I know. I know I have been missing. depression has consumed me therefore I am blocked. as a writer, as a person… As a matter of fact, as a functioning human! I will be back, I promise. I have so much to let out, so much that has sent me spiraling downward into a pit full of angry sharks. I love sharks but I doubt that they would even want to deal with such a troubled soul such as myself. Let me compose myself, gather my thoughts, organize the destruction in my mind and I will be back, I promise. Until then, every one stay safe. I hope every one is doing well.
I’m going to provide a breakdown of the procedures that I have had and everything in between. It has been a rollercoaster of hospitalizations, surgeries, complications, and endless bad news since day one.
January 16, 2015: My first surgery. The removal of my colon and rectum, the creation of the J-Pouch, and the creation of the of the loop ileostomy. Recovery time in the hospital, 8 days. Recovery time at home, never… lol
This ileostomy (which I had named Pooh Bear lol), gave me so many problems, I wanted nothing more than to rip it off my body. The intestine would swell causing extreme blockages and I would end up in the emergency room, admitted to the hospital, and severely dehydrated, at the verge of death. I would have to catheterize, meaning I had to insert a catheter into the stoma myself, in order to open up the intestines that were sticking together, to make way for the stool to pass and clear the obstruction. The worst memory that I have with this ileostomy was one week after I came home from the hospital. I had my first obstruction, my first near death experience, the emergency that caused the worst possible trauma with my ostomy. I lived with my son and his father, my boyfriend at the time, and my sister and best friend came to visit me along with their spouses and children. Through out the entire day, I had very minimal output, which means that I was not eliminating waste as I should have been. Everything that I was eating was getting stuck inside of my intestine and I had absolutely no clue. Come night-time, the pain started. It’s difficult to describe but it felt like very strong labor contractions. Super enhanced contractions, like the kind that made me wish I was giving birth all over again because at least those pains were a piece of cake compared to these. Heck, I would prefer to pop out 17 more kids, one after the other, non medicated, instead of this feeling this obstruction pain. By the end of the night, I was on the floor, screaming at the top of my lungs, and begging my sister not to take me to the hospital. I knew at this point what was happening, I had spoken to my surgeon and he told me to immediately go into the emergency room. I refused; and I regretted it an hour later. I didn’t want to go in because I didn’t want to be hospitalized and spend anymore time away from Aaron. But I should have gone in as soon as I was told because what he saw and the condition that he saw me in, traumatized him as well. And then, the vomiting began. I’m talking about exorcist style, non stop, where the heck is all of this food coming from, vomiting! Because if it’s not coming out the way that it should, it’ll go right back up the way that it came down right? After vomiting my life away and having nothing left in my body, I fell unconscious and all I can remember was being carried out into the cold air, in to the car, and rushed to the hospital. The moment that broke my heart was when Aaron came near me with nothing but fear in his eyes and a shaky voice… “mommy are you going to die?” Holy fuck did that crush my soul. By the time that I reached the hospital, the obstruction cleared on its own. My boyfriend at the time, drove like a maniac to get me there before it was too late and he succeeded. The bumpy ride, the pressure of trying to continue vomiting, and the position that I was laying in, pushed everything through, so when I got there, I was out of extreme danger. God was definitely on my side. If the obstruction wouldn’t have cleared, that night would’ve resulted in emergency surgery or extreme dehydration and eventually death. I was admitted and I spent a couple of days away from Aaron; which is what I was trying to avoid. But that heart aching question, that worried little voice, helped me realize that I have to take care of myself even if that means going back to the hospital. After this, it kept on happening. Obstructions, vomiting, emergency room visits, pain, and the shattering of my self-esteem, my hope. My surgeon decided to schedule the reversal surgery sooner than planned, way sooner. But it was only because this ileostomy was causing major complications. So my second surgery was scheduled for February 27, 2015. Just a little over a month after the first one, and I could not be more freaking relieved at knowing that this God awful DEMON OSTOMY was finally going to be removed. I despised it, I was scared of it, I did not want to hear about an ostomy for the rest of my life. I was mortified with it… it had to come off!
February 27, 2015: My second surgery. The reversal of my ileostomy, the beginning of my J-Pouch journey, learning to use my butt again, the happiest surgery that I ever had. Recovery time in the hospital, 8 days. Recovery time at home, 2-3 months… Until shit hit the fan (literally) and I discovered that I wasn’t in fact healing as I should. During the recovery period after this surgery, I felt amazing! I was invisible what with my new butt and everything. I went on vacation, engaged in social activities, began working out again, and began preparing for my return to school. Although I knew that I had to take it easy, I do admit to moving a little fast into “normality”. I was just overly excited with how great that I was feeling & I pushed my limits. Then, some time in May, I began experiencing a bit of pain and difficulty during bowel movements, I ignored it for a while longer and figured it was probably my body still adjusting to my new “system”. Until one particular incident one day, convinced me to go back to my surgeon and demand examinations over the sharp pelvic pain that would leave me gasping for air. I was home all alone one day and I recall sitting on the toilet while crying hysterically because I was in excruciating pain. I honestly didn’t think much of it, until the medical exams came back positive for intussusception (the folding of the intestine back into itself) and surgical adhesions, which were blocking my intestine from passing waste correctly. (Story of my life lol) This meant, surgical repair. So there I sat, in my surgeons office, suddenly discussing and scheduling surgery #3 for July 10th, 2015.
Honestly, this shit is weird. Recovery is just taking forever & as I’m getting impatient, all I can do is wait & embrace it… right? Right. Well, every time I move my left arm, i feel the damn thing move & it still hurts so this really blows. I can’t fully lift my arm yet therefore I am not driving. Plus my symptoms suck because I get all dizzy & drowsy since I’m occasionally taking pain killers. I really didn’t know recovery was going to take this long. Not to be a Debbie downer but UGH! The device sticks out of my chest & is very visible & although it doesn’t bother me, it’s still a reminder of my condition. As if symptoms weren’t reminders enough lol -_- The scar is just another addition to my battle scars which I actually appreciate. & don’t get me wrong, I appreciate this device because it is helping to keep me alive basically, I’m just taking a while to adjust. It’s very heavy & when I move, I feel it move so I’m like “ahhhhhh beheodekeijcnejfnrhwkwkjfbwkshdhf” every single time! This is me … & I introduce my new internal little buddy, Bumblebee 😊
(Can you tell I’m a Transformers fan?)
Hello my lovely bloggers. I want to begin by apologizing for my long absence. In my last post, i was in a gastroenterology appointment and while I’m glad to say that my symptoms are being controlled with medication, another medical contion has worsened. I have Congestive Heart Failure which is “controlled” by medication. I was diagnosed in 2015 & I take 3 different medications daily to help me get along. Heart Failure has no cure, only treatment therefore, my day to day lifestyle can be very challenging. My symptoms are very strong. Fatigue, shortness of breath, chest pain & pressure, edema, fluid build back, dizziness, fainting, etc. Some days are better than others, some days I feel as if I’d been punched in the chest, struggling to breathe, panicking for air. I sleep in a sitting position because laying flat causes shortness of breath, & I take breaks between flights of stairs. Pretty annoying when you’re 25 years young & can’t play tag with your 5 year old. My Ejection Fraction is a low 35% while a normal EF is 60%. Ejection Fraction measures how well your heart functions. While a low EF can have many causes, mine are caused by cardiomyopathy (a weak heart) & systolic heart failure (the inability of the heart to pump with enough force in order to push blood into circulation all because the left ventricle of the heart cannot contract normally.) Being that I am extremely symptomatic & my medication is not helping enough, my cardiologist was concerned enough to send me to a cardiac specialist. While we cannot find the reason for my heart failure, he educated me on the severity of it; the high risks of sudden death & cardiac arrest. While sitting there scared shitless, I knew what was coming & I knew that I had gone to the right person to determine my next step. I agreed to his plan, difibrillator/pacemaker implant surgery. A defibrillator helps & tries to prevent sudden death in case I go into cardiac arrest. It will shock me & hopefully save my life while a pacemaker tries to control my heart rate so that it cannot be affected my any dangerous arrhythmia that I may have. A patient can either need one or both but in my case, I needed both. So there is a small battery dependent device that is surgically implanted in my chest & is connected to a wire that goes all the way through the main artery into the very bottom of my heart. Crazy right? It’s been about a week & a half since the surgery & here I am, back home from the hospital & in recovery mode. I spent about 6 days in the hospital but thank God, all has gone well & slowly but surely, I’ll recover from this procedure just like I have from my previous 7 surgeries. I’ll explain more in my next post about what it feels like to have this device because it sure is freaking weird. Needless to say painful & inconvenient because I can’t move my left arm for a month! Again, I apologize for my absence. Once I found out, I got lost in my thoughts but couldn’t seem to let it out. I would try to type but I couldn’t believe what was happening & I didn’t even know how to espress it, how to process it all. I’m still a little in disbelief but I have way too many feelings to keep them boxed inside. I’ll be back soon with details & perhaps a picture or two because oddly enough, you can see the damn thing through my skin. (I know, ick!) I don’t have a name for it yet but I’ll work on that in the mean time. Thanks for listening guys, or should I say reading? It has been a stressful couple of weeks. I hope all is well with all of you!
My first diagnosis was in September, 2014. “Colonic Inertia” is what my doctor said I had. No idea what that was, but I finally had an answer. I had spent several months, almost a year, in testing and trial medications. I was growing more anxious by the day due to my symptoms, and the many doctors that said I was fine and that it was just “stress” related we’re just adding to my worries. Why couldn’t they find the cause?! The severity of my symptoms increased over time and after a while, they became chronic. It started off as mild constipation. A day without going to the bathroom, turned into days, then eventually weeks. 3 weeks without a single bowel movement and you’re going to tell me that it is related to stress? Of course I was stressed, I couldn’t go! I finally found a gastroenterologist that wanted to actually help me. The fact that im young convinced doctors that they should not continue treating me because they assumed that at my age, nothing serious could occur. WRONG. My current doctor found that I had a transit disorder in which my colon stopped working completely and would not allow stool to pass, which resulted in bloating, pain, and extreme vomiting episodes. This all began after I gave birth to my son about 5 years ago but as I mentioned, the symptoms worsened over time. In 2013, I went back to school and boy did I love it! I was obsessed with school and I would never miss a day. But I will never forget having to walk out in the middle of class to go find a bench somewhere and lay in the fetal position in excruciating pain. I would wait it out, for about an hour or so, but I would refuse to leave school. It was definitely interfering with my life as I would have to hand my son over to the person next to me so that I could drop to the ground and wrap my arms around my knees to wait for the pain to stop. Happy they found the problem? Of course… Upset at the treatment, very much so. I was told that my colon and most of my rectum had to be removed. A two-step surgery in which they would create something called a J-Pouch in order for me to function somewhat “normally” again. A J-Pouch is created by using the small intestine and then connecting it to the small part of my rectum that was left thus, allowing me to go the bathroom as the average person does. During the first surgery, the J-Pouch is created but needs time to heal. In order for that to happen, an ileostomy is created and becomes the main method of emptying the bowels. Or should I say bowel, haha. An ileostomy is when your small intestine is taken out through your abdomen and covered up with a disposable and drainable pouch that collects the body’s waste. There are different types of ostomies; Ileostomy which is made from the small intestine, Colostomy which is made from your colon, and Urostomy which is used on patients who are unable to urinate on their own. The ostomy can either be permanent or temporary but mine was temporary as it allowed my small intestine to properly heal without the interruptions from the bodys daily functions. My gastroenterologist referred me to a colorectal surgeon from Mount Sinai and after my first visit with him, he scheduled me for the first surgery. I was forced to withdrawal from school and I spent the holidays sobbing into my pillow because I was afraid. Afraid of everything because with my luck, everything always goes wrong. I am the youngest out of 5 and probably the most spoiled so my parents were crushed when they found out that I needed this whole procedure. I was probably the first one to undergo such complicated surgeries but the part that really sucks? I was right about everything going wrong. Anything and everything that one can possibly imagine, happened after surgery. But I will leave that for next time. Honestly, all of these memories still cause a bit of anxiety. I guess it’s the dates to be exact. The fact that it has been two years and my health has not improved. Instead, more complications have risen and as strong as I have been, I admit that I still want nothing more than to just give up. I’m actually at a medical appointment as I type, in the middle of a 3 hour test. Story of my life…
So I’ve got this hat on today and it always makes me feel pretty. Especially during dreadful doctor appointments like the one that I am currently in. It’s a gastroenterology visit and I’m screaming on the inside because I never walk out of here with good news. Fabio is doing fine so I know that everything is alright in that department. But I’ve got a pretty concerning esophageal hernia that has been giving me quite a hassle so I’m here to see what’s up with that. I absolutely hate these appointments but I’ve got my boyfriend right by my side and my awesome hat so I’ll be okay. I wanted to let you guys know about the book that got me through some of my most important medical appointments. This was back in 2014 when my doctors were trying to figure out what was going on, right before I officially got diagnosed. It’s called The Art Of Racing In The Rain by Garth Stein. But holy moly, I warn you… CARRY A BOX OF TISSUES. And if you’re an animal lover? Just crawl under your blanket with 3 tubs of ice cream, hot cheetos, and a nice bottle of red wine while you read. It made me laugh, cry, and feel emotions that I hadn’t felt before; but it got me through those tough appointments and I highly recommend it. In fact, I insist! And while you’re at it, get yourself a cute hat. Toodles, I’m up next!
I have so much to share that I even blanked out just now. Where to begin? Well, I’m 25, I have a soon to be 5-year-old son, and I’ve got a Fabio. Fabio is my ostomy. But let’s make one thing clear, WE DONT LIKE HIM. OKAY? Okay so, for those familiar with it, yeah… it sucks. For those who are not, lets just say it’s kind of odd. No, scratch that, it’s very odd. My small intestine is sticking out of my abdomen. Yup, just hanging out there, budding into business it does not belong in. Long story short, my colon was removed two years ago so I don’t necessarily function like the average person does. I was in total shock when I found out that this medical procedure was even possible. Removing such a major organ like that? WTF?? But I have to admit, it has saved my life… MANY times. I am starting a blog because I have so much on my mind. TOO MUCH. My life differs from those around me and I don’t personally know anyone with all of my medical conditions therefore it’s hard to express myself to my loved ones. Although they are very supportive, I sometimes need to vent wanting absolutely no response at all. I warn you, I’m an emotional wreck and I have more bad days than good ones so I have a lot of “FML” moments to share. I don’t sugarcoat anything because after all, I am writing about my life. My experiences, my feelings, my struggles and it all sucks, big time. But that is the beauty of being open to writing about my story. I hope to inspire and possibly connect with those who are ill and have difficulties dealing with it all. Know that you are not alone and there are many of us who have that cloud over our heads as well. Buy hey, we’re alive right? Kicking and screaming but we’re here. I wont get into detail now because truth be told, its 3 am and I have a headache the size of my extracted 6 foot long colon (the average colon is about 3 feet long… I know, gross); But I will explain who I am and what my life is about the next time that I’m here. This blog will be about illness, family, love, and my battle to cope with it all. We all have our clouds but like I said, we are still here for a reason. Until next time guys, off I go for a coffee break.