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.