Each handicap is like a hurdle in a steeplechase, and when you ride up to it, if you throw your heart over, the horse will go along, too. ~~Lawrence Bixby

Sunday, January 10, 2016

Coming Out....

It’s taken me a long time to decide to write about this. It’s not technically a part of my disability, but it is directly related to it. It’s also something I’ve thought of as quite private, but also that it might help other people to understand or to cope.

The radiation, which has caused the nerve damage to my feet and legs, hasn't just affected my lower limbs. Think about the organs that are in your pelvic region. Can you guess where this is going? Stop now if you’re squeamish.

When I had the original rectal cancer surgery in 2002, the surgeon thought he was doing me a favor by creating what’s called a J-pouch – essentially an internal rectum-like reservoir fashioned from the large intestine and designed to avoid a colostomy. I had a temporary ileostomy for a couple of months while everything healed up; it was pure hell and I couldn’t wait to get rid of it. Then it was reversed so I could, supposedly, poop like I was originally intended to. And along came chemo, which probably did a lot of damage to my intestinal tract (ironic, isn’t it?). And, of course, the radiation, unbeknownst to me, was in there happily doing its thing to the cells and nerves in my pelvis.

Image from Someecards
The J-pouch was never good – sometimes, it was OK, but usually I had very little control over my bowels; often I would go 15-20 times a day, and usually with very sudden onset. I tried so many things – complete change of diet, acupuncture, herbs, colonics, and on and on. Then after a few years it shifted – in hindsight (so to speak), I now know it was the radiation doing its slow dance. Sometimes poop would come spontaneously (shit happens!) and sometimes I would spend hours trying to evacuate it. I got a lot of reading done sitting on toilets. It pretty much took over my life. If I wasn’t pooping -- or trying to – I was thinking or worried about pooping. A pretty shitty way to live.

After putting up with this for several years, I finally decided there are worse things than having a colostomy (which is easier to manage than an ileostomy). I talked with my surgeon, my therapist, with Laurie and with friends who had been through all this with me; I conferred with other colostomates at great length, and finally made an appointment for the surgery in August of 2009.

Even though having a colostomy is not without its problems, it is light years better than what I was dealing with before. Once the initial adjustments were made – the correct fit, the right system (there are tons of options) – I’ve been almost able to forget about it. Oh, I worry about leaks and odors and the noises it often makes, or about the balloon that poofs out on my belly when it’s full of gas; sometimes the skin around it gets irritated. I can live with all that – I’m not tied to the toilet or afraid to go somewhere lest I have an accident. (Back in “the day” I could tell you where every public toilet was in the tri-county area.)

There is a lot of support out there for people with ostomies. I joined an online group shortly before surgery and got a ton of useful information, made some friends, and even managed to share some amazing humor. After I was a seasoned veteran, it was always heartwarming to be able to help someone who was new to the world of ostomy– you could almost feel the relief when they realized they weren’t alone and could get some peer support and straightforward answers. That forum has disbanded, but writing this has made me want to see if I can contact some of those folks. 

Image from Someecards
My favorite part of the online group was our sometimes wild humor. A couple of us came up with the Ostomy Dictionary, a bunch of terms in the style of Ambrose Bierce. It is still online in several places. This was one of my contributions:

Leg warmer, noun: a pouch, recently filled with “product,” (i.e.   poop) resting against a bag peep’s thigh. Has the temporary effect of a hot water bottle.  Desirable in winter in cold climates.

More definitions here.  Be forewarned: it's explicit.

And what else resides in that pelvic neighborhood? Well, for one there’s the bladder. Sigh. I’ll save that for another post. Let’s just say, I hope I won’t have to become a double-bagger (n: Bag peeps with more than one ostomy to manage.) 


Wildflower said...

Wow, Terri. I had no idea you went through so much hell. I can hear in your story that you have come a long way, baby. You have such strength and humor! My guess is, having a partner and good friends was/is extremely helpful. I have just come from the first meeting of my new group, Soul Sisters. There are four of us who are meeting and helping each other define our dreams, set goals, and get it done. We are the rare lefties of Condon/Fossil and we've all finally found sisters we can talk to about anything. At last.

Loads of peace to you Terri,
Love, Diana Wild

Terri said...

Thank you, Diana. Yes, having support has certainly eased the journey.

Sounds like you may have found Blowfish Sisters Redux!! Awesome.

Anonymous said...

Fellow PWD, here. (Though more private by nature.) So curious about what lead you to share this private/intimate details of your life, and how it feels now that you did it.

Terri said...

PWD? Not getting that..
I debated with myself for a long time before deciding to share it more publicly. Not sure what tipped the scale for me; partly it's an attempt to normalize ostomies, to get rid of the stigma that has long been associated with wearing a bag. I think it helps to be open and honest and include a bit of humor so that people I know have a better understanding of what I've gone through and how I can live a normal, happy life in spite of it. Does that make sense?

Anonymous said...

Person With Disability. Yes. Makes sense.