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Hey gang!

I just want  to tell you and warn you about some thing I never knew about. Like many G.I. patients, I suffer from kidney stones. A lifetime of prednisone causing osteoporosis forces us to take a lot of calcium, and in turn, causing diabolically painful kidney stones. I had three of them this time (i’ve been getting them for over 10 years now), 8 mm, 5 mm, and 3 mm, which doesn’t sound like much, but if you’ve never had them, anything over 5 mm is considered serious, and as they make their way down your ureter, which is filled with nerve endings, it scratches the hell out of it, and feels like you are giving birth to a ball of lava! Normally I stay home, but this time was too painful and went to the hospital by ambulance because I couldn’t walk from the pain. They had me on the highest dose of morphine, and gave me Flomax, A medication that helps dilate the ureter making it easier for the stone to pass. They could have taken me to lithotripsy or cystoscopy, but both are very invasive, and the doctors recommended passing it naturally if I can, and admitted me, pumping me full of IV solution, here’s where it gets difficult and interesting. I can’t tell you my entire history, it takes too long, I had a J pouch for 15 years after suffering a toxic megacolon, a.k.a., my large intestine ruptured. Unfortunately, pouchitis was uncontrollable, so I tried for a k pouch, Long story short, 37 operations in total over three decades left me with less than 5% of my G.I. tract, removing my rectum, large intestine, and almost all of my small intestine. I mentioned that because it’s relevant to what I’m going to say. I now have short bowel syndrome, a.k.a. short gut syndrome. Here in lies the problem, I don’t have enough intestine left to absorb a sufficient amount of nutrients and fluids to sustain my internal organs. I am on my eighth ileostomy, I lose all of my fluid through my stoma, my output is pure water, and acidic at that. I lose over 2 L every day, sometimes more, and no matter how much I drink, it doesn’t get to my kidneys because my Very short got simply cannot absorb enough, leaving me extremely dehydrated all the time, to a point where I finally suffered massive kidney failure, and I was rushed back into the ER after my nephrologist saw my bloodwork. I went the first time because of the pain, it took a few days to pass all the stones, and I went home, only to be sent right back by my nephrologist, who told me that my life was literally in danger, that my kidneys had completely failed, and that if I didn’t get to the hospital I actually could die within a few days. He called an ambulance on my behalf because I just didn’t know what to do, I was panicking. I get back to the hospital, do more scans, only to find five more stones hiding in my kidney just waiting to come out, and both of my kidneys completely dead, non-functional . I had no idea this was happening, I didn’t really have symptoms because it came on so gradual I just thought it was part of having no intestine, but the doctor told me my kidneys had actually been failing for over 2 years, yep not one single doctor bothered to even look at my test results, as I go for blood work at least every three months. I was so angry that they let this go for so long without even telling me. Because I worked in that same hospital for over 20 years, I still had access to the computer even though I’m technically on permanent long-term disability, and usually song every reading in read, several readings emphasizing I needed immediate attention, but again for two years not one doctor said a word, in other words nobody bothered to even look at my lab work. Why order it in the first place if they are not going to check it?  They immediately gave me a PICC line, and pumped leaders of saline into my body to revive my kidneys. Thank God, literally, that they were able to revive my kidneys and bring them back to a functioning state. When it came to urination, because I lost all fluid through my stoma, I never questioned why I had such little urinary output, I just never gave it a second thought. When you’ve gone through 37 surgeries, you tend to overlook things that don’t seem that serious, and I had no idea, so I wanted to tell you, especially any of you that head any type of G.I. surgery shortening the length of your intestine. My case is on the very extreme end, representing only 0.01% of all gastrointestinal patients , but it can happen to those who have had only some of your intestine removed. It all depends on the person, the body size, and all different factors. My urologist, my gastroenterologist, both my surgeons and my GP all told me that from this point forward, now that I’m 53, I should expect many of my internal organs to start failing, because I simply do not have enough intestine left to absorb enough of what I take in orally to keep my internal organs functioning properly. To prevent it, on top of everything else I’ve been through and been diagnosed with, having nine chronic illnesses in total so far, now I have a 10th, being diagnosed with acute chronic kidney disease. For four hours a day every second day for the rest of my natural life I am doing home intervenous. Likely because I worked in the medical profession I know how to operate the pump, and I don’t require the nurse to come and do anything, I can do it all by myself, but it’s a hard pill to swallow, I already take more medication than both of my elderly parents combined, I was forced to stop working seven years ago and go on permanent long-term disability, I keep being diagnosed with a new disease almost every year, and this year is no exception, and to add insult to injury I was diagnosed with Covid the day I finally got home from the hospital  After my second hospitalization. When you’re so immunocompromise as we are, Covid reeks havoc with your entire body, it is killing me slowly even though I’ve had all my inoculations. My apologies for the long message, but I wanted to instill in everybody who’s had any type of G.I. surgery to be mindful of how your body is functioning. The doctor told me that if I had waited any longer, the damage would have been irreparable, and I would’ve required dialysis permanently, but still, to spend four hours every other day for the rest of your life getting IV infusion to keep your organs alive it’s not something I even anticipated or even thought about that matter. So I wanted to tell you guys, so that you are aware of the possibility For any of you that are in my situation, or close to my situation. The doctors told me that people who had even some of their intestine removed often encountered of these problems, let alone somebody like me with almost no intestine at all. It’s one heck of a diet though! At 5’10” tall, I was always a stocky guy most of my life, but since my very last surgery in November 2018, I went from 220 pounds thanks to the prednisone, to only 130 pounds if I’m lucky…I just can’t gain weight, and I’m getting fed up with everyone asking me if I’m dying of cancer! No matter how much I eat, all it does is increase my output, nothing is getting absorbed, because for all intents and purposes, what little intestine I have left is dead, and there’s nothing I can do about it except rely on intervenous nutrition and hydration. I can still eat, which is a good thing, so I can still taste my favourite treats, but everything in moderation, I can’t ever again go to my favourite restaurant and just pig out like I used to, because I know I’ll pay the price for it for at least three days afterwards. I lost count how many times my bag has ruptured when I’m sleeping, if I eat or drink too much before bed, my bag can fill up in less than one hour to the point where it literally explodes all over me, my bedding (I use waterproof sheets to avoid ruining the mattress), and my poor husband Fredy. We’ve been together for almost 34 years, that poor man has literally been crapped on by me dozens of times, yet he never flinches, while I run to the shower, often crying like a little girl because I’m so upset, he never says a word except to encourage me and comfort me, he’ll change all the bedding, help me in the shower,  and try to get me back to sleep after I’ve changed my appliance. I am so lucky to have a spouse like that, it’s so humiliating not being able to control your own intestine, so generally I never ever eat or drink anything at least five hours before bed, if I do,  I know I’ll pay the price, and often my poor husband has to pay the price to. I don’t know how he can stay so calm and loving, I just know that I am so lucky and appreciative. Life with no intestine can be a lot more than you bargained for, I never got used to my bag bursting at night, but at least I could cope with it as long as I have my husband to hold me together when I feel like falling apart, but now that my internal organs are starting to shut down, there is nothing he can do to help me in that regard and to see him suffering because he’s so worried about me, and the same goes from my wonderful parents whom I both still have, makes me feel like a piece of garbage, sacrificing so much for me, I’m still putting them through hell. I only pray to God that this is the last surprise for a long time. I can deal with the kidney stones even though they hurt like hell, I can’t deal with my body shutting down and putting my life in jeopardy. So please, I’m begging you, don’t ignore any symptom your body is telling you, get it checked out, and don’t stop until you get an answer. I kick myself for not being more demanding with my doctors when they didn’t tell me the results of my blood work. Thankfully now I can look at my own results online, as every hospital in Toronto has an app called “my chart”. Most American hospitals have the same feature, I’m not sure about Europe, but you just register with the hospital, show them your ID, and they set it up for you so you can check all of your results, even before the doctor can see them, and they explain to you what the normal values are, and what to do if the value is not normal. Do anything and everything you can to avoid facing what I’ve just been through over the past couple of weeks. You have to be so vigilant, even though you desperately want to live a normal lifestyle, it’s not always possible in cases like mine, and I’m not alone. Anyways, thank you for listening, I pray to God I’m able to help at least a few people by telling you this, stay healthy, take care, and God bless!

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Thanks so much, but I’m nothing special, honest! I’m overly curious, because no matter what they do, I wanna know exactly what they’re doing to my body, and all the possible ramifications. Funny enough, being diagnosed with Crohn’s and then intestinal cancer was actually a blessing, a huge blessing for so many reasons. Let’s forget for a moment about the nasty things, everyone goes through difficult times, but originally I was going to start my first year at the University of Toronto studying classical music, specifically piano, and vocals, along with conducting and composition. I was a music geek in high school, and still love it to this day, BUT, I never would have considered a career in healthcare, it just never occurred to me, until I got sick, and I saw how incredibly dedicated, caring, compassionate, and even more loving, the medical staff at the hospital were, and I instantly knew I had to be a part of it. I couldn’t even start my first year of music anyways, because what was supposed to be a few weeks in the hospital ended up being four years and countless surgeries, after that was all done, and I was able to study again, it’s like a lightbulb went off in my head, and I knew that I had to study healthcare instead. So, I started off studying to become a laboratory technologist, got my degree, worked for a while, met a few friends in the hospital that worked in general radiography, and I was fascinated by it, so I went back to school and got my degree to become a medical radiation technologist, a.k.a. MRT, with a minor in physics. I had my jade parrot for approximately 13 years give or take, I need that time I saw thousands of patients, and with each one, I would share my story, even though I only had a couple of minutes, because I would have 150 patients a day, I always managed to convey my story, or at least some of it, to let them know I understood, I would even lift up my shirt and show them my scars, because I know what it’s like to be in the hospital and be terrified, not knowing what’s going on around you, and I learned so much from that, I felt privileged and honoured for the ability to pass along what I’ve learned as a patient, combined with my professional skills. Even my coworkers would comment but I never shut up, but also that I’m always the most requested employee they had, and that made me feel absolutely wonderful, and it has nothing to do with ego or vanity, and everything to do with compassion, caring, and love. All I ever wanted in life was to help people, and I consider myself so incredibly lucky I was able to do just that and actually get paid for it! It absolutely devastated me when I was forced to go on permanent long-term disability because my health became far too unstable, and I never knew when I was going to get sick. Previous to that I had a perfect attendance record, but I knew if I stayed after my J pouch had been removed, I couldn’t guarantee I’d be able to keep my commitment to the hospital and to the patients that I cared about so dearly, so I begrudgingly agreed to go on permanent long-term disability forever, but they were kind enough to give me pretty much a full salary, all of my benefits, and even a wonderful goodbye party. I’m still technically an employee, and I still come by frequently because I miss being there every day, I miss the camaraderie, but most of all I miss helping the patients feel at ease, especially the G.I. patients for obvious reasons. I’ve never been a materialistic person, and I’ll be completely honest, I don’t have a lot in the way of financial goods. Being sick often on as many as you know can be crippling financially amongst other things. I had to declare bankruptcy during my first round of surgeries, after the unemployment insurance ran out, and I had no income and no way to pay my bills. I assumed I was done with Crohn’s disease, but boy was I wrong, I ended up having to do a debt relief proposal, again, because I was just too sick to work and ran out of money very quickly. I rent an apartment with my spouse, I own almost nothing, save perhaps my car, which is essential because my parents live 60 km away, they refused to move close to the city, and I am the sole care provider, but that aside I don’t have anything in the way of materialism, and that’s OK. So many people focus on that for some reason, telling me that at my age, 53, I should have a house, money in the bank, etc., and I cannot understand why I don’t give a damn. I actually feel sorry for them, if all vacancy in life is accumulating wealth, because in the end, we must surrender it all. Unfortunately like most people I have lost many family members along the way, and I’ve helped out clearing the personal effects after they passed, and I think to myself, these people worked so hard and sacrificed so much with their free time to get these things that they never had a chance to enjoy, because they were too busy trying to get more stuff, and then I think, why in gods name do we do that?  Don’t get me wrong, I am not judging anyone if they choose to have as much material goods as they can, that’s fine if that’s what makes them happy, but for the most part, everyone that I have encountered, regret working so hard sacrificing things like spending time with the people they love most, only to have to give it away in the end, it’s not worth it, at least not to me. The only thing I care about is providing for my family, which is my obligation, something I absolutely refuse to neglect, but that aside, I don’t care about myself in that regard. As long as I have a roof over my head,  enough money in the bank to buy food, clothing, and pay for housing, then I’m good. Seriously, how much do you need? People get so hung up because it shut down our throats 24/7 from the day we’re born, but when you get struck down with a chronic and possibly fatal illness, completely changes your outlook on life. All those things are used to think we’re so important meant absolutely nothing all of a sudden, and I remain that way to this very day. As long as I can support my loved ones, and give them as much as I possibly can, what happens to me is a irrelevant. Like I said, as long as I have the basic necessities of life, the rest is for showing off, so I gave it away instead. I haven’t much to give away anymore because my monthly medical expenses are well over $2000, all things my insurance refused to cover, but that’s OK. i’m just lucky tonight I am able to afford it, because a lot of people can’t. Even the homeless who are struggling, I cannot give much money to, but I will always offer to buy them a meal or a drink, that’s not going to break me, And having been in their situation, depressed, alone, and terrified, I know that a friendly voice and something as simple as a cup of coffee to make the difference between wanting to give up or fighting another day, that’s the only thing special about me. About two years ago, almost 3 actually, I was driving along the highway at about 120 km an hour in the fast Lane, which is an acceptable speed here in Toronto, the man behind me didn’t think it was fast enough, so he tried to pull out, pass me, and then cut me off, but he lost control of his cargo van and smashed into the side of my car sending me spinning at 120 km an hour down the highway, until they smashed up against the concrete guard rail facing towards oncoming traffic. It was a miracle I survived without any major damage, I walked away from it, even the police told me after working in the job for over 30 years, they have never once seen anybody survive the accident that I had, they told me if the person isn’t killed, they are permanently disabled and paralyzed. I am a man of faith, and I swear to God, he saved me… anyways, I had to buy a new car obviously, because my other one was written off, it was a 2006 Ford 500, I loved that car, it was because it was a big car with 12 airbags that saved my life, along with a little help from above, where am I going with this? Like I said we had to buy a new car, so I went to the dealership wake up my other Ford, and purchased a new Ford edge SUV. Because I have a big family, I wanted a vehicle that can handle everything, I felt so guilty after I drove it home, I couldn’t drive it for the first few weeks. I live in a part of Toronto surrounded by homeless shelters and poverty,  and I felt so guilty having such a beautiful vehicle, as I look out the window and see so much human misery. I’m trying to describe to you my personality, and that’s the only way I know how to describe it, everyone kept telling me to get over myself, that I deserved to have it. Even though that was years ago now, I still feel guilty! But I put it to good use, heavy Christmas I put together several different campaigns to help the homeless. I run three separate campaigns out of the hospital, and I still do because I’m still considered an employee email though I don’t work anymore. I collect as much money as I can get, and use it to buy food and drink. I also collect as much sleeping bags and winter clothing as I can, and thirdly I collect food, as much as I can. About a week before Christmas, for three nights in a row, myself and several of my friends/coworkers drive through the shelter areas, and handout all the clothing and sleeping bags one night, the next night we prepare hundreds and hundreds of sandwiches, several huge containers of hot chocolate and coffee, and of course, my favorite, pumpkin pie with ice cream. On the third night, we load up the SUV with as much food as I can stuff into the back, along with two other coworkers and both of have SUV’s. It is the most wonderful feeling on the planet, better than any drug, better then winning the lottery, to put smiles on the faces of hundreds of people who are facing the worst possible time of their life. I came up with the idea, but I definitely will not take credit, because I have a small army of people that are just as dedicated as I am to come with me each night, and we actually hire a security guard just in case, to come with us, but the security guard absolutely has to be somebody who is out of work, and we give them about $500 for the three nights, depending on how much money we were able to raise. So you see, everything I just mentioned is the result of getting sick, none of this would have happened if I stayed perfectly healthy. Normally I never talk about it, because it sounds like boasting, that is the last thing I want to do. I’m only telling you, so you can see how something that is seemingly horrific can become something absolutely incredible and wonderful. If wealth is measured by money I’m at the bottom of the totem pole, but if it is measured by the amounts of love you give and/or of the amount of love you receive in return, I’ll be the wealthiest man on earth! It has nothing to do with religion, it has nothing to do with boasting or looking for attention, it has everything to do with helping those who are sick, who are frightened, alone, who need help…. The list goes on and on, and even though I’m still broke financially, who cares? I’m not going to be on this earth forever, none of us are, but while we are here, we are all travelling the same journey together, we all share the same desires, hopes, dreams, and passions. So why not share it together? I wish I could put into words how I feel, and how my friends feel, after those three nights are over. It gives you a natural high better than any external stimulant ever could, especially because I live in a neighbourhood, I actually get to see all the things we donated being put to good use, things that would otherwise be sitting on somebody’s shelf in the closet, or being thrown in the dumpster. Naturally we have everything dry clean before giving it out, this Christmas I’m going to try the up the game. I have a friend, a very dear friend, that works for a major telecommunications company, we got to talking one day and I asked him if he would be willing to offer extremely discounted or even free cellular services for a year. Rogers is the name of the company, it’s one of the biggest if not the biggest in Canada, they’re worth billions of dollars, and we’re easily willing to furnish our request. So far I have collected 276 cellular phones, the oldest one is only four years old. I put up posters all throughout the hospital asking the staff to donate their old cell phones, and I’m absolutely overwhelmed at the response so far. This will be the first time we’ve done this, because I know that the welfare department in the city hands out cell phones with a basic package, so the homeless confined work. You can’t find work without a phone number to be reached at, and I’m so happy at the response. All I have to do is bring them in a few weeks before Christmas, my buddy is going to have each phone activated with a new phone number and data plan, all for free (it’s also good PR for them as well). I’m sorry, I know I’ve gone way off topic,  but again this is all the result of me not being able to work because of my Crohn’s disease and intestinal cancer. It truly humbles you, and because of where I live, even if I don’t have the money, I had to try, and I am absolutely overwhelmed with the response of everybody, there are a lot of kind hearted decent loving individuals left in this world, again I feel guilty, because I am the one that gets to hand everything out, getting all the thanks, but the reality is it is it small army of people behind it that allows it to happen at all, I’m just the match that let the fire. Anyways, I’ll shut up now, but please think about what I’ve said, we are not helpless, and we are not helpless, so why not make the most of what we do have and share it, to show that we care, to make other peoples lives just a little bit brighter, what better thing on earth could there ever be? I am truly blessed, humbled, and just plain lucky! Thanks for listening, but I’m no hero, I’m just one guy that tries to help people from everything I’ve learned during my experiences with this disease. Just remember that to every single negative there Hass to be a positive, it’s up to us to decide which one we want to indulge in.

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