(just pulling in content from my old, experimental blog)
2015-04 April
2015-04-16 Thursday
Some Advantages #ostomy
So I have returned to work. I have an office job. We share a for with other companies. The shared bathrooms are often a nightmare (really dirty) especially after the call center there hours a new crop of people every so often.
In the past I would have to monitor the hall to try to get into the bathroom right after the custodian passed through. If I had to go and all the stalls were in use or out of commission I would panic.
Now I don't have to worry about this. Bathroom is filthy? No problem. I can take care of things without sitting on the filthy toilet. Bathrooms are full? No problem, I have lots of time to take care of things now.
All in ask this has made working in an office much easier and has taken away some of my desire to work from home again.
2015-04-09 Thursday
Had My Checkup With The Surgeon #ostomy
So after about 6 weeks you will go in and see the surgeon that performed your surgery and they will assess everything. I was told that at this point my scar tissue was as strong as it was going to get and so I could start to resume a normal life (bearing in mind the usual hernia precautions). I didn't have any infection while recovering so my body repaired itself well and I am generally top notch.
One thing that didn't happen is that I was expecting the surgeon to have my biopsy results - he did not. When they removed my colon they sent it away to a lab to check for evidence of Cancer. The results of this test have still not come back. Everyone is pretty sure there will be no indication of Cancer but it is the kind of think I want to be sure about. He set up an appointment in three weeks at which point he expects to have the results.
- Another reason I need to go back in three weeks is my rectal surgical wound has still not healed. I am still receiving daily visits from the home care nurses and while everything is going well it takes a long time to heal.
I wrote a bit about this previously but now that things are further along I have more to report. As the wound heals you get more and more sensation in the area. This is good as it means the nerves are coming back to life but it also means more discomfort from the packing. I would not call this pain but it is annoying. Like a constant wedgie. For weeks.
So my current issue is that while the packing is really not bugging me much during the day it is really driving me nuts while trying to sleep. So much so that I am bordering on insomnia. I think I figured it out, though. Every night we put our son to bed and relax in the living room either on the Internet, chatting, or just watching some tv. This protracted sitting (e.g. for an hour so) is the longest I sit all day. Meanwhile, I usually sit up in bed to read. So all this sitting is putting pressure on the wound. Maybe it is swelling up or getting irritated. I shared this with the home care nurse and she told me that I could be right and advised that when sitting, don't put weight directly on your rear end. Instead try to prop on cheek up on a rolled towel or maybe a firm pillow. This should take enough pressure off. Trying that now. Wish me luck!
- New-since-the-ostomy foods lately (not all at once): pickels (on a burger), peppers with the skin on (pizza topping), fresh basil, chard (well cooked), and a slice or so of tomato on a sandwhich today. All good so far!
2015-04-02 Thursday
A Little Over A Month #ostomy
It has been over a month since my permanent ileostomy. I have just changed my bag and am now using an opaque bag. This feels a little more sustainable to me. I don't care of people know I have a bag but see no reason to subject them to a visual of the contents for no reason.
I have cushion the bag pretty much worked out now but today I learned that I should probably fast between dinner and the morning bag change since output started flowing between crusting and cutting my bag out… This was inconvenient but just made the process take longer.
A new thing I tried was using cotton balls to spread the powder for shaving and crusting. This worked really well and I'll keep doing it for sure!
2015-03 March
2015-03-27 Friday
Media (lately) #blog
Just a quick listing of the stuff I have been watching and reading lately:
- The Last Man On Earth - funny show about the last man on earth who has to cope with a couple of people showing up. Hell really is other people on this show. I find it entertaining but at its heart the show just highlights stereotypes and draws a lot of humour out of the extremes of the situation. Well worth watching, I guess. There are many "last man on Earth" movies and I find them all interesting - usually there are zombies.
- The Three Musketeers - After reading the book the Ninth Gate (movie) was based on (called The Club Dumas) I decided to check out this classic. It really is an entertaining read if you like the writing style and I am enjoying it a few pages at a time before sleeping. Beats watching TV.
- Togetherness - another comedy show but it takes a serious turn. Starts out very light hearted, then becomes a romantic comedy, then turns serious. Excellent writing and every moment is gripping and/or hilarious. Two thumbs up.
2015-03-26 Thursday
Rectal Dressing #ostomy
I'd like to talk about rectal dressings since I am not seeing this discussed anywhere (haven't looked too hard) and feel like it is a topic new ostomates need to know about. I have no idea how this goes for everyone else but I have a permanent ileostomy and so my butt no longer needs to be functional (and as I understand it this is also necessary medically and removes risk of Cancer).
Anyway, the dressings start in the hospital. At some point they will begin changing the dressing on your butt twice a day. This can be painful as they use a massive absorbent pad over the dressing and lots of take holds it on. Eventually ask the hair gets tired of and this gets easier. Work with your nurses to time your pain meds for about 45 minutes before the dressing change so you are in less pain. You have no choice but to sit/lay on your butt but don't sit on the dressing for more than a few minutes until cleared by the nurses (sitting in bed propped up is OK).
So eventually you get to go home. Once home the dressings are done once a day by home care nurses that come to your house once a day and change the dressing. Eventually the dressing gets smaller (they are packing the wound so it heals from the inside out and this packing decreases as does drainage over time). The downside of all this healing is the nerves return to life and things get sore. You should be able to control this with Tylenol.
Anyway, this goes on for over a month and I am half way along. Stayed tuned for how this story ends! :)
2015-03-22 Sunday
Leak #ostomy
So I had my first ostomy bag leak today. I was trying out a maternity belly band to keep it in place and when I checked it after a couple of minutes I noticed a very small stain on the otherwise white band. It turns out there was a small pin prick sized hole in the bag. Not sure what caused it.
The next thing you know I am changing my bag for the first time without some kind of supervision and it went well. I am learning to do each step efficiently. I am still concerned about how I would do that when not at home. You really need to use lots of items and they ask need to be at hand. You particularly need a supply of wet paper towel. That is actually the hardest thing to imagine having when it so I'll do side research on what other people use. Where there is a will there's is a way.
2015-03-19 Thursday
Snowpocalypse
Where I live we have just had a couple of massive snow storms resulting in the most snow down in recent memory. My wife has had to do the snow removal because of my operation. Or neighbor continues to help by snow blowing our driveway and my brother and his son have lent a hand too. But really, it has been my wife out there digging away that has made it possible to get our son in the car etc. Yes the snow banks are literally over the cars and making it hard to get in and out of the vehicle.
Anyway, we could use a break and some snow melting.
In Ostomy News things are moving along as expected. But dressing is driving me crazy and I've had a couple tired days but am otherwise good.
2015-03-16 Monday
Staples Out #ostomy
The long march to recovery continues. My staples are out of my abdomenand so far things feel good. I am looking forward to a better night's sleep tonight! In other news I am not really sleepy yet today despite chores and going to a doctor's appointment. That feels like improvement to me. Next big milestone will be driving in about two weeks and then I should be able to shower again too (right before the home care nurse arrives).
2015-03-14 Saturday
finally had a good night's sleep #ostomy
Last night I switched over to using my sleeping bag instead of heavy bed covers. This kept me very cosy without any weight being put on my staples and other areas that are feeling odd after the operation. This finally let me get the night's sleep I was craving, unbroken by late night crappy action movie watching (I have seen 1/3 of Die Hard 2, Sahara, and a Stephen Segal movie where he fights Big Oil).
So I keeping getting asked about how things are different now. Here is a list of random things I feel have changed:
- pooping - I no longer spend every waking moment wondering if I should crap before I do something or longing until I can crap next. I do need to empty my illestomy bad frequently but I am told this will ease up in time and so far it hasn't been that inconvenient.
- neck and back pain - basically gone although I am really tired and can feel some soreness as a I type this (first time at a computer in two weeks). Could be the chair (nothing is set up right for me at this desk). This means extended comfort, deeper sleeps, more brain cycles to enjoy life, and generally more optimism. My posture is still terrible but I hope to correct it with time.
- eating - I am following doctor's orders and eating a low residue diet. This is a little boring but I am a creative cook and so is my wife. I have never had problems with blockages in the past and don't anticipate problems as long as I chew my food very well and introduce new things slowly and carefully.
- other people - I don't care who knows I have a bag. If you spend time with me it will eventually come up. If you don't then you are welcome to know what you would like to know for your own reasons. :)
That about sums it up. I am trying to accept this, acknowledge it probably is saving my life (re: likely colon cancer averted), and there's been some postive outcomes re: other areas of my life.
2015-03-12 Thursday
google code
Looks like Google Code is shutting down. Decisions like this are always unpopular but I think this makes sense for Google after reading thier statement (haven't verified it). They were providing a free service and now they will not be doing so (with plenty of notice). I am ok with this. This type of thing is why I prefer to use a VPS for hosting with whatever things I am working on backed up elsewhere (e.g. using bitbucket and say one other service).
test reorder
Just testing some blog code.
This gets my posts sorted in the datetree org mode file so HTML export puts the latest first:
(defun sm-publish-blog () "publish blog.org files as html files, publish notes.org as ics" (interactive) (switch-to-buffer (find-file-noselect "~/org/blog.org")) (goto-char (point-min)) (search-forward-regexp "\*\* [0-9][0-9][0-9][0-9]-[0-9][0-9]") (org-sort-entries nil ?A) (save-buffer) (org-html-export-to-html nil) (copy-file "~/org/blog.html" "~/www/blog.html" t) (org-icalendar-export-agenda-files) (copy-file "~/org/notes.ics" "~/www/XXXXXXXXX.ics" t))
2015-03-11 Wednesday
Adjusting to home #ostomy
This was my first full day home since the operation. I had a visit from the home care nurse, etc.
I am still not really sleeping normally at this point as my schedule was so screwed up from the hospital. 11 nights of being woken constantly in a four person ward really has left me a little disoriented. I am generally fine except overnight but I expect that will clear up over time.
Other than measuring the output I am not finding the whole ostomy bag thing that annoying. Every meal is a test of my ability to chew slowly and completely since I never used to care but I am getting used to that. Speaking of eating, I am down 15 lbs since the operation. I am not sure how much of that is from the tissue removal and how much is the terrible hospital food and subsequent small meals but I'll take it. :)
2015-03-08 Sunday
last night in hospital? #ostomy
It is possible this is my last night in hospital. I hope to be home tomorrow if my white blood cell count continues to go down. My wife brought me good today and I ate. This completely changed me over to feeling healthy and stronger.
The food here is atrocious. that is really my only complaint. I can't imagine someone making it for themselves to eat.
I am generally tired of being here, miss home and my loved ones, and really hope tomorrow is the day.
2015-03-03 Tuesday
post-op sit rep #ostomy
I went in for my operation on Friday and it is now Tuesday. I am doing really well. The Ostomy bag is actually very easy to empty and the nurse is teaching me to change it.
Pain is really under control so far with 2mg of Dilaudid every four hours and then Tylenol every couple of hours.
After a few days of fluids and some soup and oatmeal I am starting solids today. can't wait. I am sick of ice water all day so my wife (guardian angel) will bring me sports drinks today.
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