Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

The first of September.

>> Tuesday, September 1, 2009

Today, something shifted in the weather here in Tennessee. Every ounce of suffocating, humid air feels replaced by that crisp, teasingly cool breeze.


Around eight in the morning, fresh coffee in hand, I stepped outside to let the dogs relieve themselves, and it hit me. It's the first day of September, and nowhere near the end of the South's seemingly endless summers, but it was a break in the monotony. A glimpse of what's to come.

For the first time in a long time, I felt like I could breathe. I felt, finally, a genuine sense of calm take over the erratic, stressed, manic demon that had taken over my body the past few months.

There have been moments of relief here and there, but in that moment, sitting on my stairs, watching Louie and Sampson ruin the neighbors' newly planted rose bush with their urine, I had to admit it: I have not been myself recently.

A lot of it is the lack of sleep. The lack of genuine pleasure in what I do, in a field that used to excite and stimulate me to no end. A lot of it has to do with the colossal curveball that was thrown my way about two and a half months ago. A lot of it has been my fear to let go of the past, to accept that my friendships, my lifestyle, my priorities, have all changed overnight without my consent.

But most of it has been my inability to deal.

Yesterday, I had a mini-breakdown.

Upon my gastroenterologist's request, I met with Vanderbilt's colo-rectal surgeon.

For the past year, I have been having tri-monthly in-patient procedures at the hospital for stricture dilation. I was told last year, on no uncertain terms, that 13 years of rampant Crohn's and Colitis have left my intestines in a state of disrepair. Even if my disease is completely controlled, things have gone too far for medicinal intervention. I had surgery when I was 16 to remove a few feet of my damaged intestines, and they were able to reattach everything just fine.

But now, there's not enough of the good part to reassemble. I was told last year that I need an irreversible ostomy surgery, and that it was essentially my only option.

Being the medical rebel that I am, I took matters into my own hands to find another--even temporary--solution.

I have come to grips with the inevitability of wearing an ostomy bag. I might even give in without much argument in 15 or so years, because I don't want colon cancer and, eventually, I think I'll be done battling my digestive tract. But I'm not ready to give in just yet.

My doctors at Vanderbilt told me there was a simpler procedure, called stricture dilation, that could stave off the need for an ostomy for now. They also told me, though, that my strictures were too severe. It wouldn't work on me.

So I went to the Cleveland Clinic, the best hospital for gastroenterology in the world. The doctor I met with there told me without the slightest bit of hesitation that I am too young for an ostomy. He was beyond confident, almost flippant, about his ability to perform the stricture dilation.

And a month after that, he did. Successfully. For almost half a year after that procedure, I felt better than I ever have.

My doctor at Vanderbilt didn't want to be outdone. He is the best gastroenterologist in the Southeast, and so of course he could do the procedure too, and he could have done it all along and "Why did I go all the way to Cleveland when they could have done it right here in Nashville?"

Because you told me you couldn't do it, doc. That's why.

For the next year, he performed those procedures, always with success, every three months.

(My parents are still paying off the gargantuan bill from Cleveland Clinic. As it turns out, my insurance won't pay 100% for out-of-state fees.)

I always knew when I got pregnant, I'd have to decide what to do about my intestines. I just didn't think I'd have to decide so soon, so suddenly, with no preparation.

I've spoken at length with my pareonatal doctor about the procedure. She--we-- decided that the benefits outweighed the risks. Doing it during the second trimester, she said, would be infinitely safer for the baby. Doing it in the second trimester would also, hopefully, prevent the possibility of something more serious happening during the third, like a bowel obstruction or the need for emergency surgery.

So off I went to meet with the surgeon yesterday afternoon, ready to swallow as many potential risks as he could throw at me.

I didn't have my mini-breakdown until the car ride home. Jason was with me--he always insists on coming to these appointments, no matter how inevitably embarrassing the questions a gastroenterologist asks his patients may be.

The surgeon doesn't want to do the procedure now. It's not safe to keep doing them, he told me, pregnant or not. He said it's just as risky to do a procedure in the third trimester, and he only wants to interfere medically if I find myself at a breaking point. And I'm not there yet. So, for now, I wait, and I pray. I give myself the weekly shot of Humira, even though it does nothing for my strictures, and I hope I can make it through.

Leaving his office, I felt what seemed like a culmination of months of worry and stress fall over me. I don't want to wait, to pray, to hope I make it through. I want a solution. I want a definitive answer. I want to go back to Cleveland Clinic, to the doctor who didn't bat an eyelash at the thought of operating on me. I want doctors who understand why I want to try every single option before giving into an ostomy bag. I want a life not plagued by incessant trips to the bathroom and painful injections of medicine and hospital stays. I want to know, above all else, that the baby will be okay. And I can't, none of us can, know any of that for sure.

The breakdown was short lived. I fell asleep early that night (my weekend), and woke up to a new day. I am almost always able to recognize how much worse my health could be, and how amazing my life is. But sometimes, I let myself forget.

Read more...

Chronic illness? No kids for you.

>> Saturday, July 11, 2009

I know every inch of my gastroenterologist's office by heart. The cheesy wellness magazines, the smell of cleaner, latex gloves and the palpable fear of a new prednisone prescription.

I've come to tolerate weekly shots of intense medicine in my stomach each week, become so inured to the pain I just keep on talking about my day while I watch my fiance reluctantly push the button, wincing when he sees my face quickly tense up and my toes momentarily curl under.

I know where every single bathroom is located in every single place I've spent more than ten minutes--down to The Village Voice offices in New York City to countless Middle Tennessee Walgreens (and I know the security codes to boot). I can tell you which ones are the most frequented, which ones the most private.

I tried not to laugh in my fiance's face yesterday when he said he'd used the bathroom almost ten times that day (he has the stomach flu). Ten times is nothing. Try twenty. Thirty. Even forty when things have gotten really bad.

I've been through a lot because of Crohn's Disease. But does it mean I wish I'd never been born? Hardly.

In fact, I'm grateful. Grateful for the trials, the necessary strength, and the perspective it's given me.

Back before I got pregnant, when the idea was a fleeting thought in my mind--an undefined "one day in the future"--I stumbled across an article in The New York Times about Crohn's and procreating.

"Risking Illness for Pregnancy," written by a Colitis sufferer (something I also, joyfully, have).

The column is hopeful enough. Worried that her cliched clock is ticking, she begins to question if she can get pregnant with a chronic illness, and if she even should.

"My doctor assures me that I don’t have to choose between health and motherhood," she writes, "that the odds are in my favor. But once your body has betrayed you, as mine did when my immune system began shredding my colon like cat claws on a sofa arm, I quit trusting the value of statistics to inform my decisions."

Exactly my (former) thoughts. I always assumed I probably couldn't get pregnant. I'd already come to grips with it, and, accordingly, convinced myself I didn't want kids anyway.

After more than a decade of being told I'm sick, sick, sick, of new diagnoses and health fears, it's not easy to convince yourself that something just might go right inside your body.

But the writer's struggle deciding whether or not to conceive wasn't what caught my attention. It was the comments. The insensitive, infuriating, self-centered comments.

Dozens took time out of their day to tell this woman--someone who's suffered enough--that her husband should just keep it in his pants. People who are sick shouldn't conceive, some wrote. Their poor children don't deserve the *tiny* risk that the disease could be passed on.

One comment:
"Adopt. There are thousands of ready made children out there. Parenting is just that — no guarantee that your own child is going to be special or wonderful and ps your condition may well be hereditary — I know Krohn’s is…"

I didn't change the spelling of Crohn's to exaggerate any ignorance there. They did that all on their own.

The author's point wasn't solely the fear of passing on the illness--it was also about the societal push for her to have children, and her own struggle with whether or not she actually wanted to. And, yes, adoption is a wonderful option for some. It was what I always assumed I would do one day, because of the aforementioned fear that my body would continually betray me.

But here I am, pregnant. Against all the odds. Despite precautions taken to prevent it.

The risk of passing it on is small--about 13 percent. But would I give it up because of that number? Hell no. Would I give it up because I honestly thought I couldn't give a child--Crohn's or not--a life worth living? Well, that's another story.

But I wouldn't take back a single part of the DNA my parents gave me. Crohn's included.

Every mother is facing a huge risk. There are infinite things that could be wrong with your child. There's not a whole lot you can do but prepare yourself for what's to come.

And if worse comes to worse, my mini-me will just have to deal with a mommy who uses the bathroom more often. And if--God forbid--I did pass it on, they would never have a better advocate, a better person to show them that it's not the be-all, end-all of life and wellbeing.

Do I wish my parents had forgone creating me, just because my aunt has Colitis, because my grandfather has Crohn's, because of the risk that it could have been worse, or that it could have been just what it is--a life full of stomach problems?

Not in a heartbeat.


Read more...

  © Blogger template Simple n' Sweet by Ourblogtemplates.com 2009

Back to TOP