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!