punctuated

As I sat on the 3rd floor of a four story tattoo parlour in Zürich, the tattoo artist chuckled while scrolling through google images, called up with the term "Doppelpunkt." I'd just told him that I wanted a "Doppelpunkttattoowierung" because in English, that punctuation mark shares it's name with an organ that I've been missing for nearly 20 years. And there on the screen was a drawing of a colon (or Dickdarm.)
There is already a post on this blog about the regret I have for the tattoo on my back, which I got in 1999. I still very much love the tattoo on my shoulder, which I got in 2010. I learned from the first that I should have and like the idea of a tattoo for a good long while before putting ink to skin. I first got the notion of this tattoo nearly a year ago and it made me chuckle. Then I started seriously thinking about it in earnest in the spring. I would have waited the full year of considering it, but I've got a rather largish surgery coming up early next year. When I mentioned the tattoo idea to my gastroenterologist, he chuckled and then told me that I should get it in time to be healed up for the surgery or well after the surgical wound has healed. I went for before.

Ode to my abdomen

It's January and I'm aware of how succeptable I've been to New Year weight loss advertising in the past. This year, all I want is to enjoy my strong body before surgery.

When I was 16, I had 2 temp ostomies in 9 months. The first was an ileostomy (where the end of the small intestine was outside my body for 6 months.) the second was after my ileum had been reconnected to my rectum and a loop of small intestine was outside of my body to let the new connection heal. 

When I woke up from my second surgery, my bellybutton was gone. I was cross with my surgeon and he (a former mechanic from the Bronx) said "I didn't do it. Someone else closed. It might still be there but got staples in. But if you did lose it, it's the ultimate rebellion. You'll never need a tattoo or piercing."

It was just stapled in. I was relieved as only a self-conscious 16 year old can be. 

I've lamented my abdomen for nearly 20 years. I try to have scar pride, but can't help to notice the buttock effect of a scar through a middle whenI look down at it.

But now that my middle will be changed dramatically and permanently, I'm feeling a lot of love for it and wish that I'd given it more respect in the past.

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.

"Ch-ch-ch-change

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.