. This may be another reason of lack of sleep from later in the week: Further scientific studies should show more. Late night pretzels (11 PM... what was I thinking) don't help the false alarms either. Maybe late night coffee will help clean out the leftovers and promote a good nights sleep. [Like I said: real scientific studies here.]

Friday, November 13, 2009

Temperature and Pain

Well, they call it recovery and not recovered for a reason. Over the past day, I have been looking at a low grade fever (now up to mid 100's) and serious spasms in the pouch. Docs are hoping it's only getting accustomed to using the pouch and not a bout of pouchitis.

Feeling pretty fatigued and sore (imagine working out all day... yes, that muscle). It may be small, but it's more tiring than you can imagine. Hopefully some NSAIDs and some oxy will let me sleep tonight.

Medical insurance came back with good news tonight, so that's a good start to the weekend. Bland diet is kind of boring, but hopefully just to tide me through the rough start. I guess I got spoiled on my bacon, egg, and cheese every morning. (Yes, it does do a body good. Look at mine!)

Thursday, November 12, 2009

Takedown pictures

Pictures are worth a thousand words.  These way outdo the battle scars from step 1.  The total length is about 4 inches.  There was some scar tissue left over from the ileostomy that had to be removed to ensure the closure would heal properly.  There was some adhesion from the bowels behind as well, which caused for further removal.  It is healing well and no longer bleeding profusely, but still is a joy to pack!

I removed the pictures from the blog and just linked to the Picasa album. Now there is no fear to read this! See the pictures here.

[Editted in response to comment question from "Membership Required":]
For takedown, the only action should be to remove the temporary ileostomy. This is done by cutting the stoma from the surrounding skin tissue, cutting the stoma section out of the small bowel, and then stitching the small bowel back together. Once the loop section has been removed, the bowel is tucked back into the abdomen.

As you see from the pictures, there is a single stitch in the skin. My wound was just under 4" wide and about 3/4" across. This was packed for a few weeks while it slowly healed from the inside out. It closed after about 3 weeks, but is still scabbing and healing. I'm not sure what the resulting scar will look like, but, realistically, it's not really a concern for me.

My stoma was only 3/4" in diameter, but the resulting wound was due to scar tissue from the initial surgery, as well as adhesions from the bowel just beneath the stoma. The extra was removed to get to healthy tissue to ensure the wound would heal nicely, which so far, it has.

One week after takedown

I'm out!  I was in the hospital until Tuesday and then released with smiles.  Doctors were very happy with the surgery and end result.  Other than dehydration issues upon arrival (which took a few days to clear up), it's been much better than expected.

I have control over the pouch with no accidents.  I'm still getting used to having the feeling of how full the pouch is, but that comes with time.  There is still spasms involved with the pouch as it gets accustomed to holding matter, rather than moving it through.  This is to lessen over time:  The spasms don't cause loss of control, the opposite, but they are quite painful.

I'm back to eating most foods, but still avoiding dairy and raw fruits/vegetables.  The dairy part stinks (how can you eat bacon and egg with no cheese!) but I'm preferring go slow and easy on this:  I got my whole life to get back to eating poorly.  Sugar doesn't sit well yet (dang chocolate chip cookies), so hopefully that comes with time as well.

Thank you to everyone, especially my wonderful wife, for being there throughout this ordeal.  Your thoughts and prayers are appreciated and make each day a little easier to pull through when you feel a little down in the dumps!

Wednesday, November 4, 2009

Day Before Takedown

Tomorrow's the day for takedown.  A little anxious and hopefully goes pretty smooth.  Big props to fellow poucher, Arty, for answering some post-surgical questions, mainly about the accidents.  If it goes as smooth as he says, this is gonna be a breeze.  (I'll let him know if he was wrong.)

(Just got the call, surgery is scheduled for after 2 PM tomorrow... that means I get to eat tonight!  YEAH BABY!)

Excited to be away from work for a few weeks and get to spend some time with the family.  Been crazy so long at work, I forgot how many nights I made it home before dark (even before daylight savings.)

Did NOT come close to 100 on last round of the year... fact of the matter, was one of the worst rounds yet!  Did enjoy the course (props to Hickory Valley in PA) and looking to go back next year.  Still need to videotape the stoma... last chance tonight so I'll get that camera now.

Last but not least, go Phils and go Jackets!  Chat again on the other side.

Tuesday, October 27, 2009

First Post - Catchup and Prep

This has been a long time coming, but my general laziness has delayed (as usual.)  I'm 7 months away from step 1 and only have 1 week until step 2: takedown.  Big thanks to Paul ( and several others to get me to start this, if not for others to read, to at least air out some dirty laundry (no pun intended.)

Having the ostomy has not been as bad as many make it out to be.  Other than some minor itching, the general "bulge" in your pants with gas, and the occasional murder scene in the bathroom during a change, it's been a upgrade from previous pain, cramps, and unknown "where am I gonna poop right now".   Plus, how else could I have talked myself into rocking out suspenders over a belt!

Todos for the week:
  • Have a golf round better than 110 before surgery
  • Video tape the stoma (come on, when else do you get to watch your insides at work!)
  • Make sure I get final blood drawn
  • Make sure we got the paperwork for insurance

Thursday, March 26, 2009

Step 1 - Surgery Prep

Ugh. That's all I can say. I'm not sure if it's the excitement from the surgery, or having to do the GoLytely, but my body is in full rejection mode. Typically I've done the Phosphosoda, which can be a little brutal, but only requires two drinks during the day. I got about halfway through the GoLytlely prep before I started to have a short gagging spell. This very quickly escalated to my body giving back the last drink of that blasted juice, to giving back everything it could find in my upper GI.

I had to call the surgeon to see what to do next, as even trying to continue, my mind had sorted out that it was no longer going to allow anymore into this body. So much for mind of matter. Since I had got some down and was already starting to feel the effects of it, they decided to shift towards Magnesium Citrate. It's definitely easier on the stomach, on the mind, and the bowels, but still does the trick. I still battled getting down a bottle of that, but it was enough to keep everything moving and clear out the colon.

It's going to be an early morning tomorrow with being the first surgery of the day.  Unlikely we'll see any sleep, but with the excitement from above and the lack of food, I'm pretty exhausted, so let's see how it goes.

Tips and Tricks for an easy bowel cleansing from two decades of scopes:
  • Good toilet paper: You make fine furniture using sandpaper, so leave it in the workshop. If you don't already, splurge on the good stuff.
  • A*D ointment; There is nothing worse than wiping your butt 20 times in a day. It doesn't like it and neither will you. I find using A&D before the process and after each movement, you don't get the buttburn from all the acid.
  • Baby wipes: If they are good enough for a newborn baby, then they are definitely good enough for an old cowboy or cowgirl. Remember, there is no reward for toughing this out.
  • Good reading material: Even for water, it can take a while for each emptying, and just when you think this wave is done, there's another one right behind it.  Pull a Dick Dale and ride it out: Don't leave it sit too long, it is acid after all!
  • Good clear liquids:  I always gravitated towards Gatorade.  This unfortunately ruined me drinking some of them when I wasn't prepping, as I would smell it and my body would panic that a prep was coming, so use with caution.
  • The first meal:  Prepare where you're eating afterward.  Going over 30 hours without eating would be maddening for me, so I would always have a plan where to eat on the way home from the scope.  Remember, you'll be doped up and doped out, so try to avoid thinking too hard that day:  Best to leave a plan with your driver that is easily executed.  [My favorite:  Burger King ... and it was lovely everytime!]

Friday, March 20, 2009

Final Appointment

Today was the final consultation with the surgeon before the first step. We verified the results from the bowel check and were relieved to see no signs of Crohn's. We went through the actual surgical steps again and I asked a slew of questions, some of which he would get a chuckle out of. [I found being prepared and having a list of questions ready for rapid fire allowed me to cover my concerns and avoid the "Oh, I wanted to ask..." moments.]

As I am in fairly good health, at least not dealing with any UC symptoms other than the dysplasia, the surgeons are expecting a fairly straight-forward recovery. I am strong, active, and all signs look good. This definitely helps my nervousness and mood going into the surgery. I can't say I'm terribly nervous, more anxious. What lays on the other side, I'm not sure, but this is the day I've been preparing for mentally for almost two decades: Let's hope I didn't fool myself on this one.

Okay, we need to lay out our plans on what to eat before surgery, as we know there's going to be some limits afterward. [Little did I know how long that would last!] Spicy chicken, check. Dunkin Donuts, check. Fast food, check. Okay, got all the bases covered! Considering I gave up trying to put on muscle a few months ago and just went for pure poundage, I've successfully added a few pounds to make it through any "lean" periods. [I would later find it's easier to lose than it is to gain with this surgery.]

The preparation for the surgery is the same for a colonoscopy: Drink, starve, and poop for an entire day before. GoLytely, Phosphosoda: I won't miss you for a single minute. Thankfully, this is where our paths separate. I'm not saying it's worth having your colon removed to not have to do a yearly scope and prep, but if you're having it removed anyway, it's surely a plus! Got my gatorade and my baby wipes: Bring it on!

Tuesday, March 10, 2009

Upper Bowel - Crohn's Check

My wife and I decided on the second surgeon for a number of reasons. We felt he was more comfortable with questions and upfront with information. His practice has been specializing in colo-rectal surgery, especially JPouches for a years, especially laparospic. The time delay was a strike against, but everyone noted it was like that and you just worked around it or checked on time delays before coming. I'll be honest: I'd rather have to wait for a doctor that takes his time with his patients rather than ripping through them like a 6th grade quiz papers.

We let him know with our decision and he ordered a followup procedure to verify that I didn't have Crohn's. I hadn't had an upper bowel barium before, so off I went to have the procedure. The hospital is about 45 to 100 minutes away depending on traffic: Right, it's usually closer to 100 than 45, unless it's 5 AM.

This was my first time drinking barium, which I didn't find all that bad. It was similar to drinking toothpaste. I don't do this with any regularity, but at least it wasn't like dirt or slime: That would have been a little more difficult. [This would prove beneficial, as I get to have more in the future.] After slamming down some cups, then slowly drinking while the shots were taking, the radiologist noted I had a fast digestive process: Maybe this is why Wendy's never stayed around that long?

Tuesday, February 24, 2009

Surgeon Consult - #2

Today, we met with our second surgeon. He was recommended by a friend and was noted as one of the best at laparoscopic surgery. We ended up having to wait an extremely long time in the waiting room, almost to the point of walking out. We finally got in and first consulted with his head fellow, which made us a little shaky. We finally met the surgeon, who was very on point and had an odd sense of humor, which obviously put me at ease.

We discussed the options, and talked about the procedure. He also did a suprise flex sigmoidoscopy (which I didn't prepare for) so he could check out how the rectum looked. After a little cleanup, we gathered again and he gave us his final thoughts, which was that I'd be a good candidate for the JPouch. I was obviously healthier than many persons he sees and felt with my condition and general health, I should tolerate the surgery quite well. [In retrospect, we were both horribly wrong on this account.]

He was very open with questions and even chuckled at some of my few direct ones. Maybe he doesn't get people with my attitude all the time and maybe he looked at it like a challenge... Who doesn't like one every now and again. He is typically booked 6 weeks out for surgery, so we picked a date, just to reserve, should we want to use him. The staff was nice as well. All said and done, it was a three hour appointment.

Wednesday, February 11, 2009

Surgeon Consult - #1

Prior to today's consultation, my wife and I made a checklist of items we wanted to ask the surgeons. I'll be honest: I tried to find questions that were straight up direct. If you don't have a problem answering the hard questions, then you get to cut me up. Ideally, we were trying to find a surgeon that did the surgery at least partially laparoscopically, as I wasn't looking to have a zipper up my front side like the old-school surgeries (or emergency surgeries). I'm not so concerned about the scars (they always have interesting stories), but the recovery is supposedly less.

We met our first surgeon, fairly young, but quite congenial and seemed to have a good bedside manor. We liked the facilities, but was concerned that the surgeon did a hand-assisted pouch stitching. Not that it's inferior (some people think it's the best), but again, I didn't want a large zipper opening. He hadn't done many of these procedures, but it was his specialty, so that was comforting.

Based on my results, age, length of disease, etc., he felt that the jpouch was the best solution and I would be a good candidate based on my health and sphincter control. [I never thought I would ever be proud of "sphincter control", but I'll add that list of my "things I got going for me."] His nurse practitioner was wonderful to deal with and was a real joy to work with.

My wife and I left the office and traveled back home, thinking, okay, he seemed to be okay, but we couldn't sell ourselves on it. We had two others so we left our options open until we conducted the other consultations.

Friday, January 30, 2009

The World Wide Web

Thankfully, I'm comfortable with the inter-web and found dozens of sources, articles, and even videos of JPouch surgeries, as well as just plain colectomies. Cleveland Clinic, Mayo, and other well known hospitals have been researching UC, Chrohn's, and different pouches and results for decades now. Thankfully, these are easy to come by, and, if you can handle some big words (and albeit, some boring filler), there is a lot of information to be had.

I also stumbled upon the forums, where it seems like coffee time all day long, and chances are, somebody has already had it and already had it fixed. It's been a wonderful source of information for use both before, during, and after surgery. This was an instant favorite bookmark, and became a daily regular visit.

After nights of research and reading, this seemed liked the right surgery to do, now it was just trying to find the right surgeon (and hospital) to do it. As we didn't want to have to travel to one of the major centers (ClevClin, Mayo, or NYC), we tried to find specialists within our region: I've seen what difficult hospital stays can do to families and I wasn't ready for that nor did I want to put my family through it.

Thankfully, my GI had offered some names he knew from his earlier years and other specialists that were near us. A good friend, who actually sells colorectal tools, got some names for me as well for other surgeons. We did some research, checked out the net, but had trouble finding any information on these surgeons. Well, let's go instincts and let's see how it goes. I like to interview candidates for work, guess this isn't much different, except now I should REALLY care who we hire.

Thursday, January 22, 2009

The Phone Call

My GI called in late January to question why I had not setup a followup appointment after my scope in the prior month. As I'm usually doped up after the procedure, I don't remember him requesting, as this was not our usual relationship. When I apologized and asked when he would like to see me, his receptionist said "How about tomorrow?" Immediately, I knew it was going to be "that" appointment that I've been preparing myself for over the past two decades. "Should I bring my wife?" She hesitated and said "You should do what you think you need to do." All righty then, that does it.

We headed right into his office and, as I pointed out before, he prepared for giving me more bad news. They had the biopsies evaluated (and re-evaluated by a secondary, much more notable office) and both concluded there was low-grade dysplasia. The good news that it was low-grade and not cancer. The bad news, the likelihood of this eventually TURNING into cancer was 100%: The combination of almost two decades of UC and the PSC, it was a guarantee that cancer would appear. Now, statistically speeaking, it was 100% based on prior cases, but I could be that first case that doesn't get cancer. Well, I'm not that big of a gambler and I'll play the lottery instead.

As he's explaining the situation and what options we had (suggesting the JPouch based on my history), my son is sitting on my wife's lap, who is bawling her eyes out. In order to not have my son terrified of doctors (because he sees them A LOT), I continued to keep a happy face and a forced smile. At a certain point, I think the doctor was a little freaked out by that and that I wasn't really grasping the situation, but A) I wanted to make sure my son was comfortable and B) I knew this was going to happen sooner or later. I've done my crying, my denying, my anger, my depression years before. This is the day I always knew was going to come and was just waiting for. This sounds sort of grim, but I've always lived life that it wasn't free and nothing was guaranteed. As I had said prior, I never thought I'd live to be 35: This was just a few weeks short of my 36 birthday. Coincidence or did I make this happen?

My wife and I readjusted some of our priorities and started getting on the horn with some surgeons in the area and finding out what this whole "JPouch" was all about.  (I have to admit, the fact that it's called "Jay" had a certain ring to it as well.)