This will be a very long post, but I thought it might be useful to get some of my innermost thoughts out on paper now that it's been almost a year since my husband's surgery. I hope that for those of you who stick it out to the end, that it offers you some comfort or at the very least, entertains you for a while.
Tyler could have been dying for all we knew. For weeks he had been sandwiched in between elderly people with UTI's, epileptics with conduct disorders, and other cases that no matter how unpleasant, seemed more hopeful than him at the local general hospital. My beautiful, strong man seemed so small and weak in that crumpled and sweat stained gown; eyes that couldn't hide their despair and an I.V poked into his arm with a steady supply of prednisone and synthetic nutrients to the point where the tubing may as well have been an extension of his body, some kind of tubular, rubbery apendage. Even after he'd lost 20 pounds in the first two weeks of his colitis flare up, and even when he couldn't breathe deeply without a wave of cramping agony causing his face to flush and his mouth to tighten into a perfectly straight line - we still didn't realize how serious this all was - no. It was only when his trembling innards failed to respond to the usual treatment that we stopped to consider the gravity of the situation. All the treatments which had usually worked so well in the past were suddenly rendered positively useless; prednisone infusions may as well have been saline solutions, and even a very expensive experimental I.V infusion wasn't doing the job this time around.
The love of my life lay before me getting weaker with each passing day. And from the time I got off work to the time when visiting hours were close to being over, I watched him languish before me; what was once a vibrant and bold creature had been diminished by a near constant loss of blood, and the kind of sorrow that comes hand in hand with hopelessness. At that time I would have done anything - spared no expense and no dignity to have him well again and with me at home. I remember a few sleepless nights where I laid in bed and literally begged God to give me some of his pain, so that he might at least find the strength to see a brighter future.
Surgery wasn't something he entered into lightly, and it sure as hell was NOT a choice. If you put eventual death from toxic megacolon to the left, and put an ileostomy to the right - is that really a choice? Life or death - there is no argument to be had. You choose life because that's what humanity does and indeed, that is what you owe yourself. You side with life as the ultimate tribute to what you were before your colon turned on itself and put this nightmare into motion. At that time among our supporters (bless their hearts), we also had our detractors who found it despicable that I, as his closest confidant, could ever agree with him that surgery was the best option. In the state I was in at the time, their words were like little shards of glass smashing against my internal resolve. How could I "allow" him to be cut open and quite literally turned inside out? Were we sure that all our options had been exhausted? Wasn't there something I could say or do to change his mind? I kept hearing the same tired concepts that sounded so reasonable coming from the mouths of perpetually healthy, intact persons: "Oh, but he's so young!" and of course, "Are you aware of the rate of post operative infection in people who have this kind of abdominal surgery?"
They didn't consider that no one took this more seriously than we did. And even more deplorable, among those who weren't supportive there wasn't a single soul who had spent as much time with him as I did, and thus couldn't even begin to imagine what kind of torture he felt in the dead of the night when the cramps were at their worst, and there wasn't a thing that could be done about it short of the administration of narcotic pain killers - which are notoriously bad for the bowels.
So he had the surgery.
Upon opening him up, it was found that he had the worst kind of ulcerative colitis, pancolitis. His entire colon was diseased and would have to be removed, making him the recipient of a colectomy. I still remember vividly the entire process from my far removed perspective; I spoke to him briefly just before they wheeled him into the operating room, barely able to conceal the shakiness in my voice when I told him I loved him and would be there for him when he woke up. The most intense portion of that day came in the evening, when my father and I made our way to the hospital in order to wait for him to be discharged from the recovery room. What a long four hours that was, where all I could to do keep some semblance of sanity was fiddle with an endless array of word puzzles from one of those drug store activity books, and humor a patient who insisted on talking to me about his many trips to Mexico, and how the medical care is supposedly just so much better south of the border. Good grief, surely this was purgatory. Eventually, this limbo did come to an end when I saw Tyler, in a drug induced state of a blissful stupor, wheeled back to his room to convalece after the trauma of the rather extreme surgical procedure he'd just endured. He was awake but not lucid when I spoke to him briefly, leaning over his bed just to relate the good news, "Tyler, the colitis is gone, the operation was a great success, and I love you."
Recovery wasn't easy.
Between waging war with a rather nasty post operative bout with ileus (I nearly died when I saw that awful nasogastric tube pumping acid out of his stomach) and a somewhat anticipated post operative infection (for a good few weeks Tyler literally had a gully formed around his surgical opening to allow pus to flow free),we were stepping on egg shells for a while. But, by the grace of God or maybe just pure luck, slowly but surely that strong and vibrant human being came back to us. Initially after his return from the clutches of colitis and subsequent operation, the best I could do was keep him comfortably propped up in bed while I spoon fed him the tiniest bits of yogurt and other very soft foods. In the time that he was hospitalized, his stomach had shrank considerably in size, and he was understandably weak in general. But his courage and conviction were steadfast, and with each little walk we took from our bedroom to the living room and back, his muscles rebuilt - and his confidence came shortly thereafter. In the space of two months, Tyler was back at work, and it was around that time that I was finally able to breathe again; just relax and take comfort in the fact that the worst was over.
It's now nearly one year later, and while my love for him hasn't changed, my admiration has seemingly grown in leaps and bounds. People sometimes hint at their curiousity as to how we relate to each other now that Tyler is lacking a colon and must rely on an ileostomy in order to elimate his food waste. The reality is, and people always look at me a little funny when I say this, that I simply and truthfully love him more with his bag. Because of that little unsightly flesh colored parcel hanging off his lower abdomen, I have my best friend and life partner back. It's somewhat comical when one stops to realize that so much love is invested in that ostomy bag; because of it, Tyler is as whole as he ever was, in the sense that while he lost an organ, he gained total and full well being. The fact that he has an ileostomy signifies that Tyler is disease free, meaning that his new lease on life is our new chance to continue enjoying each others company, whether it's during a walk on the beach on some redundant Sunday afternoon, or snuggling under the blankets on a frosty winter night.
If you ask me, as the partner of someone with an ileostomy how I personally feel about his "bag", the only honest answer would be one of gratitude. I am thankful - yes - thankful and utterly appreciative of the fact that he no longer has a colon and must eliminate waste through a bright red stoma in his side. I am relieved and overjoyed at the fact that what was once such a source of strife and torment in his life is no more. How can something that has saved him be something that disgusts me or causes me to shy away in squeamishness? Indeed, were I to feel that way, it would probably indicate some instability or at the very least a sore lack of prioritizing capabilities on my part. No way, you will never hear me complain or pity the fact that my partner now lives his life with an ileostomy. Instead you will hear a comfortable laughter when the stoma lets out excess air, and an incredulous "So what?" when someone has the shortsightedness and sheer audacity to dramatically exclaim, "But you're so young!". I won't apologize or emphatically justify Tyler's "decision" to have his colectomy. Why would I? There's no justification or explanation really needed here, except for maybe the fact that life always finds a way, and if that way is by means of an ileostomy - then so be it; celebrate it, throw a "colon bon voyage" party and tell a few jokes about it.
I am so thankful to have Tyler in my life, and like it or not, a small portion of that gratitude is directed at his ileostomy. Thank you for giving me my partner back, and thank you for giving me this opportunity to keep on exploring with him, being silly with him, laughing with him - and loving him. Always loving him, so much.
Tyler could have been dying for all we knew. For weeks he had been sandwiched in between elderly people with UTI's, epileptics with conduct disorders, and other cases that no matter how unpleasant, seemed more hopeful than him at the local general hospital. My beautiful, strong man seemed so small and weak in that crumpled and sweat stained gown; eyes that couldn't hide their despair and an I.V poked into his arm with a steady supply of prednisone and synthetic nutrients to the point where the tubing may as well have been an extension of his body, some kind of tubular, rubbery apendage. Even after he'd lost 20 pounds in the first two weeks of his colitis flare up, and even when he couldn't breathe deeply without a wave of cramping agony causing his face to flush and his mouth to tighten into a perfectly straight line - we still didn't realize how serious this all was - no. It was only when his trembling innards failed to respond to the usual treatment that we stopped to consider the gravity of the situation. All the treatments which had usually worked so well in the past were suddenly rendered positively useless; prednisone infusions may as well have been saline solutions, and even a very expensive experimental I.V infusion wasn't doing the job this time around.
The love of my life lay before me getting weaker with each passing day. And from the time I got off work to the time when visiting hours were close to being over, I watched him languish before me; what was once a vibrant and bold creature had been diminished by a near constant loss of blood, and the kind of sorrow that comes hand in hand with hopelessness. At that time I would have done anything - spared no expense and no dignity to have him well again and with me at home. I remember a few sleepless nights where I laid in bed and literally begged God to give me some of his pain, so that he might at least find the strength to see a brighter future.
Surgery wasn't something he entered into lightly, and it sure as hell was NOT a choice. If you put eventual death from toxic megacolon to the left, and put an ileostomy to the right - is that really a choice? Life or death - there is no argument to be had. You choose life because that's what humanity does and indeed, that is what you owe yourself. You side with life as the ultimate tribute to what you were before your colon turned on itself and put this nightmare into motion. At that time among our supporters (bless their hearts), we also had our detractors who found it despicable that I, as his closest confidant, could ever agree with him that surgery was the best option. In the state I was in at the time, their words were like little shards of glass smashing against my internal resolve. How could I "allow" him to be cut open and quite literally turned inside out? Were we sure that all our options had been exhausted? Wasn't there something I could say or do to change his mind? I kept hearing the same tired concepts that sounded so reasonable coming from the mouths of perpetually healthy, intact persons: "Oh, but he's so young!" and of course, "Are you aware of the rate of post operative infection in people who have this kind of abdominal surgery?"
They didn't consider that no one took this more seriously than we did. And even more deplorable, among those who weren't supportive there wasn't a single soul who had spent as much time with him as I did, and thus couldn't even begin to imagine what kind of torture he felt in the dead of the night when the cramps were at their worst, and there wasn't a thing that could be done about it short of the administration of narcotic pain killers - which are notoriously bad for the bowels.
So he had the surgery.
Upon opening him up, it was found that he had the worst kind of ulcerative colitis, pancolitis. His entire colon was diseased and would have to be removed, making him the recipient of a colectomy. I still remember vividly the entire process from my far removed perspective; I spoke to him briefly just before they wheeled him into the operating room, barely able to conceal the shakiness in my voice when I told him I loved him and would be there for him when he woke up. The most intense portion of that day came in the evening, when my father and I made our way to the hospital in order to wait for him to be discharged from the recovery room. What a long four hours that was, where all I could to do keep some semblance of sanity was fiddle with an endless array of word puzzles from one of those drug store activity books, and humor a patient who insisted on talking to me about his many trips to Mexico, and how the medical care is supposedly just so much better south of the border. Good grief, surely this was purgatory. Eventually, this limbo did come to an end when I saw Tyler, in a drug induced state of a blissful stupor, wheeled back to his room to convalece after the trauma of the rather extreme surgical procedure he'd just endured. He was awake but not lucid when I spoke to him briefly, leaning over his bed just to relate the good news, "Tyler, the colitis is gone, the operation was a great success, and I love you."
Recovery wasn't easy.
Between waging war with a rather nasty post operative bout with ileus (I nearly died when I saw that awful nasogastric tube pumping acid out of his stomach) and a somewhat anticipated post operative infection (for a good few weeks Tyler literally had a gully formed around his surgical opening to allow pus to flow free),we were stepping on egg shells for a while. But, by the grace of God or maybe just pure luck, slowly but surely that strong and vibrant human being came back to us. Initially after his return from the clutches of colitis and subsequent operation, the best I could do was keep him comfortably propped up in bed while I spoon fed him the tiniest bits of yogurt and other very soft foods. In the time that he was hospitalized, his stomach had shrank considerably in size, and he was understandably weak in general. But his courage and conviction were steadfast, and with each little walk we took from our bedroom to the living room and back, his muscles rebuilt - and his confidence came shortly thereafter. In the space of two months, Tyler was back at work, and it was around that time that I was finally able to breathe again; just relax and take comfort in the fact that the worst was over.
It's now nearly one year later, and while my love for him hasn't changed, my admiration has seemingly grown in leaps and bounds. People sometimes hint at their curiousity as to how we relate to each other now that Tyler is lacking a colon and must rely on an ileostomy in order to elimate his food waste. The reality is, and people always look at me a little funny when I say this, that I simply and truthfully love him more with his bag. Because of that little unsightly flesh colored parcel hanging off his lower abdomen, I have my best friend and life partner back. It's somewhat comical when one stops to realize that so much love is invested in that ostomy bag; because of it, Tyler is as whole as he ever was, in the sense that while he lost an organ, he gained total and full well being. The fact that he has an ileostomy signifies that Tyler is disease free, meaning that his new lease on life is our new chance to continue enjoying each others company, whether it's during a walk on the beach on some redundant Sunday afternoon, or snuggling under the blankets on a frosty winter night.
If you ask me, as the partner of someone with an ileostomy how I personally feel about his "bag", the only honest answer would be one of gratitude. I am thankful - yes - thankful and utterly appreciative of the fact that he no longer has a colon and must eliminate waste through a bright red stoma in his side. I am relieved and overjoyed at the fact that what was once such a source of strife and torment in his life is no more. How can something that has saved him be something that disgusts me or causes me to shy away in squeamishness? Indeed, were I to feel that way, it would probably indicate some instability or at the very least a sore lack of prioritizing capabilities on my part. No way, you will never hear me complain or pity the fact that my partner now lives his life with an ileostomy. Instead you will hear a comfortable laughter when the stoma lets out excess air, and an incredulous "So what?" when someone has the shortsightedness and sheer audacity to dramatically exclaim, "But you're so young!". I won't apologize or emphatically justify Tyler's "decision" to have his colectomy. Why would I? There's no justification or explanation really needed here, except for maybe the fact that life always finds a way, and if that way is by means of an ileostomy - then so be it; celebrate it, throw a "colon bon voyage" party and tell a few jokes about it.
I am so thankful to have Tyler in my life, and like it or not, a small portion of that gratitude is directed at his ileostomy. Thank you for giving me my partner back, and thank you for giving me this opportunity to keep on exploring with him, being silly with him, laughing with him - and loving him. Always loving him, so much.
