Securing The Line

What I’ve come to appreciate about writing here – about having this safe space dedicated solely to the medical, the intimate, and the personal – is the ability to gradually expand on the backstory; to provide a more complete picture, a better understanding, of the entire medical journey.

It was a wrenching decision to publish the visual timeline, but I know that for those who’ve not lived it, to fully grasp what I’ve experienced, those raw, unvarnished images were necessary.

Beyond that, the photos can serve as a point of reference as I revisit those years, touch on events which shaped my current approach to recovery, transformed how I perceive myself, and can help shed light on why, as difficult as the physical aspects of recovery have been, what’s proven a far greater challenge than rebuilding the body is rebuilding the confidence.

Paramount to this recovery has been the matter of trust: Trust in my medical team, trust in the process, and trust in my body’s ability to persevere. Had I not been through the intestinal rehabilitation process once before, the past two years would have been far more daunting than they have been. That’s not to say the process to this point has been heartening, but knowing what to expect — keep challenging the gut, keep forcing it to deal with what it cannot, and the intestinal lining will slowly regenerate, the gut’s ability to process nutrients will return, and the physical recovery will follow — allowed for a certainty I was without in the previous go-round.

I knew it was only a matter of time before the gut kicked in, but waiting for that moment – pouring myself into the recovery day in, day out for two years without once deviating from the plan, to no avail – was excruciating.

The series of setbacks,  each which saw gains months in the making lost in a matter of weeks, had me blaming myself for my body’s lack of cooperation; I racked my mind for ways I’d somehow sabotaged the process.

When I’d become restless, agitated by the perpetual stagnation, I’d revisit emails between my gastroenterologist and myself from 2008, when the initial phase of the (first) GI rehab was rife with backward momentum. As the caloric load climbed, the weight still continued to plummet.

I wrote: “This is it, isn’t it? My body is going to starve itself to death. It’s too late. We’re too late. It’s only a matter of time.”

I received a reply of reassurance, told this was expected and that soon the tide would turn. “The deterioration of your gut didn’t happen overnight; neither will its revival. You must give it time. Trust in the process.”

It was following the pneumonia/sepsis – the most recent and by far, most frightening complication  – that this recovery’s momentum shifted. I’m not sure what it was about those few weeks that breathed new life into the gut, but as I recuperated from the internal toxicity, worked to regain full lung capacity of the collapsed lung, the gut – having itself suffered from the sepsis – not only regained its (at that time) still-quite-limited function, but began to improve on it.

I was once again beginning anew: every post-severe complication acts as a physical-recovery reset. And though I was roughly 10 pounds heavier (92 pounds) than I was a year prior ( 85 pounds, the previous refreshed starting point) I was still 40 pounds shy of my 2013, heading-into-surgery state (130 pounds).

Since discharge from the pneumonia/sepsis hospitalization in March, it has been nothing but progress. I’ve been able to reintroduce foods which, even when pureed, my gut had long-been unable to process, which has allowed me to rely less on meal replacements (between-meal meals in the form of Boost) for adequate nutrient uptake.

I began to chart solid measurable gains, and not just at the gym, but on the scale.

My weight is taken in a(n as) fasted (as possible) state — in my case, on the 24/7 intake cycle, the point between two specific meals (my 5-hour grace period) — and in the nude, as to control for every possible variable. Even so, as the weight began to climb without even a day’s relapse, I began to request double- and triple-checks to satisfy my mind that this wasn’t a fluke; wasn’t a temporary glitch of the scale.

As weeks turned to months and the digital readout inched closer to displaying triple digits, and after finally hitting that crucial 100(.4!)-pound mark, it became undeniable that yes, these advances were real, the gut had finally ‘woken up’, and full* recovery is not only possible, it will once again be achieved.

This recovery process will have an end, not just in theory, but in reality.

*Full recovery, of course, might not be recognized as such to those unfamiliar with what I’ve been through. For me, a full recovery means the body having regained the lost mass, (what’s left of) the gut having regained the capacity to maintain weight and sustain life, and me having rebuilt athletically, able to continue my lifestyle, even if I do so independent of any competitive sphere.

I’ve come to accept that I will forever be restricted to a fully-pureed intake. There is simply too much internal scarring, too much irreparable intestinal trauma for the resumption of even a relatively-normal diet.

Even if the gut were to somehow regain full processing ability, the threat of obstruction remains high. I’ll always battle with adhesions, but should another full obstruction hit and surgical intervention be necessary…

To quote my surgeon: “You cannot afford to lose any more intestine.”

In time, after the weight has fully returned and stabilized, I’ll be able to resume a normal-ish (not round-the-clock) intake schedule. It’ll always be a delicate balance, having to adjust according to the fluctuating status/function of the gut, but in dealing with this daily uncertainty throughout recovery, I‘ve learned how to adapt, react, and adjust when challenges arise, so  I have no doubt in my capacity to become as independent, as productive to society as possible.

I can say with certainty that by the end of 2016 (though I’m aiming for this time next year) I’ll have fully concluded this  recovery. The gains, though slow, are steady, and I expect they’ll continue apace through to the finish.

In 12 months’ time, while my appearance will have returned to normal (I’ll look like me again, the Alheli in my profile picture) how I continue to see myself, my confidence in that appearance, will require more time to heal.

The image of my 2004/2005 state of emaciation is taken from behind, but if you compare that 58-pound body to the 85-pound head shot from May 2014, I’m sure you can deduce how I appeared from the front.

Upon seeing me, people either gawked in horror or desperately averted their gaze. Every now and again, when a given memory is triggered, my mother will recall what it was like. When having blood taken, for instance:

“Do you remember,” she asked, arriving home from her appointment, “when we’d walk in for your lab work, and everyone in the room would go silent? They’d just sit and stare. Then, it seemed in unison, every head would turn away. Some faces, streaming with tears. Do you remember that?”

Yes. I remember quite clearly.

And it happened often, everywhere I went. Those reactions were understandable, though. Those are unconscious, human responses. When you’re suddenly faced with someone who’s flirting with death, how DO you react? No one wants to be seen staring, but neither does one want to be caught looking away in revulsion.

There is no proper reaction, no single appropriate response. But when you’re the subject of the scorn, repeatedly looked over with repugnance, that scathing rejection is internalized. Over time, it becomes an automatic sensation, one which encapsulates your entire being, every time you’re looked at.

Every time.

It’s why, even after I’d regained my health (as seen in the images from 2010 through 2013) I continued to feel like the gaunt, emaciated repulsive figure from ’04/05. If you ask those who know me best here in Calgary, they’ll confirm that my automatic reaction when asked to get in on a picture, is one of fear.

They’ll attest to my self-hatred, my non-existent self-esteem, my chronic sense of unworthiness.

It’s only now when I look at those ’10-13 photos that I can appreciate how healthy a state I’d returned to. How not-at-all-terrible I looked. Only now can I see how others saw me then.

That ’04/05 skeletal figure still haunts: When I have nightmares, I dream of being back in that state. In those dreams, I’m once again starving to death; desperate for help, desperate for answers, searching for food, begging for life.

Every nightmare is a relived march toward death, one which revives the surgical traumas upon awakening.

It’s those post-nightmare days where the world acts as a trigger: Any random thing can – and does – set the stage for a full-blown death panic attack. But I’ve become quite adept at managing, so I do what I can to simply get through those days, trusting that tomorrow will be better.

And it always is.

Which brings me to Project Smile.

One the few aspects of my physical self I’ve never been ashamed of is my smile. Knowing I’d lose it without the necessary intervention, the falling through of funding threatened to prove the ultimate devastation; that final emotional blow from which I’d not bounce back. Project Smile was my only hope, and had it failed, it might have become the tipping point for the mental burden.

When I said you changed everything — that was an understatement.

Suffice to say, my smile isn’t all that was rescued.

As I head into the grafting surgery this morning, the first (and most intensive) of the many procedures this treatment will entail, I’ll be thinking of all your messages, your love and encouragement, your understanding and acceptance.

Today, Project Smile officially joins the greater recovery process. And with that process now in full swing, my body finally onside, that floating end-of-recovery finish line has been secured.

And I trust you’ll be there, so we can cross it together.

The Day Nothing – And Everything – Changed

(For those seeking a quick link to Project Smile: www.gofundme.com/apsmile )

—–

When you want nothing more than to be well – to be seen as being well – after being ill for an extended period, it’s difficult to let on when something goes awry, if/when a new problem surfaces, because over time, one begins to develop a sense of shame about it; an embarrassment that you’re not only still unwell, but there may be another issue to deal with, a further delayed recovery; more treatments, another detour on that road to wellness.

It’s for that reason that I remained silent when, a few months back, a lump was found in my right breast. I harboured the fears quietly, stomach in knots for weeks as I awaited test results. (Being on the estrogen-progesterone cycle, the elevated risk of breast cancer is always top of mind.)

I wrestled with how, if need be, I’d disclose a new diagnosis; introduce this new part of my medical journey.

Thankfully, the how-to-best-address-the-situation was a decision I never had to make, as results ruled out cancer, allayed fears of a tumour. It’s not entirely clear what the lump was, but because I have so little breast tissue, it may have just been a fibroid/other benign mass that otherwise would have gone unnoticed had there been denser tissue surrounding it.

(I do have a follow-up scan booked for June, however, as a precaution.)

In addition to the solace the nothing-to-be-concerned-about-at-this-point diagnosis brought, was relief that I’d said nothing; that only my mother and I (and my GP, of course) knew what was happening.

“How embarrassing,” I thought, “to think I’d have worried people for no reason at all.” 

 I couldn’t help but feel as if, without a dramatic, dire diagnosis, I’d be seen as having made a seemingly trivial matter into something more than it was, even if that ‘more’ was what had been feared.

It’s this thought process that keeps me from updating more regularly, and why, when coming down with what was thought to be a severe respiratory/gastro virus combination (yes, I had my flu shot) I did little more than make passing mention of a fever, even as I spent the week shuttling myself between home and emerge (my mother, still in Ontario, had been away for weeks) in the early morning hours for IV hydration and electrolytes; my body struggled to combat severe dehydration, the inflamed gut unable to carry out even basic absorption duties.

Though scheduled to be away for the entire month of February, given my worsening state, I asked mom to cut her trip short, and she did, flying home Sunday, February 22.

I’d spent that Saturday-Sunday overnight period at the hospital getting ‘juiced’, and once home, alternated between sleeping and eating what little the gut would tolerate.

Because it was Oscar Sunday, though I felt like hell, I found Twitter a welcome distraction to snark along with everybody else. “It’ll do you good,” I told myself, “to keep your mind busy, even with trivial matters.”

After a bit of enjoyable banter, I made myself a snack, having somewhat of an appetite for the first time in days.

But it wasn’t long after I’d finished eating that things began to rapidly deteriorate, feeling not just unwell, but frighteningly so. I was chilled to the bone and shivered uncontrollably even as my temperature spiked to 104. I sat frozen in place, too weak to move, though I desperately wanted nothing more than to sleep. I called for my mother, who suggested we go to emerge, but I was simply too exhausted.

“In the morning,” I said. “Please, just let me sleep.”

She settled me in on the couch and herself on the adjacent chair; she’d been awake now for over 24 hours, had to work in the morning, but kept vigil, as always, without complaint.

It’s when, after a couple of hours, I tried to get up, that I knew I was in trouble. My vision blurred as I struggled to remain conscious; I couldn’t see, couldn’t hear anything. My legs buckled, body convulsed, heart beat so rapid and furiously I thought it might burst through my chest. 

And I couldn’t breathe. Each time I tried to take a deep breath I felt a familiar stabbing in my lower back, just beneath my ribs. This was a feeling I recognized from 2013. Just as I know obstruction pain, I knew this pain — this was lung-collapse pain.

I – we – didn’t think I’d make it to hospital.

Upon arrival, the crash cart was waiting. I was rushed through triage, taken back where I met with the same emerge doctor I’d seen the previous night/early that morning, and he was visibly startled by the drastic change in circumstance.

It was a race against time to secure the multiple lines needed not only for IV and drug delivery, but for injection of contrast during diagnostic scans and, if need be, anesthesia for surgery.

The veins, of course, were less than cooperative, either collapsing or blowing outright. It took about a dozen tries before two good sites were secured, during which time blood tests and cultures were examined, doctors working to determine just what was wrong.

My liver counts were all over the map, and there was indication my gallbladder was in distress. On top of that, I’d developed sepsis – the cause of that uncontrollable fever. Potent IV antibiotics were initiated as I underwent further physical examinations, spending the better part of the night under the care of a surgeon whom I recognized from my 2013-2014 hospital stays. Like my (GI) surgeon, he was happy to discuss the medical things in detail, explaining what the concerns were regarding the gallbladder and liver, the connection between short-gut syndrome and various gallbladder and liver ailments, and, depending on what the diagnostic tests did or did not show, the various options/scenarios I’d be met with.

And, it turns out, we share an interest in politics. So, though I had nearly no ability to speak – my voice had been gone for days – I managed to enjoy a good-natured back and forth, which not only helped lighten the mood, but brought a welcome sense of comfort; a feeling of normalcy. It’s those little things that have the greatest impact when events are chaotic, and as frightening a situation I was in, that surgeon went out of his way to lighten the burden.

And I am so, so grateful for him.

I was formally admitted that morning and moved to Unit 82, the ward just down the hall from my usual home on 83. The IV antibiotics ran round-the-clock as diagnostics continued: Ultrasound, X-ray, CT, and ultimately, a specific, 45-minute long MRI (MRCP). 

While the CT definitively diagnosed the pneumonia and partially-collapsed lung (I knew it!), the MRCP was to determine whether I’d developed ascending cholangitis (infection/blockage of bile ducts in the gallbladder) or sclerosing cholangitis (scarring/blockage of bile ducts in the liver), both of which, I learned, are complications of my short-bowel syndrome. And, given the sepsis and areas of pain/inflammation (not to mention the results of the blood work), it was suspected that one of those two possible diagnoses would be the source of infection, meaning some sort of surgery would be required.

Because there has been lingering concern over my liver, the constantly fluctuating, and sometimes alarmingly high, counts always raising red flags, I expected the MRCP to finally confirm what had long been feared: liver disease/sclerosis, more fallout from the years of untreated ulcerative colitis. A diagnosis which would once again throw the recovery into question; would require new doctors to be recruited to the team, further treatments, and present a once-again uncertain future.

You can imagine the delight shared between myself the and medical team assigned to me as they shared the results of the MRCP: No signs of infection or blockage in either the gallbladder or liver, and zero indication whatsoever of disease in either organ.

Not that the sepsis and pneumonia weren’t incredibly serious in themselves, but knowing that’s all this was, a temporary and very fixable bout of illness, brought me to tears.

Though unexpectedly sidelined for a few weeks, everything else is still a go, recovery remains on track.

I still had to finish the course of IV antibiotics, though, and the partial-collapse of the lung had just alleviated, so I was transferred to my ‘home base’ (Unit 83) to finish out my hospital stay, where I was met with the usual smiles, hugs, and tears from those who’ve cared for me so many times.

And though too busy to stop in, hearing my surgeon’s voice in the hall as he made his morning rounds provided so much comfort.

Just shy of one full week after being admitted, I was discharged from hospital and allowed to finish the antibiotic regimen orally. And since returning home, things have progressed incredibly well. Though I did return to emerge a few days post-discharge for hydration help, I only had to do so once before the infection finally waned enough for the inflammation in the gut to subside.

It goes without saying that the weight has suffered. Three weeks ago I was just under that 100-pound mark (99.4). Today I am 92.4. An unwelcome and frustrating setback, yes, but one that was beyond my control. What’s important is that the gut is absorbing (as best it can) once more, and my intake is nearly back to where it was before this little episode.

 It’ll be another week at least before I venture back to the gym to continue the physical recovery, as I need to regain my full lung capacity, energy reserves, and the ability to take in an adequate caloric surplus to ensure the weight moves in the right direction. But the losses have stopped, the number on the scale has remained stable for three days now, which means the gut is working and ready to move ahead.

—————

The final of three, pre-treatment appointments with my oral/dental team was set for February 25, but due to the, um, ‘detour’ detailed above, I had to reschedule. That appointment’s date is yet to be determined, but I should receive confirmation of a date by Wednesday, the appointment expected to happen sometime within the next two weeks (when all team members are available), with treatment beginning soon thereafter.

In the meantime, I’d like to touch on something I’d opted not to go into detail about, as it’s not my intention to mix the emotional with the medical, especially when it comes to asking for financial help. I am not interested in playing on emotion, do not want to garner sympathy-donations. I know Project Smile could be funded in a matter of days with excessive/viral media coverage or dramatic woe-is-me blogposts or YouTube videos, but I simply refuse to engage in that sort of, for lack of a better term, marketing.

If people are interested in, and able to, offer financial support: wonderful. But I’d rather fall well-short of my funding goal with donations given out of a genuine desire to help, than surpass that $100K mark through manipulative means.

That being said, I feel it’s important for you – those who’ve donated, advocated, or sent messages of support/encouragement – to know just how profound an effect you’ve had:

My medical journey, one which has now stretched beyond a decade, has been a lonely one. Not that I’ve been without support: I have an incredible, close-knit network of family and friends who are always, always there if/when need be, not to mention a medical team who are second-to-none.

But it has been a struggle to find my place; feel a true sense of belonging.

 The long, solitary nights, largely isolated days, tend to wear on any sense of connection. One can’t help but feel largely alone, generally insignificant; existing without purpose, contributing nothing of merit.

This is one area I choose to endure quietly, some days/nights are less heavy than others, but in the weeks before I launched Project Smile, I’d all but abandoned any sense of worth. My heart was heavy, confidence non-existent, and I felt completely lost; at sea without a compass, drifting from one day to the next.

This wasn’t depression, but simply a sense of loss of direction; loss of belief in the post-recovery future.

And then, you changed everything.

I launched Project Smile with little hope, and even fewer expectations. I thought, perhaps, I’d receive support from friends and family back home, and maybe even donations from my lovely little network here in Calgary.

I could never have imagined the outpouring of support that followed: the incredible generosity and advocacy from people I’ve long admired, people whom I so feared would think less of me for asking for help.

The donations, messages, and e-mails I’ve received from names I’d never expect to see attached to such generosity, kind words, friendship, and love — my heart was lifted out of the darkness.

“I don’t think you know how many are behind you,” was a common theme among the messages.

I didn’t know.

Honestly,  I had no idea.

I did not know.

But knowing I belong, that I’m valued, by some of those I respect the most – that means everything.

Everything.

Though the events surrounding, and the ultimate falling-though of, the dental/oral treatment’s funding, the agonizing decision to go public and launch the GoFundMe, allowing myself to be seen still-unwell, has taken quite a toll emotionally, the support I’ve received, the generosity that continues to pour in, has emerged as the unexpected light at this tunnel’s end.

Even if, after this post, no further contributions are made to Project Smile, what my heart has gained – what you’ve given me – is something no amount of funding could ever secure.

You’ve helped in ways far beyond words’ ability to describe.

Thank you, thank you, thank you.

You changed everything.

xo

www.gofundme.com/apsmile

Operation Smile

There are aspects of my medical story, my life, that I’ve touched on only briefly; things mentioned or referenced without a great amount of detail, not because I’m unwilling to discuss, but because further elaboration would require, and warrant, a stand-alone exploration.

This has allowed for a careful, meticulous chronicling of the latter portion of my medical journey, providing the opportunity to introduce and expand on the non-intestinal aspects only if/when necessary. And, as was the case when endocrinology intersected with the gut, if it weren’t for this devastating blindside, the dental/oral aspect would have remained but a footnote.

Had the planned means of financing this crucial, final treatment not collapsed, the cost to me would never have been discussed, nor would I have reached out for help. It would have been a burden, yes, but a manageable one, as it would allow for a thorough, completed treatment, ensuring a definite, unqualified recovery.

Further, if not for Project Smile, I would not be appearing publicly before the recovery is complete; would not allow myself to be seen before all weight was regained, hair regrown; not until the still-healing-gut triggered bouts of eczema over my face and body were longer a recurring nuisance.

I’d planned to keep my appearances limited, movements restricted to appointments, the gym, and the dog park, until I was again as healthy on the outside as I finally am on the inside.

This approach, however, is no longer an option, and as difficult as it is, I know for Project Smile to succeed, I must put myself out there before I’m ready – before I’m healthy – and trust people will forgive my current, temporary (and rather unattractive) appearance; will understand I can look unwell without being unwell, and will continue to see me as I am, as I’ll be once again, instead of forever pegging me at this current stage of recovery.

I’ve been through this before, as the images I’m about to share will illustrate. I will rebuild again, will fully recover, but it’s a very slow process. And though I hadn’t planned to make these images public (though a few I’ve shared before), I feel it’s important to do so, if only to allow for a greater understanding of what I’ve been through, what I’ve overcome, and help serve as a point of reference through the rest of the rebuild/recovery.

 

My medical  journey – A visual timeline: (descriptions appear quite small, but are found at the bottom of each photo)

2000

Year: 2000

2001

Year: 2001

2001

Year: 2001

2002

Year: 2002

2002

Year: 2002 – a friend and I at a fancy event.

2003/2004 (illness clearly ravaging the body, final gymnastic appearance)

Year: 2003/2004 – Intestinal illness onset and, being untreated, clearly ravaging the body. I believe this was my final  final gymnastic appearance.

2004/2005 - 58 pounds - state of emaciation after being refused medical help in Ontario.

Year: 2004/2005 – 58 pounds, state of emaciation as the stigma of a past eating disorder (suffered when I was a  child, even before my gymnastic years) led to a refusal of medical help, the assumption I had merely relapsed, scoffing at the idea of anything medically wrong. This is how many back in Ontario saw me last, and they rightly thought it would be the last they saw of me.

AFter move to Calgary (2005) and proper medical diagnosis, beginning of treatments (first 2 of 5 intestinal surgeries in 2005 + 2006, GI rehabilitation to restore function of the small intestine and subsequent rebuilding/recovery), my sisters and I reunite in 2010 after 5 years apart. The last state they saw me in  is seen in the previous picture.

Year: 2010 – After the move to Calgary (2005) and proper medical diagnosis, beginning of treatments (first 2 of 5 intestinal surgeries in ’05/06 and ’06/07), after the successful GI rehabilitation to restore function of the small intestine and subsequent rebuilding/recovery, my sisters and I reunite  after 5 years apart. They thought the next they’d see of me would be in a casket.

2010

Year: 2010 – Same reunion, a wonderful day.

2011, first real foray out after regaining intestinal function, regaining all the weight lost and regaining health/fitness. At the Underwear Affair, ran the 10k and won Best Superhero for my Captain Awes(t)ome(y) -- revealing my ileostomy.

Year: 2011 – My first real foray out after regaining intestinal function and all weight + fitness I’d lost. The Underwear Affair (raising funds for cancers below the waist), I ran the 10k and won Best Superhero for my Captain Awes(t)ome(y) costume. Here I’m revealing my ileostomy, and telling my backstory/reason for running (father and maternal aunt both died of colon cancer)

2012

Year: 2012. Brio and I. *This* is me.

February 2013 snowshoeing at Troll Falls, this picture taken just months before the first fateful surgery in May.

Year: February 2013, snowshoeing at Troll Falls. This picture was taken just months before that fateful surgery in May, which would set off the series of unfortunate events leading to where I am today. Weight: 130 solid pounds. Fitness: back to elite-level training. Life: awesome.

May 2013, after the first surgery, dealing with some seemingly minor post-op struggles.. Discharged (and readmitted that same day) shortly after this picture.

Date: May 2013, after what was to be the single, final surgery (total proctocolectomy, small bowel resection, stoma revision), dealing with some seemingly minor post-op struggles. I was discharged (and readmitted that same day) shortly after this picture was taken.

May 2013 surgery (this main incision would be cut through 3 times in total)

Date: May 2013 – this is what the intestinal surgeries look like. (This main incision would be cut through 3 times in total)

June 2013 - after having been readmitted with an assumed ileus (normal post-op complication) exploratory scope perforated bowel (because it wasn't an ileus - it was a twisted off and now dead piece of small intestine), waiting for emergency surgery. Body swollen with edema as organs begin to shut down.

Date: June 2013 – After having been readmitted with an assumed ileus (normal post-op complication), an exploratory scope perforated the bowel (because it wasn’t an ileus – it was a twisted and now dead piece of small intestine); Waiting for emergency surgery, face/body swollen with edema as the organs begin to shut down.

June 2013, post emergency surgery (small bowel resection and removal of the ischemic bowel) fill of edema, on TPN (IV feed directly into my heart), all lines maxed out, recieving one of three blood transfusions.

Date: June 2013 – post emergency surgery (small bowel resection and removal of the ischemic/dead bowel), full of fluid/edema; on TPN (IV feed directly into my heart), PCA (morphine) pump; IV lines maxed out; receiving one of three blood transfusions.

Date: June 2013, same as above.

Date: June 2013, same as above.

June/July 2013 - rebound begins, organs start to function, body purges the excess fluid (daily weight loss in Kilos tracked)

Date: June/July 2013 – The rebound begins, organs start to function, body purges the excess fluid/edema, as the daily weight loss (in kilos) shows.

Jan 2014 - after long summer of  working hard on recovery post discharge in July 2013, physical gains beginning to show. Shortly after this picture my intestine would prolapse again, leading to the third (and final) surgery in late February 2014, more small bowel removed, new ostomy created and anchored, but all gains made in weight and fitness lost once again.

Date: Jan 2014 – After 6 months of working hard on recovery post discharge in July 2013, physical gains beginning to show. Shortly after this picture was taken, my intestine would prolapse again, leading to the third (and final) surgery in late-February 2014, where more small bowel would be removed. All the gains I had made would be lost once again — and more.

May 2014 - massive post-operative Post-op obstruction. Situation was critical, as the blood pressure shows.

Date: May 2014 – In hospital for a massive post-operative obstruction. The situation was critical, as the blood pressure shows.

May 2014 - After all was said and done,  my lowest point of 85 pounds as the intestine struggled to recover from so much trauma in such a short span.

Date: May 2014 – After all was said and done, after 3 intestinal surgeries in under a year plus the final, massive obstruction, my weight finally hit bottom – 85 pounds – as the intestine struggled to recover from so much trauma in such a short span.

May/June 2014 - 85 pounds, the starting point of the rebuild.

Date: May/June 2014 – At 85 pounds, my starting point of the rebuild.

October 2014 - 95 pounds and getting stronger by the day.

Date: October 2014 – Picture taken by a dear friend for her 90-days-of-fitness project; Weight at at 95 pounds, muscle and strength gaining by the day.

 

I’m not going to upload a current selfie; I can’t bring myself to take one (I even refused to Skype with my family this Christmas). To see me as I am today, where I’m at as the recovery continues – weight just shy of 100 pounds now, still another 20-30 to gain – watch for the interviews. I’ll update this post and link to my appearances as soon as they’re made available.

I’ll write more later, as I have so much to say about Project Smile and the overwhelming response, but at this moment, I’m spent.

Direct link to my donation page, for those who are interested in/able to contribute: http://www.gofundme.com/apsmile

Update: The only thing worse than this stage of recovery is being seen in this stage of recovery. Unfortunately, the CBC report was rather inaccurate/inadequate, and there is a lack of clarity regarding the causes of, and treatments required for, this situation, due to the complicated medical history and overlapping medical issues discussed throughout the interview, so I’ve updated the Project Smile page with a more-comprehensive/thorough overview.

Thirty

The line separating routine from monotony is a fine one; it’s often difficult, if not impossible, to determine when one has crossed from one state of being to the next.

But distinguishing between the two, in terms of experience, is hardly a challenge.

Routine, though at times monotonous, carries with it a sense of purpose. There is an end toward which one works: a goal to be reached, a task completed, a project furthered.

Even if met with failure at day’s end, experience is gained. Lessons learned.

Monotony, on the other hand, is the worst kind of tedium. It’s an empty, pointless, going-though of motions. There are no points of reference; no beginning or end. Nothing is achieved because there is nothing to be achieved.

Even if all else is equal – a single point on a map marking both beginning and end – routine takes you out on the trails, into the mountains, and through the countryside before you return to the start.

Monotony is a hamster-wheel, where perpetual motion fills the void, but there’s no substance. It’s a shared beginning-end point devoid of experience through the in-between; nothing is lived, nothing learned.

Monumental effort is required to successfully straddle the two – routine and monotony – and it’s an even greater challenge to maintain balance once you’ve steadied the tightrope.

It’s a line which can be traversed so long as outward conditions remain calm. But when the wind begins to blow and that rope begins to sway, you’re caught — forced to crouch down, keep still, until the conditions pass.

You’re naked to the elements, left with no option but to ride out the storm.

So you wait, and you wait.

And you wait.

But the storm doesn’t pass.

You’re no longer working to balance between routine and monotony — you’re desperately fighting a plunge into the abyss of despair.

After having marked the first anniversary of the initial, planned surgery in May, I tipped my hat to the one-year date of the second, emergency surgery in June.

Things had finally begun to rebound from the massive obstruction which hit in April following February’s third, and final, intestinal surgery, and there seemed to be just enough predictability to allow for a steady routine: a clear, daily regimen to guide my recovery through the summer months and into autumn’s planned medical assessment/adjustments.

As I settled into the rhythm, the physical progress marched right along. The predictability, as always, proved a double-edged sword: It removed the guess work from the equation, allowing me peace of mind that I’d done what was asked of me, what was required to keep the recovery moving forward.

With familiarity, however, eventually comes boredom, and soon the advantage of thwarting the end-of-day anxiety was lost to a new, and growing, steady-state of unrest.

With each day came fresh agitation, increased irritation, diminished ambition, absence of purpose.

Routine was supplanted by monotony, and old foes were only too-eager to fill the void.

The world was no longer in clear view, but walled-off by a weathered sheet of glass. And rather than focusing on the world beyond the pane, I became fixated on the inner side of the glass, focus drifting from one imperfection to the next – from streak to spot, spot to streak – brain unable to shift from looking at to looking through.

This is OCD.

It’s what OCD, at least in my experience, feels like, and when those thought patterns began I immediately recognized its resurgence; the introspection-to-the-extreme a symptom/sensation impossible to miss.

OCD isn’t all repetitive behaviors, irrational phobias, number fixations, etc., though those are common symptoms/presentations. OCD is a brain that cannot shift gears; one stuck in neutral as the gas is floored, engine is revved to the max.

The reason I insisted on having clear guidelines in all aspects of the recovery was to prevent the creep of OCD; to ward off the merciless cycle of over-analysis and subsequent agonizing and second-guessing; to not allow for a state of paralyzing indecision to develop.

But when the brain is stuck in OCD thought processes, even a black-and-white plan provides little comfort. The mind races with alternate scenarios, taunting with various “could have”, “should have,” and “would have” scenarios.

During training, for instance, after completing the row: “Well, you could have worked harder — you’re not exhausted. You’re clearly stronger and able to step it up. Yes, you need to keep the daily distance in check to make sure you’re not burning through too many calories, but if you’re physically able to do more, then you should. You’d be pumping out so many more miles if you weren’t adhering to the plan, after all. So maybe you should stray. Maybe you’re holding yourself back. Maybe you’re making excuses. You’re delaying the recovery.”

Or, after a meal: “You could have eaten more at this sitting. If you weren’t following the plan, maybe you would have, and your weight would be better. You’re hindering the recovery.”

Alternately: “You should have stopped 10 bites ago. The gut is clearly uncomfortable — normal people wouldn’t have polished of every last morsel. I’ll bet you’re going to wake up tomorrow with an obstruction. You’ll need more surgery, will lose more intestine. All because you made yourself stick to the plan. You’ve ruined everything.”

As my doctors repeatedly note, therapy, in the traditional sense, has nothing more to offer, and has, in fact, acted as more of a hinderance.

I have a firm grasp on my mental/emotional struggles, as I have for years, and I have the ability to fully recognize and differentiate between, say, OCD thoughts and rational thinking; between a normal low period and a return of depression; between regular stress and anxiety/panic.

I know my triggers, and work hard to avoid them. Though at times anything can, for absolutely no reason, trigger panic, I’ve mastered ways to intervene at the onset,  redirect the thoughts, and somewhat soften the blow.

Reciting song lyrics aloud, and concentrating on the sound of my voice speaking/singing them, for instance, can sometimes shift attention just enough to ward off a prolonged episode of panic.

So, while not acting on the OCD-driven “could’s” and “should’s”, the brain was undeniably stuck.

I refocused, I analyzed, I made the conscious choice to ignore the compulsions — I stuck to the plan.

But the incessant noise in my mind was wearing me down.

Enter the dark: Depression.

The inability to concentrate; being overwhelmed by simple, daily tasks, or, often, just by the mere thought of them. Productivity is non-existent, as is the ability to get anything accomplished. An already shaky self-esteem completely disappears, as does all meaning.

When not consumed by the steady-state anxiety, when not working to suppress an inexplicable rage or trying to ward-off panic, there was a heavy, empty nothingness.

I wasn’t suicidal, but the mere state of being alive was no longer worth the unrelenting anguish.

I didn’t want to die, but hell — I did not want to be alive.

I met with my GP, the man who oversees my entire team, and we chatted about what was happening. I explained to him that, save for the now daily, sometimes multiple, panic attacks about death, dying, and the absolute fear that, for whatever reason, I’m at imminent risk of death just as I was last summer, I was in control of my actions.

But the brain would not stop; the alarm bells constantly rung. The shower panic-attacks returned, as did the nightmares replaying the worst days in hospital, which were now moving beyond what was experienced, ending in new, even more-disastrous outcomes.

I wondered if, perhaps, a medication change would help.

I’d been on a fair dose of SSRIs from the onset of my emotional struggles at age 11, and continued with them ever since. After years of being mentally/emotionally healthy, though, I had wondered if the SSRI continuation was necessary. But there was never any catalyst, no reason to begin weaning off.

I felt good, normal. So why fix what wasn’t broken?

For surgery, however, to minimize potential interactions, and to make it easier to rule out causes should something go wrong, all medications must be stopped. So, after far too many months in hospital last year, I’d unintentionally gone cold-turkey; the complete SSRI cessation a necessary, but unexpected, occurrence.

Given the terrible physical state I was in at discharge, in addition to dealing with all-too-fresh trauma, it would be impossible to gage whether I did, indeed, still benefit from medication.

Only time would tell, as the physical health and overall state of nutrition improved, as the acuteness of the trauma waned, if I’d return to the emotional/mental state of health I enjoyed up to the first surgery.

I suspected that what was happening now – the nightmares, chronic anxiety, anger, panic, despite all else going well – was a clear indication that, yes, my brain is one which functions best with medication.

I’d already restarted SSRIs, but at the very base dose – 1/5 of what I took prior to surgery, increasing to 2/5 soon after – so it was a simple matter of again adjusting the dosage. In doing so, however, I couldn’t help but feel I’d failed.

If only I’d fought the thoughts harder. Maybe I’d allowed the OCD, depression, anxiety/panic to creep in. Maybe I should just keep pressing on, keep riding the storm out, and things will right themselves.

Thoughts to which my doctor replied: “If you were diabetic, would you insist on going without insulin because simply ‘trying harder’ would somehow force the pancreas to function? These medications exist for a reason. It’s OK to allow them to play a role in your life-long emotional management and mental wellness. If they allow you to be you, why would you feel the need to go without?”

Why indeed.

Aside from the medication change, we decided to address the not-responsive-to-therapy strategy which allowed me to conquer the eating disorder nearly 20 years ago.

It wasn’t through therapy, nor the work of psychologists, that provided me with the tools needed to fully recover. It was my dietician – an incredible woman to whom I remain close – who facilitated the recovery. Only she could provide the peace of mind needed when irrational thoughts arose. She taught me about nutrition, providing detailed insight into the various body systems and how they functioned.

Remember: I was just a child. I hadn’t a clue about how the body worked. I had only fear.

When I completed the in-patient program where she was available around-the-clock for support, she remained a quick phone call away, direct to her personal number.

I trusted her the same way I trust my current medical team. And, as was the case with my dietician, it’s only my medical team who can provide the reassurance, information, and black-and-white answers needed to work through the post-traumatic stress, the anxiety and panic.

Only they possess the answers to the specific concerns regarding my recovery. And it’s only through their personal guidance and reassurance that I’m afforded any sense of relief.

So, a sort of informal “just to chat” appointment was proposed, to occur on an as-needed basis — be it weekly, monthly, or even daily if necessary. An hour to simply talk, review how things are going, ask questions, and address concerns; to chart progress, make adjustments.

To provide absolute, authoritative answers — the only antidote to the panic; only way to mitigate the anxiety, temper the fear.

As the summer wore on, this two-pronged approach proved incredibly effective.

Upping my SSRIs to 4/5 of my longtime, normal dose was a wise decision. Almost immediately I felt the difference: that edge was taken off. As the weeks passed, the permanent state of agitation began to ease, the irritation faded, tension waned, and episodes of panic decreased significantly.

The thousand-pound vest of turmoil I was suffocating under had finally been removed.

I could breathe.

The mind became quiet once more — the noise had stopped. When I say ‘noise’ I don’t mean literal noise – real or hallucinated – or anything audible at all. It’s difficult to explain, but imagine being in a room filled with televisions and radios, all pouring out static at full volume.

That’s what it feels like, the ‘noisy’ brain; a mind that refuses to be ‘quieted.’

It feels like static sounds.

And now imagine, after being stuck in that room for months, the static suddenly stops.

The TVs go dark, radios mute.

Silence. Glorious silence.

That’s the ‘quiet’ mind.

My focus began to shift, too: first, from the inner-side of that pane to the world beyond, and in recent weeks, the glass barrier has been altogether removed. I’m seeing, living, things once again as they are.

The brain is no longer stuck in neutral; mind no longer in state of paralysis.

The ‘just-to-chat’ appointments, indeed proved far more successful than any standard therapy in working through the trauma, alleviating the anxiety, and controlling the panic.

Over the course of a few months, I’ve made more gains in the emotional recovery than I had throughout the previous year-plus.

Though I’m not 100% just yet, I feel the closest to ‘normal’ — that pre-surgery state of mental/emotional well-being — than I have since, well, since before being admitted for surgery.

And I now have full confidence that I can – I will, in fact – fully regain my normal state of being.

As things began to turn for the better on the mental/emotional side, however, a new, potentially devastating medical situation arose.

It started off small, a light swelling under my chin and down into my neck, which I initially brushed off as swelling from a dental abscess for which I’d just been prescribed antibiotics.

But as the course of antibiotics ended and the dental pain subsided, the swelling only increased, eventually growing into a sizable lump — an obvious cause for concern.

Given the number of times I’ve been exposed to radiation – X-rays, MRIs, CTs, etc: Nearly 40 instances in the past year alone – there is an ever-increased risk of cancer.

I won’t drag this out: A series of diagnostic tests confirmed that the lump was NOT a tumor, nor was it cancerous. It was a massive, benign cyst, caused by an underlying issue; further fallout from the intestinal fiasco, but an area which hadn’t been addressed.

Something I’d yet to write about here, opting to do so only if/when necessary. Clearly that time has come, as the issue cannot be put aside any longer and the fix is set to begin shortly.

In sum: When my small gut was not functioning (before the intestinal rehab) I required some standard dental work. Due to my extreme state of malnourishment, however, what should have been run-of-the-mill became an ordeal, complete with recurring infection, disappearing enamel, and ultimately, compromised bone. Unlike the other consequences of a body’s starvation – hair loss, for instance: hair grows back when nutritional status normalizes – teeth don’t recover.

Dental issues will not right themselves.

To make matters worse, the dentist tapped to deal with the ever-deteriorating bone over-sold his ability to adequately and fully perform what was required, and after his questionable work, things were left worse than where they started.

After my medical team became involved, I was put in contact with the specialists qualified to deal with the matter. I’d planned to have an oral surgery consult shortly after the first surgery in May, but, well, things didn’t exactly go as planned, as you know.

The fight-for-life that ensued only invited further infection; extreme weight-loss/lack of nutrition caused further bone deterioration.

Even if I wanted to jump into the oral surgery immediately following discharge, I couldn’t, as the healing ability wasn’t there.

I’d only be asking for trouble.

With the recovery now in full swing, the gut function improving daily, state of nutrition normalizing and weight slowly, but steadily, climbing, my ability to heal from the now fairly major oral surgeries required isn’t a concern.

The cyst was caused by this oral/dental situation, a sign that treatment cannot be put off any longer.

Over the course of about 6-8 months, depending on how well healing occurs, I’ll have a series of bone and tissue grafts, and single-tooth implants where any teeth are compromised. It’s not going to be a pleasant experience, but it will prevent any future bone/palate deterioration and ensure my smile – one of the few things I like about myself – is something I can count on liking well into the future.

Which makes me very, very happy.

This oral issue has been one of two loose-ends to be tied medically, and knowing it will be properly, permanently fixed – finally – is such a relief. The discomfort of the procedures will be well-worth it in the end, and really — there’s no better time than now, while I’m already limited to a pureed intake, already restricted in my movements, to get it done.

The second, and final, yet-to-be-fully-addressed medical situation deals with endocrinology.

As detailed in my last update, the difficult, but wise, decision to halt any further HRT was made. However, just what the long-term strategy entailed was left unanswered.

Of all my medical team, my endocrinologist was always the weakest link. She was smart and capable, but at times seemed uninterested; lacked the leave-no-stone-unturned dedication exhibited by the others; didn’t offer any curiosity to probe beyond what was necessary for an easy answer.

After the HRT decision, my GP tapped a new endocrinologist to the team who’d review my case, overhaul the treatment plan, and oversee any/all endocrine matters from here-on-in.

Going into the first appointment, I wasn’t sure what to expect. So many questions remained after my final meeting with my now-former endocrinologist, and though I trusted my GP to recruit only the best for me, I couldn’t help but worry that, perhaps, I’d leave regretting the endocrine overhaul.

The rest of my medical team – my gastroenterologist, surgeon, GP – are all second-to-none. I’d long wished for an endocrinologist who’d match the others in brilliance, but with the endocrine issues relegated to the sidelines until the intestinal matters were fully taken care of, I opted not to press the issue.

But now, with that decision having been made for me, I dreaded the notion: “Be careful what you wish for.”

We met for nearly three solid hours, my new endocrinologist and I, pouring over my medical history, dissecting each diagnosis, reviewing every test/result.

It quickly became clear that this was indeed the man who’d fully round-out, finally complete, my medical team of excellence.

He explained to me, both in medical terms and non, my various diagnoses, their underlying cause, and the treatment/management options.

And finally – finally – a long-term strategy was presented.

With the thyroid (hypothyroidism) it’s a simple matter of regular blood monitoring and adjusting the dosage as required.

The hyper-pigmentation which developed over the past two years around my cheeks and eyes may or may not resolve as the the hormones are regulated/normalized, so it’s a wait-and-see approach.

The amenorrhea is primary: genetic/familial. Even if I were to continue with the HRT, it would be for naught. My uterus will not function, body will not ever achieve a typical feminine silhouette.

And you know what? Now that I’ve had it explained to me, fully understand the definitive diagnosis, I’m OK with that. What’s important to me, physically, is strength, fitness, and athleticism. It has always defined me, and there are zero limitations – genetically or otherwise – to what I can achieve.

So what, then, is the long-term treatment/management strategy?

Estrogen is important for many reasons, not the least of which is bone (and dental) health. And because my body cannot produce even the minimum required for non-reproductive functions, I will require a low-dose replacement for life.

**Detailed female medical details below, skip if desired**

But there’s no need to force a bleed just for the sake of it, so after purging the uterus of any accumulated lining, a daily base-dose of progesterone will be added to prevent any future build-up (and subsequent forced periods) while allowing for the ongoing estrogen delivery.

**If skipped, safe to resume reading.**

And just like that, the final piece of the puzzle fell into place.

The appointment concluded, I made my way to the car, sat in the parking lot, and cried. Tears of relief poured out, and with them drained all the doubts about the future, making room for a long-sought sense of closure.

No more loose ends; nothing else yet-to-be-addressed.

Finally, everything, every aspect, is being followed and taken care of.

My endocrinologist and I meet again mid-October, at which time I’ll either begin the forever course of treatment, or do another, more aggressive round of preparatory treatment (chemical D&C), delaying the official treatment’s commencement by just a few weeks.

Though everything discussed, all the developments detailed above, have been quite recent, the past two weeks in particular have been incredibly positive, and on October 2  I marked my 30th birthday with a sharpened focus, return of purpose, renewed confidence, and strengthened resolve.

I can do this. I will do this.

Yes, I still have a fair chunk of road to cover before the recovery is complete, but a definite shift has occurred. I’ve broken through the wall, found my second wind, and am once again pressing toward the finish at a steady pace.

Rather than idling to fight the elements, I’m taking them as they come without loss of momentum.

Not only will I complete this marathon, but I’ll finish strong, undaunted by the series of detours and hurdles thrust upon me as I navigate the course.

To all who’ve stood along the barriers to cheer me on, who’ve waited patiently at various distance markers, paying no mind to the time it took me to arrive, to offer words of encouragement, or sometimes, just to stand silently, offering a knowing nod of solidarity and unending support: I cannot thank-you enough.

It’s through those brief, seemingly unremarkable interactions that I gather the will to continue down the long, solitary portions of road.

As I continue down this final stretch, the marathon’s conclusion inching closer by the day, I take comfort in knowing know you’ll be there to greet me at the end, ready to celebrate the conclusion of this long, arduous journey, and step with me into the fresh, post-recovery chapter of life.

What a celebration it will be.

See you at the finish.

xo.

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.

Home (again!)

It wasn’t like last time.

Not even close.

This surgery, and the post-opertaive experience thus far, has been anything but the nightmare experienced back in May/June. That’s not to say that things are terrific — this was the third, fairly major intestinal surgery in under a year — but what a difference from the previous two outings.

The ‘going-under’ part was admittedly more difficult this time around: Perhaps I was hyper-aware, or maybe the memories of May/June were more present than I’d allowed myself to recognize, but the icy, pre-surgical antibiotic burned through the veins with a greater intensity than I recall it having done before. The first, failed attempt to secure the line felt as if the anaesthetist was strumming my nerve like a guitar, and even though the second vein was co-operatvive, the pain didn’t subside, and the antibiotic only irritated matters.

As the sedative crept its way through the vein, I didn’t drift off quite so easily. My ears rang with an intense, unrelenting whir. I waited for my vision to blur, but it refused, and so the whirring only grew more potent, near-overwhelming. The main OR nurse was wonderful, and she held my hand as I inhaled deeply from the mask secured to my face, pumping my lungs with pure oxygen.

I told her I was afraid, but that I didn’t know what I was afraid of.

“Just focus on the breathing,” she whispered. “It’s just the drugs. Everything will be fine.”

When I woke in recovery, I felt pain, but nothing close to the intensity of the previous surgeries. This pain was strong, yes, but not excruciating.

Back in my room, hooked up to the PCA once more, the attending nurse was reluctant to allow the free-use of the Fentanyl (rather than morphine this time), though my surgeon had a no dose limit order, because my respiration rate was low (under 10 breaths per minute), as was my pulse (mid-30s). This made for less-than-optimal pain-control for the first 12-hours post-op, but because I’d experienced far worse, I knew I could manage.

Breathing/heart function was slightly more important than being completely comfortable, I reasoned.

My blood pressure and pulse remained low even after that critical period, however, so I did my best to forgo using the PCA altogether, pressing the button only when things became too intense to manage through other means.

Though a distressing shade of purple, bordering on black, the intestine seemed to react just as well to the surgery as I had; I was able to start drinking and eating soft foods (such as yogurt) within the first 24 hours without much issue.

I was up and walking around, too, and free of any drains, catheters, etc.

Because things were going so well, my surgeon agreed to let me go home much earlier than planned.

“Only because you’re so fit,” remarked the charge nurse, with a smile.

It helps that I’m quite close to the hospital and have a direct route through the ER to the unit should problems arise, and that I’m well attuned to when things ‘aren’t right’, knowing if/when I need to go back.

Plus, I can get far better nutrition while home, and am free of the risk of contracting a hostpital-acquired infection.

“But,” my surgeon cautioned, “you need to act as if you’re in hospital for at least another week. The diet must be advanced slowly and carefully, and nothing but light walking/wandering, activity wise. You can start walking as you normally would in week two, and only in week three can you start, s-l-o-w-l-y, getting back to regular, daily activity.

Then, by the end of March, you should be more-than-ready to resume physical activity, and the recovery as a whole.

But you need to give yourself time.”

I took careful note of his instructions, agreed to follow them as meticulously as ever, and gave him a giant hug.

He smiled, squeezed me back, and told me I was his favourite patient.

And that made my heart sing, because I absolutely adore him.

And so, today I’m home, down 4 pounds since surgery, and will likely lose another few, or couple of few  (hopefully not more), before the intestinal swelling subsides enough to fully absorb what I eat, and before I’m able to take in enough nutrition to reverse the slide.

As I’ve learned, though, it cannot be forced, and I have to be patient. I don’t like the extreme fatigue and weakness that comes with lacking nutrition, nor am I particularly fond of the panic that accompanies this state. But I know it’s temporary, and soon enough, the fatigue-weakness-panic cycle will disappear, just as it did before.

Of course, it all depends on how fast – or not – the intestine rebounds. Things can’t start to get back to normal until intestinal function does, so the one-, two-, three-week guidelines are just that: guidelines.

As was the case before, my immediate focus will be on day-to-day improvements, aiming to end each day stronger, stabler, and healthier than it began; Working to keep the pain/discomfort and nausea in check, and finding ways other than physical activity to alleviate the anxiety caused by, well, inactivity.

There are sure to be hiccups along the way, as there always are, but things are off to a very promising start, and, I think, bode well for the recovery from here on in.

And thanks, as always, for accompanying me as I continue along the journey.

Once More Into The (Surgical) Fray

I could begin by telling you “things weren’t supposed to be this way,” but let’s face it — they rarely are.

In fact, things aren’t supposed to be anything at all: they simply are what they are, will be what they will be, despite one’s best efforts.

Despite the best intentions, a solid foundation, perfect execution, even the most flawless plan can unravel, rather than unfold; Where the carefully aligned pieces fall just out of place, so that what was meant to be an intricate, completed puzzle — pieces tightly woven, interlocked, secured in such a way so that the final image is fit to be sealed and mounted — is instead noticeably flawed; Where a single, mislaid jigsaw skews the entire picture, forcing the players to painstakingly pour over their work, searching for a solution, so they can finally complete the challenge and move on to a new project.

And it pains me to say, but my puzzle is one in need of rejigging.

Rather than detailing each incident at length, belaboring every hurdle, I’ll try to provide an overview of what’s been happening, what will happen now, and where I go from there.

In addition to the removal of half my intestines in May (total proctocolectomy), I had adhesions (internal scar tissue) removed and a stoma revision (the part of my small intestine that is exposed) to fix the prolapse issue — that thing where my guts would snake out of my abdomen.

That ‘fix’ however, was undone as a consequence of the emergency surgery in June. Though to be fair, my surgeon was more concerned at the time with saving my life than  with anchoring/perfecting the intestinal port.

The stoma held up well in the beginning; even with the obstruction in October, the intestine remained firmly in place. By November, however, some instability started to present itself, and December marked the return of the prolapse, and the first of what would be many, increasingly severe, occurrences – sometimes with the intestine refusing to recede (or allow itself to be forced) back into the body for days on end.

(This is exactly what it looks like, by the way. It’s a surgical picture, though, not me. But if you want to see what I am talking about, have at it.)

With each severe prolapse came intestinal trauma, causing what was already suboptimal digestion/absorption to be further restricted until the attack had fully subsided, meaning an average span of 7-10 days of not only decreased caloric intake (due to a regular food intake/volume causing further prolapse), but scarce absorption of what could be ingested.

This has made keeping any weight re-gained since the 30+ pound loss incredibly difficult, and any further gains/complete recovery impossible.

I met with my medical team on February 4, and my surgeon and I discussed the options.

The lesser-invasive scenario — the one we agreed to go with — involves further intestinal resection (removal of more healthy small intestine) to create a new stoma (intestinal port) with careful internal stitching along the abdominal wall to tack the intestine in place. Ideally, this would provide the stability needed to prevent any future prolapse and allow the intestine to function normally.

The downside, of course, is losing more of the increasingly sacred, healthy intestine, which only exacerbates the short-gut syndrome. But if it, indeed, puts an end to the prolapses, then I’ll be able to take in enough extra nutrition without incident to make up for the suboptimal digestion/absorption.

If, however, the intestine prolapses again, the ‘fix’ involves a highly-invasive surgery, where internal scarring is intentionally created to forcibly anchor the intestine into place.

But due to the repeated trauma already inflicted on my gut and my body, my surgeon suggested we try the not-as-invasive option first, as it might be just enough to fully rectify the issue without having to resort to the most extreme procedure.

And that’s the surgery I’m having today.

There is no question that something must be done: every day since that meeting in February has become increasingly difficult, with the past ten days nothing short of excruciating.

If all goes well, it will likely set my overall recovery back about 4-6 months, which is entirely manageable. But because – again, if all goes according to plan – the gut will be given a chance to fully function without impediment, it’s not outside the realm of possibility that the recovery will actually tick up a notch and proceed in a higher gear than before.

But these are just guesses; nothing is guaranteed, and if I’ve learned anything, it’s that  trying to forecast how the gut will behave is a fool’s errand.

All I can do is keep on keeping on, doing everything in my power to tilt the odds in my favour, but accepting that there are things I cannot control, no matter what I do.

And that it’s not my fault – or anyone’s fault – if/when the recovery strays from the planned route.

Detours are a part of life, and you have to take them as they come. If navigated properly, they don’t have to lead you astray; they simply make the journey a little more scenic.

And as I re-evaluate and recalibrate the overall recovery plan, I also have a chance to rework my life-after-recovery forecast.

Prior to May, I’d hoped – perhaps foolishly – that the (what was to be final) surgery would prove the ultimate fix: that I’d be able, upon full recovery, to proceed with life as if the past decade had never happened.

However, I can no longer deny that this scenario will not happen, and perhaps never really stood a chance.

I initially had to shoot for that utopian conclusion, though, or else I’d have felt that I’d held myself, my life, back by ‘not trying hard enough.’ By making excuses. By somehow failing to fulfill my full potential, whatever the ‘potential’ may be.

(Think I’m too hard on/critical of others? You should hear the things I tell/demand of myself.)

What drives me more than anything is athletics: the intensive training regimen, constant competition with previous bests, the feeling of complete, glorious exhaustion after pushing the body beyond what the mind will allow.

It’s where I’m at home, what I’m most confident in doing, and what I love more than anything.

But I know that I no longer have a future in the competitive sphere, as my gut will not allow the predictability and consistency needed to commit to any one pursuit.

What I can do – what I will do –  is continue with what I’ve been doing as of late: training for me. Because it’s how I cope with stress, how I manage the anxiety.

And, for me, it provides that much needed sense of normalcy and routine.

That said, I’ve long searched for something to fill the void, to provide purpose, passion, beyond the physical, and I think I’ve found that in writing.

When not driven to train, I’m eager to write: my mind is constantly composing essays, op-eds, discussions in my head, even if they never make it to ink.

But I must improve the confidence factor; I have to learn to be as aggressive and self-assured on paper as I am in the gym.

That’s something I’ve already begun to work on, and in time, I know writing will feel just as natural an extension of myself as athletics does.

So, after this surgery, as I continue along in the recovery, I’m going to focus on balance: work on finding a happy medium between the training and the writing, and perhaps begin to chart a course for myself, post-recovery, for some sort of future, perhaps a career, spanning the two.

It may not be where I envisioned myself before this all started, but to be honest, I have little  cause to complain about where I’ve ended up; Where I find myself.

I wouldn’t trade the contacts I have, friends I’ve made, for anything. I have the best doctors, the most supportive, understanding network of friends and colleagues, and a family willing to sacrifice anything and everything to see me well.

Things are how they are, not how they’re ‘supposed to be,’ and perhaps there’s good reason for that.

Because how one envisions things should be at one time cannot take into account what may become in the future.

And that unanticipated future could very well be more promising than if things had gone strictly according to plan.