Living With Jen: Coping with the Tough Stuff

My first two months as an ostomate; facing the challenge with a sense of humor.

So, it’s been a while – 8 weeks, 5 days, 5 hours, 11 minutes, since I last posted anything. Yes, I have a dang good excuse. No, I am not getting into it now; enough to say there was a major, medical crisis.

Right now, there is something I’m dying (wrong word choice) eager to tell you about.

I gotta tell you about ‘Jen’ – my newest acquaintance, closer to me than anyone or anything has ever been or will ever be. And I say that with mixed feelings.

Living with a life-threatening chronic disease ain’t no sweetbread and ofentimes the fixer-upper is big and ugly and all up in your face – not to be hidden or side-stepped. Then you have to find a way to face it head on while keeping your pride and dignity intact.

The first time I saw Jen she scared the bejeezels outta me – not at all a pleasant meeting. To say she repulsed me would be a gross understatement. I barely acknowledged her presence, turned my head away and did my darndest to un-see what I had seen; to forget that she even existed – as if that were possible.

‘Jen’ my brand-new, strawberry-red stoma.

You see, Jen is my newest body part (for better or for worse, for richer or for poorer and all that stuff); my brand-new, strawberry-red stoma – standing about 25 millimeters tall and 35 millimeters around. Yes, she takes up a lot of real estate on my belly.

Now if you are like I was before this last crisis of mine, the word stoma will probably take you back to high school plant biology: stoma – one of the pores on a leaf that allows plants to breathe. Well, Jen is not that kind of stoma. Let’s get on the same wavelength here.

When the doctors got done snipping the cancer out my gut, they deliberated, then concluded that my best chance for long term survival was not to try to reconnect the two pieces of intestine that were left. Instead they did an ileostomy. That means they poked a hole in the abdominal wall and stuffed the end of the small intestine through to the outside, so digestive waste products would be able to leave my body via that new route. Gross, I know, but what can I say?

Sh*t happens! Whether you want it to or not.

So, Jen must always wear her little baggie (ostomy bag) and guess who gets to clean up????? Why none other than yours truly. Beginning to see why I have such mixed feelings about Jen?

Jen and I

But she is my lifesaver, so I guess I should be grateful . . . and really I am. Dr. Russ warned that she MAY have to stay with me permanently, but, there is always that possibility that one day we may part ways – dare I dream of it.

Anyway, I am earnestly trying to get along with Jen.

For starters, I named her; sort-a figured that if we were to become intimate friends, we should at least be on a first name basis. That would be a logical first step for any long-term relationship. I mean, how can you live with someone 24-7 and don’t know what to call her?

Yes, my stoma is a ‘she’. I am sure of it – the incessant yammering, the constant compulsion to remind me of her presence, the irrepressible need to voice an opinion on just about everything – especially food. She is perpetually grumbling and squawking about what, when and how much I should eat. If only she weren’t so bossy!

She gurgles when I try to sleep on my back but groans when I roll over on my side; gripes when I bend over to tie my shoe laces and balks about the way I wear my seat-belt, not too low, not too high, just the right distance away from her. If only she weren’t such a stickler!

High maintenance? Definitely. And she has no qualms about butting into my private conversations (the busybody!) – just ask my husband, he’d back me on that score.

We go shopping together, Jen and I, but she doesn’t pay for anything (the cheap flibbertigibbet). The truth is, she insists on going shopping with me – as if I can even stop her – and I don’t mean that she just tags along. She dictates what I should buy! I must select loose fitting blouses – nothing that would make her stand out too much as she is very particular about her appearance (I am too). Pants and skirts must have an elasticized waist – nothing to squeeze too tight, her majesty demands comfort. If only she weren’t so fussy!

The anticipated ‘box with a smile.’ Jen’s stuff was not in this one. Probably next time.

Recently, I’ve found myself shopping online for toiletries just for her, and outfits – comfortable and tastefully colorful – apparel that she can lounge around the house in!

I have to admit though, that shopping for Jen has moved me one step closer to accepting her presence in my life. I think I may even smile when the UPS guy drops ‘the box with a smile’ on my doorstep.

We have become pretty close now. I actually made a few outfits for her myself and enjoyed doing it – coordinating outfits for me and my new bosom buddy and possible life-long pal. Sigh.

Jen’s first custom-made outfit

Jen and I have been together almost 2 months now and beginning to have some good days; days when we’re not bickering, and peace reigns for a couple hours at a time.

I keep trying to learn as much as I can about my stoma and the world of living as an ostomate (someone who has a stoma) – not just knowing, but really understanding the ‘how-to’s and the ‘why-not’s; and being able to look past the ‘what-if’s and shouldn’t-I’s.

Scouring the internet, I was relieved to find that my situation would no longer be considered a true anomaly. In the USA alone, there are over 130,000 ostomy surgeries yearly (I couldn’t find stats for Barbados). A huge community is out there sharing similar experiences. There is even an internationally recognized “World Ostomy Day” (first Saturday in October).

I think I am finally past the sentiment (well, almost) that Jen is one of those ‘dirty little secrets’ that must be kept in the closet at all costs. I am growing in appreciation for all she is doing to keep me alive and well. So what if I always have to foot her bill?

For now, I am thankful we are inseparable.