Living with Ulcerative Colitis

this entry is lonnnng over due, but every time i think about sitting down to type it out i know its going to be long and way too thought out so i don’t write it. to sum up everything about my “invisible illness” here we go!

i was diagnosed back in august of 2010. i was living in Arizona at the time. i initially went into the hospital for a blood transfusion. i was severely anemic. a normal hemoglobin range is usually between 12-17. i was at 2 i think. hemoglobin are molecules in your red blood cells, when you’re anemic, the iron levels in your blood are lower than a normal person. obviously being a woman there’s ways each month that you would lose a good amount of blood. one symptom of severe anemia is being light-headed. there were times that i would almost get to the point of blacking out if i over exerted myself. anyways a few days before i was told to come in for the blood transfusion, i had an excruciating sharp pain in my left side. i couldn’t sit, stand, and breathing was hard. i thought maybe i had pulled a muscle as i worked at a bakery at the time and we were always lifting crates of cakes, pies, pastries, etc. i drive myself home from work (barely) took some Advil, and was finally able to lie down to nap. the next day i went to an urgent care center to have a xray done to see if i had in fact pulled a muscle. they also did some blood work. ok now back to the original story…..however all of this ties into how i was diagnosed with colitis so i kind of have to throw in some extra parts for it to make sense. lol

i was at work when i got the call from the urgent care place that my hemoglobin was super low and i would need a blood transfusion. i was thinking ok. i called my mom to let her know and i was gonna put it off till the next day. she told me i needed to go right then and there. when i got to the emergency room and told them i was told i needed a blood transfusion, they stuck me in a temp room. typical ER stuff. ask you whats wrong, and why you’re here. take vitals, etc. i also mentioned to the ER doc about the sharp pain in my side and also that i had blood in my stools (which had been happening for a few months now). i forget what he said but they wheeled me up to a room to start the transfusion. it took about 6 hours i believe. the next morning i was scheduled for a CT scan with contrast, and a few days later would have a colonoscopy and endoscopy. if you’ve never had a CT scan with contrast before let me tell you that when they say it feels like you are gonna pee your pants, they are not lying! i was super nervous because i thought it was going to be scary. also my parents live in california, so i was taken to the hospital by my ex bf and his mom who i barely knew. after the CT scan was done and it took a bit for the results. the doctor told me that the excruciating pain in my side was caused by 2 blood clots in my lungs, and that if i had not come in they could possible have ruptured, and that would’ve been fatal. GREAT!! i was on birth control for many years and so they ruled that out as the cause.

so lets fast forward to D-Day, or should i say C-Day (colonoscopy day. lol) the day before i was given a huge jug of nasty stuff to drink to clean me out for the colonoscopy. oh also when i found out i had blood clots my bf’s mom called my parents and they drove out that day to be with me 🙂 love them so much!!! it takes about 30 mins to an hr for the medicine to start working and when it does, you are literally going to the bathroom every 15 mins. but im not gonna lie that even when all you eat and drink is jello, apple juice, water, and broth, there’s no better feeling than knowing your all cleaned out inside. lol. that sounds weird. so since i was having an endoscopy as well i was super scared that they would numb me up and shove the camera down my throat while being awake. luckily i was knocked out! after the procedures i was in the recovery room before being wheeled up to my room. i forget how long it took for the results but once i got them the doctor told me i had ulcerative colitis and gastritis, however the gastritis was minimal where the ulcerative colitis was major! that explained why i was super anemic, and had stomach issues for a while. a nutritionist came to my room to give me info about my colitis as well as some foods that would help my flares, and make them worse.

i was in the hospital for about a week. they had to wait for my INR level (just means the higher the # the longer it takes for blood to clot, and the lower the # the faster) they wouldn’t release me until i think i was at an 11 or 12. once i was released i was given Asacol to take for my colitis. it worked well for me but my insurance stopped covering it so i switched over to Lialda. I was on Lialda for a few years. when i moved back to california in 2012, i had a difference insurance (Kaiser) and unfortunately Lialda wasnt on the list of mesalamine drugs. i was given some generic one that was in their little network of medications (the only reason i dont like kaiser is you cat get drugs outside the network) that medicine didn’t work at all. i was also given a mesalamine enema to take which did nothing.

i moved out here to Hawaii in october of 2012. right before then i was flaring up and having issues. right after i moved here my symptoms seemed to go away. but then they came back. i guess you could say i was in remission for a little while but now im back battling my colitis all over again. some days are better than others, and since moving out here and trying all different kinds of medicine i am now on 1x daily Imuran and Remicade every 8 weeks. i get flares every now and then, but i have been consciously watching my diet. i will get into that in another post.

so yeah that’s basically my story of being diagnosed with ulcerative Colitis. it’s a battle i will never stop fighting, and i just hope to get back to remission again!


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