One Year Later, Back To The Start

When I began writing here one year ago, May 13, 2013, kicking off what was to be the beginning of the end of treatment – the ‘final’ surgery which, as those who’ve followed my journey are aware, would instead become the first of three major intestinal surgeries in under a year – I had hoped that today, May 13, 2014, I’d pen an anniversary post detailing a return to athletic competition, of enjoying fulfilling employment, or perhaps having resumed the education I had to forgo back when this all started.

Writing about a life without constraints, without limits. Marking the end, or the imminent completion of, the planned recovery.

I began this final leg of treatment not just hoping for the best, but expecting it. There was no ‘preparing for the worst,’ because the worst had already past. Against all odds I’d already survived, successfully endured, the most life-threatening consequence of the illness.

Right?

Man, what a year it’s been. A year of recovery, and of setbacks; of progress and regression; of fighting to rebuild only to be torn down, repeatedly. It’s been twelve months of long, sleepless nights questioning my future, my worth, and often, the value/wisdom of continuing to persevere.

There are things I’ll get into further down in this post, medical aspects I haven’t discussed simply because I lacked the courage to do so before now, but given that this area has intersected with the intestinal side of things – the status of the gut directly affects what can/cannot be done – I suppose there’s no better time to open up and discuss it too, if only to provide insight into the total fallout of the intestinal disease.

First thing’s first, though: The incredible rebound following the third (and *actual* final) surgery, and being absolutely blindsided on Easter weekend with a fairly significant setback.

As detailed in an update (posted for family and friends on Facebook) following the first follow-up with the surgeon, the post-op recovery was going phenomenally well. Everything was progressing smoothly, I felt the best I had both physically and emotionally in a long, long time, and save for having to make a few return trips to the ER for a balancing of electrolytes and fluid top-ups, and the predictable weight loss, things looked promising.

In fact, as I noted one night on twitter, things were going “frighteningly well.”

Though the physical progress I’d made since the May/June ’13 debacle had suffered greatly, when I again returned to the gym, I felt confident; strong, even. Yes I was thinner than I was after my return following the first two surgeries, but I was in much better health. My organs weren’t failing, or in the recovery-from-failure process, and I felt absolutely nothing in my gut/abdomen — and that felt wonderful.

It felt normal.

But on April 18, Good Friday, that blissful nothingness disappeared, replaced by an intense, familiar pain that crept its way up my back, around my ribs, and deep into my core.

I knew this pain. This was obstruction pain. But how could it be? Everything I’d taken in was either liquid (supplement) or cooked and pureed down to baby food texture. Even eggs went through the Magic Bullet. I had taken no chances.

So what was happening?

As it turns out, obstructions can be caused not only by what happens inside the gut, but what occurs surrounding it, too.

The first few months post-op are always higher-risk, as scar tissue is moving around, forming in some areas, breaking apart in others, and the gut does not like to be touched. All it takes is for some incidental, seemingly innocuous contact by adhesions to trigger a total intestinal shutdown, which is precisely what happened.

Getting to that diagnosis, however, was an excruciating process. Despite a near-constant stream of narcotics – morphine, fentanyl, demerol, hydromorph – nothing would kill, or even dull, the pain. Hour after agonizing hour passed as the Emergency team assigned to me waited on various diagnostic results. It was hoped that a definitive diagnosis could be gleaned from a simple set of abdominal X-Rays, sparing my body the radiation of yet another CT or MRI, but when the images failed to produce a clear enough picture, an MRI was ordered. One positive on the night was the blood work, which, as the nurse remarked, appeared “frustratingly unremarkable.” And though the blood failed to provide insight into what was happening, it confirmed that my kidneys had, in fact, fully recovered from the renal failure experienced in May/June.

Which meant they could go ahead with the MRI, complete with both oral and IV contrast, allowing for a crystal-clear look at not only what was happening, but the precise cause.

After the adhesion-initiated obstruction was confirmed, I had the NG – the tube that would drain the contents of my stomach and intestine until the obstruction resolved – successfully inserted … after FIVE attempts.

Five.

Now, I understand that, being a long weekend, and given that it was now the wee hours of the morning, perhaps the more-experienced nurses weren’t working. But what I experienced that night was completely unacceptable: A fresh-out-of-school nurse with more confidence than skill screaming at me for her failure to place the NG.

Blood poured down my face as I worked to quell my rage, every failed insertion sending a fresh cascade of plasma out my nose and down my throat. Finally I’d had enough and told her in a not-so-polite manner that I was done.

I’d had it.

She stormed off in a huff, petulantly tossing aside the supplies, mumbling something about me “just sit(ting) there in pain, then.”

Apparently she advised the surgical resident that I’d refused the NG, which he quickly learned was not the case after I begged him to insert the tube, as the nurse appeared to have no idea what she was doing. She even refused to provide water to drink/sip during insertion, which is HOW THE TUBE IS INSERTED.

By swallowing.

“Just dry-swallow, or pretend to swallow,” she’d instructed.

The resident was quite apologetic and agreed to place the NG, which he did successfully in a single pass. Despite having the NG properly inserted (X-Ray confirmed and all), the gut was having none of it. Rather than settling down, allowing the suction to relieve the pressure, the contents of my intestine were bubbling up into my stomach, which had me violently throwing up intestinal content for the next 6 hours.

It was horrific.

When the on-call surgeon arrived mid-morning, upon seeing me covered in a mixture of fresh and dried blood and vomit, he was livid.

“What the hell is going on here?” He bellowed. “Why are you torturing this girl?”

When an NG is properly placed, there should be no vomiting. Yet the entire night, that’s what happened. And no one did a damn thing.

Mercifully, it wasn’t long after the surgeon’s lecture to the overnight nursing staff that I was finally moved to a bed on Unit 83, where I was greeted with warm smiles by familiar faces, including the nurse who saw me through some of the scariest nights all those months ago.

Finally, the recovery could begin.

It wasn’t initially clear whether surgery would again be required, or if things would work themselves out with a gut rest, but after 48 hours there were clear signs of progress, and suddenly, the gut began pouring out fluid, desperately trying to purge the obstruction. Though the ongoing, drastic fluid loss resulted in an alarming drop in blood pressure, progress, for the most part, was pressing ahead, and just shy of one week after the obstruction hit, enough progress had been made to allow for discharge.

Initially the fluid loss continued at too high a rate for me to keep up, so, as was the case after the third surgery, I returned to the ER for some electrolytes and fluids — a total of 6L the first week alone.

Slowly, as the intestinal swelling subsided, the fluid uptake returned to normal. Each day saw me taking in (and absorbing) more food/nutrition, and after hitting a post-obstruction low of 85 pounds, the weight began to rebound.

Today, just under one month since the obstruction, I’m sitting at 89 pounds.

One year ago, heading into the first surgery, I was a strong, solid 130 pounds, carrying 8-10% body fat. I was lean, chiseled, and athletically unstoppable.

After cheating death, fighting my way back from the brink — 3 surgeries, 2 partial obstructions, and one total obstruction/full intestinal shutdown, I’m back to square one in the rebuilding and the recovery.

Which, in the grand scheme of things, is a far better fate than where I could’ve been (or not been) at this point.

With patience and perseverance, I’ll rebuild as I’ve done before, and though it’ll be a slower process than I’d like, the body can only rebound so fast. It cannot be forced. But I will return to peak athletic form, of that I have little doubt. And because I’m again starting from scratch, I’m going to document the journey, not only for myself, but, in the end, to share here with you; with everyone who has accompanied me along this journey.

Not many people get to see what it’s like to rebuild a body after catastrophe hits, and because I’ve done this before with great success, only to think back on it later, wishing I’d in some way recorded the process, I figure now’s the opportunity to do just that.

Plus, it gives me an extra sense of purpose in the rebuild, knowing others are along for the ride.

All told, the physical and intestinal recovery from here on in will be a full 2 years.

It’ll be a minimum of 12 months to learn to work with the now drastically shortened gut, finding ways to deliver the most calories/nutrients in the most efficient means possible. It’s very much a trial-and-error process, but once a workable dietary routine/regimen is established, it’ll be relatively smooth sailing, gut-wise.

For the first 12 months the physical recovery will very much be dictated by the gut. The body can only rebuild if it’s able to properly absorb the nutrients provided. Training will depend entirely on intake/absorption, and so long as the weight continues to creep upwards, so too can physical exertion. By the end of the first year I will have settled into enough of a routine, and the gut will have normalized enough, that I can begin ramping up the intensity and demands physically, and by the end of year two I’ll be back to elite-level fitness, a healthy, stable weight, and peak physical condition.

Or, so goes the plan.

Surely there will be some unforeseen detours along the way, but the strategy that’s been laid out gives me great confidence in my ability to see this recovery through.

—-

Though I’ve been open about the emotional fallout resulting from all I’ve been through, I’ve restrained from discussing what’s arguably the most personal issue I’ve faced to date, one which has always been part of the overall treatment process, but until now was able to be kept separate from the intestinal aspect.

I will try to be as concise and to-the-point as I can, as I can always expand/elaborate in future posts. But for now, an introduction to the issue:

As an elite female athlete, it’s quite common to lack a period. The combination of physical training demands and low body fat levels simply do not allow the body to prime for pregnancy, so menstruation either ceases or is delayed. It’s par for the course for many female athletes, so it’s not necessarily something to be concerned about.

In my case, however, it was much more complicated.

As people back home are well aware, I’ve always had an incredibly lean, athletic body, and I worked damn hard to attain it. Naturally, with low levels of body fat and extreme energy expenditure, there wasn’t exactly anything to spare for a typically developing female body.

The result?

A rather androgynous figure. Which, truth be told, I was entirely comfortable with. Even through high school, I was wholly unconcerned by my lack of femininity, as I valued my athleticism, took pride in my musculature, far more than I coveted a figure.

Deep down, however, I was terribly self-conscious about it. But, I reasoned at the time, it’s part of being a female athlete. It’s not going to be forever, and really – what mattered to me then? Fitness. Strength. Performance. I wasn’t focused on relationships, had no immediate plans for children. So just keep on keeping on, I thought.

The rest will work itself out in time.

The first indication that something was amiss came after the very first intestinal surgery (back in ’06 — I’ve now had a total of 5 major gut operations), when my surgeon noticed abnormal atrophy of the ovaries.

Because I was so critically ill at the time from the intestinal illness, it was assumed I lacked a period because nothing was functioning. But, as my surgeon noted, this was different. There was clearly something happening – or not happening – in reproductive system.

I do have a family history of amenorrhea: my aunt, though she developed typically, ceased menstruation, and it wasn’t until she began undergoing diagnostic tests that she miraculously – and I mean that literally – became pregnant. Her case was such a rarity that it was subsequently documented for the medical books.

Given that history, I began working with my endocrinologist (who had already been overseeing my thyroid care) to deal with my body’s apparent, and unexplained, refusal to produce enough estrogen on its own.

I began hormone replacement therapy (HRT) at a low dose, just enough, it was hoped, to kick-start some sort of reproductive function.

Nothing.

Slowly the HRT was increased, and progesterone was added, but little came of it. The boyish figure remained, as did the uncertainty regarding fertility.

It has now become apparent, though, that the hormone levels needed to have any significant impact interfere with my gut’s motility, wreaking havoc on the already delicate peristalsis. And the last thing I need is another potential trigger for obstruction.

So, given recent events, it’s been decided that the wisest course of action for the long-term health and function of my gut is to abandon the HRT, which means letting go of any hope of having children; of the simple desire for femininity.

When I’m at my best athletically, none of this matters. When I’m at the gym, amongst my people, I fit in perfectly. Maybe it’s because I’m not in my normal, physical state that I feel so vulnerable; that the decision to forgo further HRT, though the right one, has hit me so hard.

Cut so deep.

Because, for the moment, I feel I don’t fit in anywhere. In time I’ll attain my physical best again, sure, and though I no longer have a future in competition, as my gut will not allow it, I will continue to train, to be my physical best, for myself.

But what then?

Life doesn’t exist in the bubble of athletics.

As a woman, I can’t help but feel like, now, I have nothing to offer.

As a child I’d imagine what it’d be like to become a mother, yearned for the day I’d have a body that’d catch the eye of admirers, dreamed about becoming a strong, confident, successful woman.

Of all the things on that list, strength, in every sense of the term, is something I’ve mastered.

I suppose that, now that there’s a sort of finality about it, I’ll come to terms with the cards I’ve been dealt in this area, and perhaps by discussing it, writing about it, I can learn to be comfortable in my own skin.

It has long been something that I joke about in private; am ribbed about by my sisters and closest friends, though always lovingly. Perhaps I’ll now be able to poke-fun about it publicly, and even if no one else joins in out of fear of offending (which you cannot do, by the way. Even if you tried to offend, I guarantee anything said – whether it be seriously or in jest – would pale in comparison to the things I tell myself), you’ll at least be in on the joke.

And by shedding light on the matter, I can feel like I’ve explained myself – whether or not an explanation is necessary/warranted – so that in the future, when I inevitably reunite with old friends or finally meet face-to-face with longtime online companions, I can feel less guilty about failing to meet expectations.

Even if those expectations are entirely my own.

That said, along with the intestinal and physical recovery, I’ll be working over the next couple of years to rebuild my confidence, rediscover my worth, and find my place.

Though it’s been a long and difficult year, the fact that I’m alive and writing this update is in itself worth noting. There have been many trials, yes, but there’s also much to celebrate: My diseased gut is gone, my healthy gut is not just anchored, but functioning. I am free of pain, of the chronic, unrelenting distention/discomfort, and am free, and physically able, to resume any physical activity my heart desires.

The future remains bright, the end of recovery remains in sight, and I will get there, though it’ll take longer than initially planned one year ago.

Fortunately, once the recovery is finally complete, I’ll have all the time in the world to catch up on life — and the health to allow me to live it.