Donnerstag, 31. Dezember 2015

New Years Resolutions

I would like to resolve that this will not become an ostomate blog, just as I would like to resolve that my life will not be ruled by the fact that I will soon have a bit of intestine on the outside of my abdomen and that that will be a permanent change.
With that mind, I also want to stay more present  - more present than a woman abroad on holiday who continues to think about an operation and the life that will follow that isn't for another month and is nearly 1,000 km away - while also reminding myself that "this too shall pass" when dealing with something unpleasant.
This is my last trip abroad without an ostomy. I know that my Public toilet Eurokey does not work on Hungarian public toilets, that the "public" toilets (and public use of toilets in restaurants) cost 180-200 forint, but that you don't have to bring in your own toilet paper, as you do in more eastern countries. You can also throw the paper in the toilet. I have also not seen a squat toilet. I know the facts about public access to toilets in so many major capital cities in the US and Europe. (And have cards written in French, German and English stating that I have a non-contagious disease and require access to a businesses staff-only toilet, if need be. Thank you SMCCV - Schweizerische Morbus Crohn / Colitis ulcerosa Vereinigung.)
This is the last time that I will have to schedule lovely days on holidays with my faulty guts in mind and I am a little thrilled about that. I might be able to go to India! I mean, I can go on a hiking holiday and go places with outhouses and not need to ring hotels in advance to see if they have a handheld shower and if they don't to pack my own irrigation bottle!
My doctor has told me that I cannot fully know what living with a diseased, thickened gut is doing to my daily health until I have had it taken out. He thinks that I might feel well on a whole new level, beyond my imagination.
At the same time, I think that some of the stuff I deal with has become so commonplace, that I can't imagine how my external life may change post-op. I remember the time that Ivo came to my gastroenterologist with me and the doctor asked how many bowel movements per day I'd been having and Ivo was shocked when I said "not many - 8-10 per day." 8-10 per day has been a goal since I was 15 years old. When I went for my last scope, my doctor how I'd been feeling. "Great! I only have fistula pain 3-4 times per week!" He rolled his eyes and said that he's looking forward to seeing my surgical success. I have been planning my life around a toilet for 20 years and I just take certain aspects of it for granted.
I still remember the first time I visited Ivo in Providence after I'd moved to Philadelphia and he'd bought a value pack of "softy-soft" toilet paper. When I told my friend Dacia about that she'd said "It's true love!"Oh the trees that will live on once my rectum is removed!
Of course I am glossing over the hassle that awaits in needing a plastic bag and adhesive flange on my hip for the removal of waste. But that stuff is truly unknowable until I've been cut and sewn and swelling has reduced. So I'll leave that for then (look at me following my resolution!).
I'm just looking forward to a new freedom and a different inconvenience.

Donnerstag, 24. Dezember 2015


I had loads of ideas of what this year would be like and 2015 went and knocked me for a loop.

As the new year approaches and as gift giving is upon us, I feel compelled to recognize that this year was enough; that that'll do.

Mittwoch, 23. Dezember 2015

Holiday help

Braving the shops before Christmas day requires that I bring along some extra patience.
I was hired as holiday help at Gap Baby / Gap Kids at Garden City Shopping Center when I was at school one year. It was described as mostly folding and stocking and putting things from the change room away again. But wouldn't you know, I distracted a few kids while their families were shopping and that became my responsibility for the season. I was so pleased, and my bosses thought that the parents whose children were in hand could buy more and spend more money.
A year or two later, I was off the Gap was pleased to avoid shopping centers for my holiday shopping. But then my best friend and room-mate thought that it'd be a lark to go to the Providence Place mall on Christmas Eve. I didn't really have any gifts left to buy, so the pressure was off and I could just ogle the chaos without anything at stake. On the way out we were stuck in the parking structure for 30 hours. We were in a borrowed Volvo that had no in car stereo and so had a boom box in the back seat. We blasted Christmas music and sang ourselves horse and just had the best time.
Today I was off for some final gift purchases and left enough time to be patient and courteous. But my patience might have been to a fault. At the craft shop, once I'd asked a shop assistant for something, she'd walked away mid-sentence, which seemed to begin with "I'll have a look in the -"
I waited 10 minutes before I finally plucked up the nerve to ask another assistant what my next step should be.
But nevertheless, I got done what I needed to do and had pleasant and friendly interaction with shoppers and shop workers alike and I'm so darned grateful for it. The odd child having a tanty will always evoke my mother's words about how unbearable children can be around the holidays at times. But there's nothing that makes one doubt the joy of the season like unfriendly interactions in the run up to the holidays.
Zürich has "Sonntags Verkauf" (Sunday shopping) through advent. It feels strange to me that the ban on shops being open on Sundays is all about employees getting to spend time with their families and one might argue that this time of year is all about spending time with family.
Nevertheless, I've already gotten to give some sweet kids some gifts and look forward to celebrating with some others tomorrow and hope that my family are having an equally easy time of it.

Freitag, 18. Dezember 2015

New Year's resolutions

Last night, I had the song "Long December" from the counting crows in my head.
Like clockwork, that song pops into my head. But of course it does. "A long December and there's reason to believe Maybe this year will be better than the last." It's like night swimming when the seasons change to autumn. There's the nostalgia of when the song came out and the mood and the words.
But today, Miranda Hart's soliloquy in the episode The New Me (guilty pleasure)
"Today I've begun the new me. I'm going to be the kind of woman who, you know, just leaps out of bed and just does that (shakes head) and their hair looks perfect.
They then grab a muffin from their Cath Kidston polka dot biscuit tin and head to work wearing trainers at the bottom of a skirt suit to show off they've power-walked in.
They have potted plants that don't die on them. Their fruit bowl isn't full of three-week-old rotting pears because they actually eat fruit. They have day bags, an evening bag and a clutch. For lunch, they just grab a wheat-germ smoothie in between work because that's enough to keep them going, even though at lunch time they jogged and enjoyed it because they don't have flesh that moves independently to their main frame.
And finally, they have easy access to pens to finish a crossword at a car where the man they decided to take as a lover the night before says to them "Hey, last night was great!"
You know, I'll be that kind of woman."
I forget what my resolution was last year - likely something about not becoming crazed about baby making.
This year's goal is to sanely and safely take care of myself. And to make more muffins.

Dienstag, 8. Dezember 2015


sample ostomy
Turn and face the strange.“ One of my first proper dates with my husband was a Bowie concert in Boston. This handsome, kind man had great taste and good ideas. I was smitten.
Since my husband and tried on my sample ostomy bag, I’ve had the following quote in my head:

"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in your joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand. But once you are Real you can't become unreal again. It lasts for always." –Margery Williams, The Velveteen rabbit

My husband used to get upset when I would talk about how much I look forward to being old together. I romanticize our senior years and the changes that will happen and how we’ll love the people we evolve into. He wants to stay present, which is sound and healthy. But I wonder if I’m not looking forward to his body betraying him as he ages. That’s a horrible thought, but I think it may be my subconscious’ wish for an equalizing. A healthy person degrades slowly; over time. But being the spouse of someone with a chronic illness can be like being in a relationship with someone who is dealing with things that older people deal with – but all at once – the body not doing what you want it to.

The Velveteen Rabbit quote was thundering in my head when my husband looked ashen in the surgeon’s office yesterday, and he grasped my hand more tightly. And when we were home and he said “damn! Soon I won’t be able to make ‘your mama’ jokes or ‘in your butt’ jokes!” (My mother died two years ago and my husband and I – for some reason – when asked “Have you seen my ______________ (phone/keys/book…)” answer “in your butt.” It’s stupid and childish and always makes me giggle. But my husband’s jokey revelation was a balm. He was joking about some heavy news and that gave me comfort. I don’t think that I can be ugly to him; not with an ostomy; not with my rectum removed and my anus sewn shut…

surgeons always say "I'm no artist"
This non-artist made a rectal removal look very innocuous. 
My surgeon said that laughter is essential post-op for pain management and healthy lungs. I believe that my post op health is in good hands, so long as my best friend and spouse is there to help me find the funny.