A Year Gone By

One year ago today, I was having an IR drain removed, being readmitted to the hospital, ultimately removing my jpouch, and receiving a permanent ileostomy.  The nervousness about the situation, it's direness, and pain that went with it was truly the most trying time in my life.  I typically don't honor anniversaries with nary a nod, as I feel each day is it's own celebration, but somehow, this feels slightly different.  The severity of how sick I was, the time pulling through ICU, and the long recovery even after returning home has kept my mind quite busy over the past few weeks.


Life has returned to normal - at least what we consider normal, and we spend more time looking forward than looking backwards or looking into just the next day or the next week.  I have little regret about the decision to moving to a permanent ileostomy and have been able to do all the things I had done before - including being less tied to a bathroom.  Bike riding, working out, even rock climbing - and other than making sure I've emptied my bag, there is no urgency and "Uh oh", and more focus on the tasks at hand.

I thank all the family and friends that helped me through the past two years, and most importantly, my wife who has been with me through the thick of it all.  As much as I love to write, I find it unnecessary to send updates as frequently as I had (as can be easily seen from the past few months) and usually don't have much to say except that things continue to be well.  I hope that this finds those that are suffering through their own personal trials on a road to recovery or a bit of peace.

A New Year

This is the time of year when people seem to make some promise to themselves or others to somehow turnover a new leaf, do the things they didn't do the year before, or get on (or off) a given "wagon".  I've often wondered how this simple switch of a digit generates some sort of magic to make things so different.  Being close to the finance and retail industries, I see how this can affect bottom lines, possibly compensation, but nothing more than dollar signs, and not necessarily for those waiting for that "magic".

At the end of the day, the magic isn't date related, somehow driven by a crystal ball falling on top of a building, or thousands of drunkards gathered in the freezing cold.  It is driven by our own desire, the need for something different masked by the hope that we can be driven by something greater than our own will.  We hope the new year will somehow wash away days, weeks, months of excuses from the prior year and we will be revitalized with new vigor to put them all at bay.

We do not need to wait for that mythical moment to make a change, to make a difference, to change our outlook.  We have the power every day to make it happen, to leave those excuses behind.  If it's good enough to have as a resolution on January 1st, it's good enough to have on June 12th.  Take advantage of the time you have and make the most of each day - you only get so many of them.  Don't dwell on the things you don't/won't do, it only saps your energy.

Clear your mind of those things gone by
You can't change the past, why even try
You can build upon all you've learned
You can start today.
- Lifeson

Double Check Your Clip

Well, after mentioning just yesterday I only had a few leaks, I had my best leak yet.  After using the restroom at lunch in a restaurant yesterday, I must have, at some point, forgot to check my clip was closed.  It didn't become obvious at first, until I stood up about 20 minutes later (after some great Mexican), and felt a warmth in a spot I shouldn't.  As I made a break to the restroom, I felt my clip somewhere mid thigh: I knew at that point, that was all she wrote.  Sure enough, it was open, completely, and ran down my leg.

Thankfully, denim is a little more resistant than I thought, and after some cleanup (thank God for a fully stocked bathroom), it still looked like I had at least wet myself down to my knee.  My jacket wasn't long enough to cover up the whole thing, so I was pretty much reserved that here we go!  We were completed with dinner and leaving anyways, so I walked through the joint, coat in hand and just went with the flow.  All we could do was laugh on the way out and chuckle at how the mall "was gonna be a little delayed" and "did it just warmer in here?"  A load of laundry and a quick shower and the episode was behind us.

Other than a few obvious stares, it's really nothing to deal other than your own embarrassment.  Don't let it eat at you:  Normalcy is a state of mind - Have your own state.  Be comfortable in your skin and learn from that moment.  Bet I'll remember to double check my clip from now on and I'll always have an entertaining story to tell (and retell!)

Home for the Holidays

I've been away from making updates over the past few months, even when it wasn't going all that hot.  Save the three random episodes of "blockages", hospitalizations, and NG tubes back in late August and September, things have been well.  I've been putting on weight, golfed several times, and work too many damn hours.

It was a long haul after the surgery in May, especially getting strength back.  Having the ostomy is not that invasive to my well-being or things I want to do.  Pants are tough to find to fit, especially when you have no butt to fill them, but if that's all I have to worry about, I'll take it.  Two leaks back in August and one last week, but all near home and typically after eating bananas and rice (go figure).  Once you get into a routine, you just do it and don't really think about it.  It doesn't really affect my mental state and it's much like showering: You don't really think about it.  (And if it's all over the place, you laugh it up, clean it up and wash your hands!)

There has been some minor erosion around the stoma and it doesn't protrude as much as I would like, thus the more frequent changings.  It's unlikely I'll have it addressed anytime soon, if ever, if it continues to be minor.  I can live a lifetime like this, so let's hope it continues that way.  That, and my surgeon is tired of seeing me: Our twelve weeks apart will be the longest ever and I'm sure we won't be missing each other when we do convene again.

I may go back and fill in some of the prior months dealings, especially with the admissions to the hospital.  Otherwise, this little journey may stay in our rearview mirror.  I still receive updates, so feel free to contact me with any questions or updates or what's new in comments or email.

Happy holidays to all of you and your families.  These are the times we live for - enjoy them, for they are far too infrequent and fleeting.

- J

Back to Work (and Golf)

Just had another followup with my surgeon to look at the progress of the irrigation wound.  Last evening, (and today) we were unable to get any packing in the wound and my wife was unable to get even the stick end of an applicator in as well.  The doc is happy with its healing and noted it won't need packing and only dressed if it leaks.  He noted there was extra skin build up around the anus, but isn't an issue, unless it becomes bothersome.  If it does, then we would look to actually have surgery to remove that extra skin:  I haven't been on a bicycle or tried running yet, so those are the two likely aggrevators.  He noted he wouldn't do surgery until at least next year, so let's hope it isn't bothersome.

I don't have another followup for another six weeks, which I think is the longest we'll go without seeing each other since our initial consultation 16 months ago.  I've got the thumbs up to go back to work and for any activity, including golf and swimming:  Considering those are the two activities I'm looking forward to most, that's a huge plus.

I'm still fighting with a fungal and bacteria skin infection for the last few weeks.  It doesn't seem to have affected the wounds, just extremely irritating with the itching.  After a nice course of oral antifungals, I'm back to taking a short course of antibiotics to help with the MRSA.  Other than a nasty sunburn as a result, everything seems to be on it's way out.

I don't expect to have much to report over the next few weeks, as I don't have many doctors appointments (at least none that are GI related.)  It seems as my health is getting better, I have less and less to report.  While this is definitely a step in the right direction, it's amazing how this writing has been a help, both morally and spiritually.  It will be something that I will miss.  Let us hope the next few weeks are uneventful and we'll see each other again in August.

Slow and Right

I had a followup appointment with my surgeon last Friday to check the progress of the wounds and their healing.  The irrigation wound has closed to the point it approximately 2 inches deep.  It's width has also decreased, as we can only fit 1/4" packing into the wound.  This has unfortunately increased the drainage, as the packing doesn't have the same absorbing power (I'm going to guess 25%.)  The anus is having issues closing, so the surgeon was kind enough to put some sodium nitrate on the one side to remove some of the excess skin:  Take note, this was quite possibly some of the worst pain I've ever experienced.  It was like sitting in a bowl of acid for two days (kinda reminded me of the bile days with the ole J-pouch!)

They were happy with the progression, but noted that the healing of these two wounds doesn't always go as planned due to A) the depth and B) the area it's located.  As a result, there's a possibility that I'll need to have surgery to close these wounds.  Technically, I think they "could" do in the office, but I'm pretty sure they want me knocked out due to the pain it causes.  (Yes, it's tender down there.)  We'll know more when I have my next followup on the 20th.

I have only a few more days left of the steroids (down to 2.5mg/day) and then we'll be drug free.  Coming off the steroids has been sort of crappy, as my entire body hurts and I'm exhausted all the time.  I'm hoping this goes away over the next few weeks as my body remembers how to make it's own.  I've been off the pain meds for almost 2 weeks, except for after the sodium nitrate burns from last week.  The pain is manageable, when necessary, by Advil or Motrin.

We visited with my ostomy nurse (Ostomom) on the same day to have her checkout the stoma.  She was happy with how it looked and noted it wasn't as bad as I thought.  Regardless, she noted that the surgeons wouldn't do a revision for at least another 4 months until this one healed and I was back to strength.  I guess we'll see how this stoma works out.

I've been in contact with both Hollister and Convatec (two ostomy suppliers) to get samples and see which works well.  Convatec has created new "slim" versions of their Eakins seals, which seem to work quite well for the flatness of my stoma.  I do like the versions of their Durahesive wafers which are modable, making the application a little easier.  Both ostomy nurses from those companies were fantastic in offering suggestions for their supplies and sending out samples over night!  I personally like the Hollister bags better, but the wafers are more important.  I may give another call to see if I can get smaller wafers to see how they hold.

Sitting has become a welcome treat, but I can only do for about an hour, typically while eating, before it becomes too much.  I can lie on my back for much longer periods of time, which makes for easier sleep and rest.  The World Cup and Tour de France couldn't have come at a better time:  There's not much to watch after midnight, but these re-runs sure keep me entertained until I pass out.  Until next week, enjoy the Cup run!

Magic Tricks and Erosion

For the most part, things have been progressing well, ableit slowly.  The infection wound is a blast to pack (note sarcasm here.):  The pain is quite intense and different than most pain I've felt when my wife or nurse is packing gauze in my left buttocks.  Removing the gauze is not nearly as intense, but still hurts the same.  The only saving grace is I get to entertain myself by chuckling "Nothing up my sleeve" while I magically make a foot of one inch cloth appear from my behind.  Thankfully, the pain typically goes away after about 1/2 hour and is then just uncomfortable.  This isn't true on all days, but most.

I've been thankful to be able to sit for dinner the past few days, if only 15 minutes on my special cushion.  Unfortunately, that typically induces a decent amount of pain afterwards and some drainage, so I avoid doing it for other meals or times during the day.  Without the drain, though, I can at least lay on my back, which has helped with sleep somewhat.  That has been a real challenge over the last few days and drives me to multiple naps during the day (and some morning grumpiness.)  Having my son around to pick things off the floor and run little errands for dad has been helpful too:  He's always excited to help and I'm always willing to oblige.

One thing that doesn't look like it's progressing well is my stoma:  It has shrunk, which is good, but has become flush on the left and bottom.  As a result, normal appliances won't fit.  I unfortunately waited a few days too long to change it last time and I've started to get some skin erosion around those areas.  This is quite painful and can lead to some nasty situations and a vicious cycle of open wounds around fecal matter:  Yes, it's as good as it sounds.  I've been in contact with multiple ostomy nurses from the major appliance manufacturers who have been fantastic with their assistance and sending out samples to try out.  If you have a need for assistance or want to try a different brand, I recommend calling:  They are very helpful and also call to check up on how your are progressing.

I'll have to keep an eye on this:  If this continues to worsen, there's a good chance I'll have to have it surgically revised to get it to protrude more.  It may not be necessary if I can manage with appliances, but if not, then surgery will be next option.  I would prefer it to be protruded, as it makes it easier to manage and change appliances.  Sometimes too long is bad too, so it's a juggling act of weighing what you have against what you're gonna get.  Also, I don't want to continue to throw more pieces of my bowel out the window unless really necessary:  Sooner or later, you run out of tube, and that is the least ideal situation.