I’ve had UC, theoretically speaking, since I was 4 years old, I was finally diagnosed with it after spending months in and out of the hospital (mostly in), countless drug cocktails orally and intravenously to the point where my veins all collapsed (not so much fun), ridiculous procedures that did nothing but almost kill me (wickedly painful) and made me feel violated, and three Last Rite rituals. This was all before I had reached the ripe old age of 10. In retrospect, I guess I credit my grandmother for coming up with ways to make the priest’s visits a little less scary and traumatic and more like a game but I knew. I always knew. YOU try and explain to a curious 5 or 6 year old why the priest is chanting and wearing a funny costume in a way that doesn’t completely scare the hell out of her? This is all ridiculously scary when you’re just a little kid and you’re precocious enough to know that you’re being spectacularly bull-shitted by your well-meaning grandma and the priest is not, in fact, simply praying and wanting to play.
In any event, my story is very sad in that it starts with my mother and her unwillingness to tell people, specifically my father or grandparents that I was sick. My mom couldn’t hang. I guess I can’t blame her. I realize now that at the time she was newly divorced and that she has/had emotional and psychological problems that have in later years turned into early onset Alzheimer’s but I digress and that whole story is far better suited to another forum. The point of this is that I have never had a relationship with my mother and never well, and although I have no doubt that she loves me in her own way, it’s not a relationship that I really lose any sleep over for lack of a better description at the moment. That being said, at the time, the only reason my family found out what was going on with me is that I barged in on my grandfather while he was shaving one day, sat on the pot, and filled it with blood. At the time, I was 4 years old so you can imagine the chaos that ensued from that episode. Per my grandparents, I was nonplussed since it had apparently been going on long enough that I considered it to be relatively normal at least by my limited perspective. I got up and walked out of the bathroom amid the chaos and carrying on only to find myself at the ER shortly thereafter with a bunch of freaking out adults all around me and one very, or so I’m told, horrified social worker. Thankfully, that portion of the story, again as I’m told, resolved itself rather quickly when the ER personnel decided that abuse wasn’t an issue in my case.
I was immediately carted off and hospitalized at UCLA and underwent what I recall were a series of invasive tests none of which were conclusive. The first diagnosis that came down the pipe and the only one I seem to really remember with any clarity now was leukemia/cancer that was presenting itself in an unusual way. You have to bear in mind that when my UC was flaring it was remarkable the amount of blood that such a little body could produce and still manage to be upright. Staggering, really. In any event, years later as an adult, with a bad case of pessimism when it comes to most things, and after working in the med-legal profession for most of my life, I realized that this was nothing more than doctor speak for “we don’t know what the hell is wrong with her but you better get your affairs in order because we don’t expect that she’ll live very long. Sorry.” This in and out parade to and from UCLA went on, as I recall it, for several months as did the invasive procedures, as did the eventual sedations that had to happen because after one too many bowel preps with what they used back then which I recall being some vile shit (no pun intended), I couldn’t physically stand it anymore and would revolt. Come on, I was a little kid, my instincts tended to the run and hide method of dealing with things and in the alternative the kicking, scratching and biting method. I bit a lot of people back in the day, to be sure. Anyway, finally, a tentative diagnosis was made when I started to minimally respond to massive amounts of steroids that had been given to me at the suggestion of an internist. Make no mistake, that I have nothing but bad memories and recollections of this time in my life that are full of very vivid, painful pictures in my head of what I was subjected to; however, I do recall fondly that I was the “pet” in the peds ward at UCLA for too many years to count. I also fondly recall the interns organizing wheelchair races and gurney races for the little girl who seemed to constantly be on the floor for one reason or another, but usually for bleeding to the point of it being frightening. At the time, we’re talking some almost 40 years ago, UC was not something a 4 year old female had let alone in its most advanced stages. I was given a pretty bleak outlook on life, however short that may end up being, and pretty much suffered every indignity that you can imagine and then some while I was either being ravaged by the disease progressing or the massive amounts of Prednisone I was being forced to take. Prednisone the steroid that keeps on giving, and not in a good way. I despise that drug with every fiber in my being. I get that it’s what kept me alive; however, I have often wondered when I was at my sickest, what kind of life, exactly, had it allowed me to live? In any event, I lived like this for years. Was it a life in the general sense of the word? Not by a long shot but it was all I’d been offered and at 6 going on 7 years old it’s not like I really had a whole lot in the way of choices in terms of what I would and wouldn’t do although I do recall, as I said, that biting became a big weapon in my arsenal as did refusing to open my mouth, kicking, screaming, and generally acting out in every way I could. It would work for a little while but eventually someone would find me, or catch me, and they would drug me, bowel prep me, and off to another procedure I would go…
In any event, my life, such as it was, basically consisted of going to school maybe once or twice a week and then being admitted to the hospital because something would set off a bleeding episode that would either render me dangerously anemic or could potentially kill me from a stroke. I was taking as I recall it, massive amounts of Sudafed and Prednisone, along with the occasional antibiotic and crazy amounts of Lomotil. At that stage in the UC game there wasn’t much else they could really give me but my UC was relentless and I could go though a Lomotil prescription in a week and my UC would smile and keep on coming… Anyway, as you can imagine, school when I was actually there, was not fun. Kids can be exceptionally cruel to the one they perceive as being different or unusual and given the amounts of steroids I was on, I was fodder for them and labeled “a freak.” Now, when you add to that the fact that I spent recess at the nurses office because falling and getting hurt given my bleeding issues, could be a liability for the school, and the accidents I would have, and they were common, and you can imagine that all the worst, most hateful parts of growing up were things I suffered at the hands of more than one bully. I can tell you stories of things that were done to me that would make any parent shudder and look at the whole concept of homeschooling in an entirely different light. No child should have to go through what I went through. EVER. As I recall it there were even some teachers who got in on the bullying/taunting game and at that point, harassment in the school environment was not something parents knew enough about to sue over so I was pretty much victimized on all fronts.
I specifically remember one teacher who made my life hell and she was the P.E. teacher. Anyone who has severe UC knows that when you’re having a flare which in my case was pretty much every day on some level, physical activities become nearly impossible. This woman, in spite of the fact that I was chronically pale and had what they call “raccoon eyes” from the pernicious anemia I had insisted that I was lying and that I was a slacker. She equated the fact that I was “fat” with my being lazy. Stupid bitch (yes, I hate this person even now) was too ignorant to understand, in spite of several parent-teacher conferences that I wasn’t fat. That the illusion of fat was due to the Prednisone,making me swell and it had nothing to do with being lazy. Apparently trying to explain that to the Neo-Nazi, frizzy haired, manly, bitch who’s name escapes me at the moment was an exercise in the impossible (I’ve done a really good job of refusing to remember a lot of my childhood until it suits me.) Anyway, she wouldn’t have it. She spent two years finding interesting ways of torturing me right along with the others. I imagine she got a kick out of it on some level as generally speaking people who are that eager to be that cruel usually get off on it as it fills some kind of basic need they have to be superior and I guess in retrospect she was a Philistine on her best day and asking her to understand a medical issue of that magnitude was a stretch. However, I feel I have to point out to all of you who have children who might be suffering from strains of UC, this is a teacher y’all. Someone you would think who would know better or at the very least be psychologically fit enough to be cut loose among young kids in order to teach them and provide an example. Not so much… As parents, you need to be aware because if your kids have UC in its advanced stages being victimized at school, regardless of whether they tell you or not, is coming at them from other kids and believe it or not some of the adults who are simply not emotionally equipped to deal with a fruitfly let alone a sick child. In any event, I digress, this woman didn’t know better and if I had a quarter for every time she got in on the taunting with the others when I couldn’t participate, or every time she “made me an example” to the others and there were many, or every time I had to write volumes on why “being a liar, fat and lazy” as punishment for telling and having her trotted in to another parent-teacher conference, let’s face it I’d have several warehouses full of quarters. It’s funny, in writing this I realized that I’d effectively blocked her very existence out of my mind until just now but the name Trainor comes to mind, Ms. Trainor… I’ll have to look into that. She’s someone I’d love to look up on Facebook and have my lawyer contact her just for shits and giggles and to put the very fear of God into her. Anyway, this went on for the entire time I was in grade school. As I said, had I known better I would have gone back years ago and sued the school district but the SOL has run on what I could sue for. At the time suing the school district for anything would have been unheard of so really it’s no ones fault that as a society we didn’t know better and were unaware of the level of bullying/victimization that goes on right under our noses and in our schools. Thank god people have gotten wise and this has changed, and today’s parents have a clue and will sue bullies for bullying right along with their parents and the schools for inadequately dealing with the abuses and victimization that goes on under the very noses of the so-called “system” and the “trained and educated adults” running the system on a day-to-day basis.
In any event, grade school went on and I graduated by the skin of my teeth from 8th grade and massive amounts of pills and wearing an incontinent diaper. However, if you’re thinking that high school was any better you’d be so very, very wrong. High school was more of the same torture only now it was really messing with my head and my self-esteem because after that many years on the Prednisone and the level of dosage my entire body had been ravaged. Add to that the diaper and add to that, that when you’re 6 or 7 years old having an accident is not nearly as traumatic as having one when you’re a teenager and you just maybe have a tiny idea of what my life was like. Now, go a step further and imagine how hard high school is for girls to begin with, and add into that equation the indignities of having UC, the ravages on your body that the Prednisone subjects you to, the accidents that I mentioned, the fact I couldn’t form any real relationships given that I was out of school more than I was in, and I was again fodder for bullies. There is no scarier bully than a bully that takes shape within a teenage girl. I went to an all girl Catholic school – you do the math as to what I was subjected to when I was actually there. Moreover, the overwhelming sense of inadequacy that I felt because nothing I did could ever put me in a place where I could even pretend to fit in, and it was a pretty odious experience that I had on every front. I never had any of the milestones most high school kids have. I never dated until very late in life because I simply didn’t look like the other girls so the normal high school experience in that regard was lost on me. I missed out on just about every conceivable experience that most people take for granted. No camping. No concerts. No parties. No friends. So, the point of this is that by this time, the Prednisone had had its way with my body and not in a good way. I had excessive hair growth in places girls typically don’t, fat deposits in places that you couldn’t diet away and that’s making the crazy assumption that I could’ve dieted if I had wanted to and the even crazier assumption that dieting would’ve gotten rid of “fat” that we all know in theory has little if anything to do with calorie ingestion, and more to do with the way your metabolism processes calories regardless of where they come from. I had the moon face, the grease pit skin, and pretty much all of the worst parts of the steroid that just keeps on giving. In short, high school was a bitterly, lonely, and extraordinarily hurtful place. I contemplated suicide more than once but a Catholic upbringing made me too much of a coward to ever do anything but contemplate so I trudged on. I became a champion at sucking things up. For real, if sucking it up was an Olympic sport I woulda Gold Medaled. I cannot tell you how much I sucked up in order to try and pretend to fit in; however, the space here is small and it would take volumes to adequately cover some of the stuff I endured and simply learned to ignore. I did have one milestone, however. I got my driver’s license but I gotta say that that kind of loses its poignancy as a major milestone when you have so many accidents in your car that the smell of bleach just won’t come out.
In retrospect, I should have been a stronger person and insisted on being taken out of school or home schooled or something because much of what I suffered at the hands of some of those people is what made me get involved with the first man who looked at me years later and subsequently allowed me to involve myself with the second man who looked at me, and eventually almost ruined my life. Don’t get me wrong, I graduated high school. I created a successful business that generated in the high six figures for years, and I had a lot of good things happen to me, but when the economy crapped out and the stress caused my UC to come back in a different manner, my ex, the man who was the love of my life, bailed faster than a UC patient can find the only bathroom within a three foot radius.
Let me back track, throughout grade school and most of high school I was taking so many pills on a daily basis that I swore if I moved around too fast I would rattle. Now, skipping forward through more of the same of what I put up with as a kid and a teenager let’s talk about Junior year in high school. This was the year I took it into my own hands to change things or die trying. I had spent the last 13 years of my rather short, miserable life taking up to what 50, 60 pills a day of one sort or another, or being alternatively poked, prodded, invaded, and subjected to crap that UFO Abductees claim to have had done to them by little green men only without the benefit of a movie, a book deal, and the ensuing notoriety. I was done. I was soooo done it was scary how done I was. So my Junior year I mustered all my bile and anger, and I made an appointment to see my doctor who I happened to love, and demanded surgery. Again, I need to back track here. My doctor at this time was at Cedars and not the same cutting-happy advocates that my doctors, specifically, one evil little man at UCLA had been. If he’d had it his way my colon would’ve been hanging on his wall as a trophy back when I was 5 years old. Evil, sardonic bastard. In any event, my care was transferred to two highly respected doctors at Cedars who were leaders in the field. In all honesty they did everything in their power to keep me out from under the knife over the period of time I was with them in spite of my habit of storm trooping their office when I was having a particularly bad hair day and demanding the surgery (I was young and stupid). I credit the two of them for the fact that I never ended up under the knife. With that being said, the year I was a Junior in high school, I mustered up all that resentment that had built up over the years, stormed the office again and demanded surgery again. I was done. I was done with the whole mess and in my mind surgery equated to a cure, which equated to no more drugs, which equated to no more of the vile shit (no pun intended) and side effects I had spent my short lifetime dealing with quite literally speaking on a consistent basis. God love that man but he cleared his calendar for me and spent that entire afternoon dealing with an unreasonable, hysterical teenager explaining to me the reasons why I didn’t want surgery and why he wouldn’t do it. In retrospect I love them both but him especially for not giving in. I realize now that most doctors would not have taken the time under the circumstances to convince a teenager why she shouldn’t ruin her life any more than it had been. He could’ve easily given in, in light of the symptoms that I still had at the time and I could be writing a very different story right now. He didn’t give in. His partner didn’t give in either in spite of my screaming and here we are.
However, be that as it may be, at that point, the Prednisone, was killing me now in every conceivable way. In truth, I had taken so much of it, it was probably poisoning me and I’m pretty convinced that it was becoming toxic to me based on some of the crazy stuff that had started to happen from insomnia to thunderclap migraines that felt like someone was crushing my head, to fainting spells, that had no explanation, rational or otherwise. I recall rashes that would show up out of nowhere, and cover every inch of my body and made me feel like someone had doused me in gasoline and had lit a match, and the crazy mood swings where I could go from perfectly fine to white-hot anger in 60 seconds. There were other symptoms that seemed to have no explanation, rhyme or reason, but at the moment those are the things that I remember most vividly because even now I suffer from migraines that will buckle my knees and come out of nowhere, and rashes that just welt up my skin out of nowhere and I haven’t taken Prednisone in years. My moods don’t swing violently anymore, but I’m far from being the most laid back individual on the planet and do have what can be described as a hair-trigger temper. With that being said, no one was connecting the dots with me but I was making my own conclusions that this drug was simply not working in my benefit anymore and whatever good it was doing assuming it was doing any good at all, was far outweighed by the bad and after several more trips to the ER where I would be screaming for something to make my skin stop burning, the summer after I graduated high school, after a particularly painful bout of inexplicable pruritus that sent me to the ER with jagged sores on my feet and the palms of my hand, I made an executive decision and stopped taking everything…
That was a crappy summer. The yelling from my grandparents was relentless. I got grounded, screamed at in two languages(English by my dad and Spanish by my grandparents), and had the car taken away from me (I really didn’t care all that much it smelled funny anyway). I stood my ground. My grandparents were beside themselves, but I was resolute and stopped taking every last medication that I had been on, cold turkey. My dad finally gave in and said that there was not really much they could do unless they were willing to force feed me the pills. They weren’t. Neither was he. They did, however, cart me off to my doctor hoping he would talk sense into me. Yeah, that wasn’t going to happen. As I sat there, I can honestly say I felt two inches tall. The silence in that room with my doctors was deafening and between the stink eye I was getting from my grandparents and my dad, and the stink eye I was getting from the doctors I was having some serious second thoughts about my executive decision but I carried on and I swear that when I made the announcement, which my doctor had already been briefed about by my father, the air in the entire room went rushing out. You can imagine the response I got and then came the prognosis that was given to my father and my grandparents (my mother, although she was around, was removed from having anything to do with my care long ago and I lived with my grandparents who for all intents and purposes were my parents and still are as far as I’m concerned). Anyway, in short, I was given a death sentence. My doctors were not happy with me. I got threatened with more colonoscopies which I don’t know where I found the courage to veto but did, and I got sent out of the room. To this day, I can only imagine the conversation that went on behind that closed door. However, I had made up my mind that short of committing me, tying me down, and force feeding me the pills, putting me in a straightjacket and forcing me to have colonoscopies every three months, I was done and the whole lot of them could take a long walk off a short peer. Remember the mood swings? Those lingered for a long while. I was extraordinarily angry and in retrospect, I imagine that there was a small part of me that really didn’t give two shits about my life and secretly hoped that it would all go horribly wrong and backfire on me. I was pissed off and justifiably so. I didn’t have a whole lot of regard as a result for the value of my own life at the moment and truly didn’t give a shit. In retrospect, it hurts me that I put my grandparents and my dad through some harsh, scary times when I did that, that they didn’t deserve. However, at that moment in time I really didn’t care because I was done. Well, imagine everyone’s surprise when my UC went into remission. Completely. I went from having a constellation of symptoms to getting progressively better every day that went by. With that being said, I proceeded to spend the next several months detoxing my body of the steroids using liquid fasts, lost most of the weight, went to a dermatologist and aesthician to treat the hair growth and skin issues, and enrolled in college, and for the first time in my life had something that resembled normal. However, it was not without difficulty and it was not without its very own set of emotional and psychological trauma…
The emotional and psychological hits I had taken throughout the years dealing with the UC were far harder to get rid of than the physical ones. I still never completely fit in. I don’t remember a day that I didn’t know and couldn’t tell you EXACTLY where every bathroom on the CSUN campus was located, both the ones that were for student use and the ones that were for faculty use. I really didn’t care and wasn’t opposed to the notion of railroading someone to get to a toilet. I also don’t remember a single day going by when I wasn’t crossing campus where I didn’t walk at a faster pace than most or said a little internal prayer that I wouldn’t get a cramp in spite of my tenuous relationship with a God (I had some serious issues with God because I blamed him for cursing me without giving me a good reason as to why.) The point is I dealt with stuff daily that your average COED did not. In any event, I had my moments, good ones and bad, because my UC had a funny way of being dormant for weeks and then suddenly showing up for a few days at the most inconvenient times. I was fortunate it was never major bleeding but it would manifest itself in the most painful, mind bending, reality altering cramps you could imagine. However, I learned to live with it the best way I knew how and carried on. At this point in my life I was good and angry at most things and refused to be beaten by anything or anyone, including a God who I was convinced was using me as his very own personal patsy. However, in keeping with my refusal to give in even or to let Him beat me, I went to school full-time, I worked full-time, I was part of the Greek system, I dated A LOT, but ironically and I guess understandably never really developed any hard and fast relationships because I didn’t trust people, and always walked away before things got too serious, however, in spite of all of it, I had as I had said, the closest thing to normal I had ever had. I did one boyfriend who I adored who knew about parts of my UC and dealt with it graciously for a couple years… I was as close to happy as I could ever hope to be, but like all things in my life that were related to happy or normal, when he graduated he broke up with me. I was devastated.
Fast forward to my Senior year in college. I was now working 70 hours a week, and going to school at night. I met an older man in my work and married. He was not someone that I would’ve or should’ve married for a variety of reasons but I was out to prove I could have normal and in my mind this was part and parcel of that. However, the UC was always a spectre in my life and in spite of my remissions, I knew the potentiality of what could happen, and I wore an incontinent diaper during the ceremony. Again, most brides don’t walk down the aisle wheeling and dealing with God that if He lets her make it through the ceremony without a cramp maybe she’ll actually go back to church and actually listen to the sermon without scoffing. Alternatively, I remember resenting God at that moment to the point of actively, genuinely despising him, making our relationship that much more tenuous in my mind but again, in my mind, he had massive explaining to do as to the Whys. I walked down that aisle thinking why me? What could I have ever been guilty of that I deserved to have to suffer this kind of curse from the age of 4? I didn’t walk down that aisle with anywhere near what could be considered normal thoughts at ones wedding. Bottom line, I’ll never have that experience more than likely because at 44 years old, I just don’t see meeting someone in my future and I’ll talk more about this briefly, later. Anyway, back to my wedding… I eventually got over it and I was married for 2.5 years, the marriage was a mistake. It was tumultuous for a variety of reasons. Bottom line, I was out to prove something and I never should have done it. Although my ex-husband was not a shining example of what a good man really is, he was a decent man in his own right and when I bailed out of that marriage I know I hurt him. He has since remarried and has a child or so I’m told so I’m glad that he got his happy ending on some level… You can’t force normal and I was trying way to hard.
Anyway, after leaving my husband, I met the love of my life. It was a year later. Too bad he was all talk and didn’t feel the same way about me as was evident from just about the get go but what is it about the bad boy that always is such the allure to most women… I loved him with everything that I had. I was with him for 17 years. Suffice it to say that he did everything in his power to destroy my life. I laid all my cards on the table to him and that man did nothing but torment me on his best day. He never got it, never made any attempt to understand anything about UC, blamed me for things that were out of my control and generally did little more than use me. He clearly didn’t love me enough to care enough to be the kind of man who could mitigate what I went through on a daily basis dealing with the after-effects of the UC, and I believe that had I had a stronger sense of self I would have seen that far more clearly, and would have walked away from him long before he got the chance to destroy my life like he almost did. However, when your sense of self-worth has been ravaged by a disease like this one, you tend to think in absolutes and my thought was always: who else would want me? I’m lucky to have him. I wasn’t lucky, I was fantastically stupid. With that being said, I built a life and a successful business next to this man, helped him build his business, and was on easy street financially for years until Bush jacked our economy, but that’s a rant for a different day. The point of this is that UC had put such a hole in my entire sense of self that I honestly felt I could never do better, have better, be better, and my ex being the evil bastard that he is, took that ball and ran with it, and so on and so forth as the story goes.
So as you can see the UC not only did a number on me physically but it had some very derogatory effects on my life emotionally and psychologically. With THAT being said, it’s been three years since we parted… there’s more to this part of my story but not anything that really has a lot to do with the UC aside from what the UC did to my sense of self-worth so I won’t go into it here but feel free to ask me about it if you’d like. His reactions to some of it were telling of how the soulless react to what they perceive as being a weakness.
However, prior to meeting my ex, I had since made peace to some extent with the physical effects of the UC and had/have worked hard to turn myself into the woman I never got the chance to be when I was a girl. And guys, sorry, but only the ladies on here who have had UC mess with their looks from an extremely young age will get what that means. I have spent some long hours making myself the woman I am today on the outside and I’ve been told that I look like Neve Campbell, a brunette Meg Ryan, and most recently Sara Ramirez. I remember my ex being proud of my looks and it was like my worth was directly related to that. I don’t see my similarity to these women, but considering I used to be convinced that I looked like Shrek I guess I could do worse and it’s damn nice to hear given that again, I remember all too vividly what I looked like during the times I was taking 20 or more Prednisones a day just to keep the bleeding at bay. In short, I’ve been told I clean up nicely. I guess that’s nice to know. It took a lifetime to get there and that is not to say that things are perfect as they are far from it. I’ve recently gained 20 pounds because I hurt my back and have not had the energy to get back on an exercise program and the holidays were very difficult so I pretty much ate everything that didn’t eat me first. Moreover, these days I suffer from what I know to be the other side of the UC coin, in terms of physical symptoms. Read that as being crazy, extreme constipation, bloating, a general feeling of being unwell and not being able to describe it any better than that, dysmotility, joint pain, and that’s notwithstanding all the emotional Samsonite I carry around for a variety of reasons. It’s been tough to be sure and again I will share more specific of this part of my story with anyone who asks.
Now, having made the decision I made to never go back, I also live with knowing that every day that passes puts me at risk of cancer, because of what I was told at my last colonoscopy which was what 20+ years ago… my colon has mutated so much that it’s perfectly smooth. Basically, I’m one step away from full-blown cancer but, I refuse to go to a GU doctor for any reason at this point in my life who isn’t one of the two I mentioned above and they have since retired. So there ya’ go. I simply can’t and won’t do it for any reason. That’s my choice, I’m okay with it, and in spite of the risks I know that I am playing roulette with, I’m okay with that too. I’m not afraid to die. My theory is God doesn’t miss and the bottom line is that if he’d wanted me dead from UC he woulda killed me a long time ago so chances are good UC won’t be the end of me. (Yes, God and I are still on the outs on most days although I’m starting to come around ever so slowly; however, in my mind the picture I had of God for most of my life, was that he was a pimply faced, prepubescent grade-schooler with a huge magnifying glass and an ant farm and that I was his favorite ant. Also, remember, I’ve had the Last Rites read to me, more than once so I’m good and not really too worried about it at this point though with all the uproar about 2012, maybe I should be??)
In short, and all kidding aside, I’ve made my somewhat intangible peace with God, although I will say that He has some wicked mad explaining to do when I get to the hereafter, but that’s a rant for another day as well.
In any event, the point of this part of my story is that UC is far more than merely a physical problem or physical disease. I don’t think that enough people realize the effects of UC on the parts of the body that they don’t see, can’t poke, prod, invade, scope, palpate, or otherwise mess with. Most doctors don’t treat the whole person, and subsequently a person’s mind, a person’s sense of self, a person’s self-esteem, a person’s self-worth, a person’s sense of stability, a person’s sense of security, etc., are all detrimentally affected by the aftershocks of UC, and sadly until GU doctors learn that they have to treat far more than merely a person’s gut in order to get to the real cure of UC there are going to be people out there suffering from far more than just physical symptoms that are untenable. I can promise you that as awful as the physical symptoms of UC are the inner symptoms, the ones you keep to yourself, the things you think and can’t bring yourself to give voice to, the stuff you could never say out loud because you be risking making it real, that, THAT right there, THAT STUFF, that stuff can fucker your life up faster than any UC flare. Trust me. It’s all that stuff you can’t bring yourself to say about what you feel, what you’ve experienced, that stuff is what eats you alive and unfortunately there is not a GU doctor on the planet that will even address it with you short of possibly sending you to therapy; however, how effective can therapy be when your therapist has absolutely no point of reference on the abomination that we call UC? They can’t and rarely are very effective. Again, trust me.
At this stage in my life, I have my business that pays the bills and I am also a Wellness Coach and specialize in chronic illness, specifically children with chronic illness and what I do is palliative in terms of treatment at best; however, I hope that it can make the difference in someone’s life that a doctor that is only treating the physical symptoms is not making because they simply don’t understand that UC is far more than a constellation of physical symptoms that can maybe be ameliorated with cutting “but no promises” or hateful drugs but again “no promises.” You know, that whole schtick “but no promises” is all fine and good if you’re at the end of your life and have nothing left to lose but telling that to the parents of a child who has UC or telling that to a teenager who suffers from it, not so much. And yet, here we are and doctors still don’t freakin’ get it… why??? What is so difficult to understand about the simplicity that a disease that does what this disease does, in a word can potentially make you crap your f-ing pants, explosively, is going to heavily mess with someone’s sense of self on every, possible level. I don’t care who you are. You want to render someone completely, emotionally, psychologically useless, you have them lose control of their bowels, explosively, while they are cognizant of what’s happening and yet have no control to stop it, mitigate it, or otherwise get away fast enough to keep anyone from experiencing them lose what? Control? (Come on now, when did anyone ever tell you UC was about control? Control has nothing to do with it and you can’t lose something you don’t have to begin with, plain and simple.) You have someone lose control of their bowels while they are fully cognizant of it and you are messing with every aspect of their perception of Self and who and what they are at the most basic, human level, and where they fit in as far as society. You are messing with the very basic things that make them tick. Again, Trust me. Why this is so difficult for the medical profession to get shocks me. One of the first things we learn as children is the difference between clean and dirty. Why then is it so bloody hard to conceive that people with UC have some seriously wonky perceptions of how they personally relate to the whole concept of clean, let alone dirty? And bottom line, Baby, if you are a UC victim and you say that you don’t have issues with the concepts of clean and dirty you are a boldfaced liar or you are delusional and quite possibly of those things in equal parts. I’m not trying to be harsh here, and no, I’m not bitter, I’m just speaking to you from a point of reference of having been there and having done that, and knowing as well as I know my name, that you simply cannot and do not fit in, when you suffer from a disease like UC. Period. Those of you who have dealt with some of the things I have understand this, those of you who don’t and are on here from the perspective of being a spouse, or a parent, of an SO, won’t ever completely get it although I applaud you for coming here and trying. There are things that people with UC NEVER say out load for fear of giving it too much power or making it way to real and those are feelings you can’t possible hope to get unless you’ve felt them… frequently.
Now, with that being said, and at the risk of being labeled bitchy or pissy let me get to the nuts and bolts of some of this psychology and yes my degree is in psychology. Do you seriously, honestly think if you refer to it as an “accident” it somehow is going to make people recoil less? Judge you less? Be repulsed less? Be less critical, cruel, or denigrating? Laugh less? Give you that look less? Be less mortifying? Humiliating? Is it going to make you feel any less disgusting? Question your worth less? Question your desirability less? Question your ability to be loved less? Question your humanity less? Oh my God do I ever have the 4-1-1 for you. Not only is a litany of all of the foregoing going through head when it’s happening but it’s chorused with an assortment of self-flagellating remarks because no one’s, NO ONE’S self-esteem is built to handle the kind of psychological assault that ensues as a result of explosive, uncontrollable trots in a public setting when you are above the age of 6 years old. Excuse me, for playing “let’s state the obvious” here but it’s bad enough if you’re a lay person and can’t see the correlation there but if you’re a medical professional and you can’t make THAT correlation then I got news for you, you’re a bigger asshat than I thought you were and you flunked bedside manner. Moreover, you need to get over yourself because your medical degree is pretty useless. I’m guessing that’s what you get when you go to Bubba’s School of Medicine and Chicken Wings, yes? What I’m suggesting is you quit your day job and go work in government where rampant stupidity, and being dangerously obtuse seems to be a job requirement these days. But hey, I’m just saying…
In any event, that is my story for all intents and purposes, and although there are some ginormous parts missing because I’m tired, it’s late, and I have to get up and deal with clients in the morning, it is who I am and it is a portion of what I have dealt with in my life such as it is. Is it okay? I don’t know. Am I’m okay with it? I honestly couldn’t tell you and it’s a crap shoot on most days again no pun intended. I have my good and bad days just like everyone else. However, it has been a rocky, hard, hurtful, painful, scary, lonely road that I wouldn’t wish on anyone, well, except maybe my ex but that’s a rant for another day the evil bastard.
Oh and if you haven’t noticed yet, I tend to make a sarcastic joke of most things, it’s one of my coping mechanisms. Anyway, all kidding aside, I honestly don’t think we’re anywhere near being close to finding a definitive answer for any of what any of us have gone through or what those that come after us, will go through. UC has no cure only varying degrees of Band-Aids that, let’s face it, on their best day ameliorate only a very small portion of what we deal with. I am, however, convinced that until doctors start to treat the whole person, specifically a UC victim’s emotional and psychological self, they won’t ever find anything that resembles a cure or a feasible treatment that isn’t worse than the actual disease.
With all that being said, I’ve read up some on the SCD and it looks like a holistic approach to mitigating the symptoms and I’m all for that. I think if it works it’s perfect. If it can mitigate the drug use then it’s more than perfect. If it can take people off the Prednisone altogether then it’s manna from heaven because that drug is evil. If it makes a person feel better then it’s beyond perfect and it’s a great start.
One last thing, I don’t advocate to anyone who has UC to stop taking your meds cold turkey, nor would I advocate ever calling bull-shit on your doctors and refusing to ever go back. However, I do advocate that you educate yourselves especially those of you who are here as parents to children of UC. The choices I made were reckless and in retrospect I should have maybe thought about it a little more and found some alternative solutions, but make no mistake I don’t regret it. However, I do see that I was definitely and extraordinarily lucky. My decision to stop the meds and refusal to go back to my doctors could have gone fatally wrong and I could be little more than someone’s memory right now. Bottom line I got wicked lucky. When I look back on it, I realize that my decisions were rash and I put my grandparents through some really scary moments that they didn’t deserve. In retrospect, I also wonder if the symptoms I have now may not be a logical conclusion to what I did all those years ago, but we’ll never know… but, I speculate that on a more probable than not basis, yes, they are connected.
The point is that everyone has a path they have to find that works for them and it’s a blessing that places like this exist now to help people find those better, healthier, far more rational paths to travel, than the one I took. I’ve made a staggering amount of mistakes in my life, some I can relate directly back to my UC and what I suffered through as a kid, some I can’t. I can only hope that those that come after me won’t have to learn about treating the whole person the hard way, the way I did, so that all those things that can and will go wrong in a person’s emotional and psychological makeup as a result of the UC, can be ameliorated and taken care of so no other little girl or little boy has to grow up suffering the way I did and looking for validation in the arms of all the wrong people and in all the wrong places. I got involved with someone who for all intents and purposes made me feel worse than the UC ever did and I know that I would have gotten away and out a lot sooner, had I not grown up feeling the way I felt about myself and that is directly attributable to the UC, which is why I chose to be a Wellness Coach because I can actually, honestly say I get it when it comes to the very unique issues a UC survivor or victim deals with and at the risk of sounding trite, I’ve been there and done that for a very, very long time…
At the risk of having gone too far at times with the telling of my story and at the risk of getting massive amounts of hate mail, for being equal parts derisive and irascible, if you have any questions feel free to get in touch… I’m glad to be here and hope to read about everyone’s experiences…
I’m in the textbooks or at least I used to be. When I was diagnosed, I was one of the youngest cases of UC known to the UCLA GI Program and was part of their teaching protocol for many years until I was moved to Cedars. I was 4 years old when I started having severe (read as near fatal) UC symptoms and was diagnosed, definitively, a year later after countless invasive procedures and three rounds with a priest giving me the Last Rites.
