About Me

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My name is Bethany, 18 years old, i live my life with Crohn's Disease the best I can and i love my boyfriend and his family and of course my family! They have been there for me through everything!

Monday, June 6, 2011

Living With Crohn's Disease- My Story

 First off I want to welcome you to my very first blog! :) Of course I will be blogging about my experiences with my Crohn's Disease and maybe other things that are bothering me, i guess we will see. 

 Well i guess i should share my story about my battle with Crohn's...just so you guys can get a glimpse of what my life is like, cause let me tell ya, it's not normal.

 I guess it all started when i was 4 years old...My mom always said I had tummy aches more often than any other 4 year old...but i don't really remember that long ago ha ha. Ive always had stomach aches and diarrhea, Ive never ever had a solid bowel movement...yeah gross right? So i just though it was normal and every ones poop looked like that! So lets skip about 10 years and get right to where i really started to notice something was wrong with me. Now my stomach aches were just getting worse. It seemed like everything I ate gave me a stomach ache! So my mom took me to a pediatrician and he did some kind of test where I drank this nasty white, pasty textured, drink. It was a Barium Swallow. The doctor followed the barium all through my Digestive system through x-ray...and what did the good doctor find..? A stricture in my small intestine, back then it wasn't that bad, so all he did was tell me to stay on a gluten free, dairy free, diet. I wasn't even diagnosed with Crohn's yet. I tried the diet for a while, but I was a young teenager then and I wanted to eat food that actually tasted good, plus even on my diet I was still in pain !! So I swayed from my diet and just ate what ever I wanted, but let me tell you...I paid for it after i was done eating. But I just thought to myself "whatever Bethany, your gonna have to live with it the rest of your life, you might as well enjoy what you eat!" So for a few years I just coped with the pain. Until just recently, I would say maybe 5 or 6 months ago I was in the worst pain anyone could possibly imagine!! I was bent over crying because my stomach pains have gotten so bad. I just wanted someone to shoot me! I couldn't keep anything down and i was rapidly loosing weight. It was time to go to the hospital. I called my aunt and she took me to the nearest emergency room, It took 7 freaking hours to get seen! But i was finally admitted. While i was in the hospital I was on TPN. Which is a bag of nutrients and whatever else your body needs to stay alive without eating. I had x-rays done and another barium swallow. The doctors at this hospital were just a bunch of BOZOS! They completely missed the stricture I had in my small intestine. The hospital I was at seriously didn't deserve to be called a hospital at all! The doctors were rude to me and said I shouldn't be in pain and they treated me like i was only there for pain medication! There was even a doctor that told a nurse that i was lying about my pain!!! What the hell is that about?? That hospital was ridiculous. One of the nurses told my mom to get me out of there and take me to Loma Linda. Well I spent about 3 weeks at that terrible hospital and they finally discharged me, and about 2 weeks later i was admitted to Loma Linda because things were just getting worse! This time the doctors weren't complete idiots and actually found the stricture! It was an 11 centimeter long stricture in my Ilieum, which is the part where the large intestine and small intestine meet. The doctors put me on a steroid called Prednisone. i was on it for about 2 weeks and it got rid of the inflammation of my intestines but did not get rid of my stricture, and I was still in a lot of pain. I had an Endoscopy and Colonoscopy done and the Biopsy said I had a lot of Scar Tissue on the lining of my intestines because of the inflammation. I met a whole lotta doctors and surgeons and dietitians and they were all saying different things to me. They would go back and forth saying they were going to do surgery, or they were going to put me on some heavy duty medications. In the end they decided to put me on medications. Well, while I was at Loma Linda I was having a really hard time trying to poop. I had a Rock solid (sorry if it grosses you out
) poop stuck, and every time I tried to go only blood would come out. I showed the nurse and she was supposed to report that to the doctor, but no one really had any concern for that and after four days of not passing a bowel movement they discharged me and sent me on my way with a bunch of medications. They didn't even make sure i passed a bowel movement after my colonoscopy was done, they just wanted to get me out of there because they had a patient hooked up to an I.V in the hallway, and needed a room. I was at Loma Linda for about 3 weeks, and still, no one got to the bottom of my problem. And to add insult to injury, i got to go home constipated. After being home for a week, I had still not gone to the restroom. I just couldn't, it hurt so bad, and i was having excruciating abdominal pain!!! Every time I would try more and more blood. Well one morning I got up to have my morning pee and out it came. After about a week and a half of not pooping it finally came out, but it came out all on its own and I was screaming in pain. And man did my bottom hurt after that! my boyfriends mom rushed me to the nearest hospital (the one i was at the first time) and we waited 2 hours, and we hadn't been seen yet, so Bryn, my boyfriends mom, rushed me to St. Joseph in Orange County. I was seen right away! I had to do another Barium swallow and they said they saw barium from the other times! So that meant there was still poop jammed in my intestines! OMG! I was so frustrated with Loma Linda that I was thinking about suing for sending me home like that. That is so dangerous!and gross of course lol Well, St. Joseph admitted me right away and instantly I had a tube shoved up my nose that went into my stomach! An NG tube...sounds painful right? yeah..don't even get me started. The tube was to take whatever was in my stomach out. So I had to make a serious decision for myself...stay on heavy duty medication, or surgery? I had already been thinking about my options at Loma Linda, but they refused to do the surgery on account of i had bad health insurance. At St. Joseph they found out I had a better insurance, and I decided to go with surgery. I was so scared, but I was willing to go through with it. Before my surgery i had more x-rays and other tests done and from then on it was a waiting game. finally the doctor set a date and time for my surgery. I had extreme anxiety and I was scared out of my mind but I tried to stay strong. My whole family was there on the day of my surgery they sat with me in the surgery waiting room. As I was laying on the hospital bed I couldn't stop thinking about what could go wrong, or if i would even make it out alive...the nurses came in and said the doctors were ready. The nurses put and oxygen mask on me and the last thing I remember was seeing these big bright lights.


 Things from here on out are really fuzzy for me...I remember waking up and seeing my mom and my grandma standing there smiling at me. I remember this pain all over my body, I literally felt like i was hit by a train. My whole body was swollen and filled with fluids and I had these weird ankle pumps on my legs to keep me from getting any blood clots. 

 Now here's the weird part, when i woke up, i thought i had 1 surgery and i just woke up the next day, but that wasn't the case. I was told I had 5 surgeries in 3 days, and that i didn't wake up until 8 days later. I don't know if that counts as being in a coma, but it scared the hell out of me and I wanted to know what happened. My mom tried to hide what happened to me but i found out by other people there and eventually my mom told me. After all she was only trying to protect me and not scare me more than I already was.

 The first surgery I had was to remove the stricture. After i was all sutured up i started to leak from where the incision was and i went septic. So i had to go back into surgery and that's when i got this fun little thing called an ileostomy placed. So now a little piece of my small intestine sticking out through my skin and i have to place a bag on it, because that is how I poop now. Another surgery was to remove my appendix. Somewhere throughout all these surgeries, the doctor sliced a major artery in my spleen and I wouldn't stop bleeding. I had to have around 25 blood transfusions because i lost so much blood. All of this is what i was told happened to me, and i guess i almost died twice. I'm honestly lucky to be alive right now. Going through the healing process was a bit difficult, i had low blood cell count so the doctor had to keep giving me blood platelets and transfusions. 

 So now it was time for physical therapy. I had been laying in a hospital bed for so long that i couldn't even walk! I was still really swollen too, so it was even hard for me to turn over! I felt like i weighed 300 lbs. Anyways, the physical therapist made me do leg exercises and made me sit up, and eventually i had to get up and try to walk to a chair and sit in it. After I did that a few times she made me walk the halls with a walker, I hadn't gotten my balance back yet so i was still a little wobbly. I was making a little progress...but then things went wrong again. Everything went black and the last thing that i saw was my 12 yr old sister at the end of my hospital bed with her hands on her face looking at me crying. Then everything went black again. I woke up In ICU and that was probably the 5th time i had to go back. I was in and out of ICU because of all the things that had gone wrong with me. Well, i found out I had 2 seizures. What makes it even worse was that my 12 yr old sister and 5 yr old brother had to see that. It still saddens me to this day that they had to witness that...After the seizures I spent 3 days in ICU doing detox, I was told that i was shaking a lot and couldn't sit still. The doctors also discovered that i had Cdif, which is a contagious infection. So everyone had to wear protective robes and gloves if they were in the room with me. After I had the seizures i was taken to get an MRI, it showed that I had fluid in my head. The doctor said it wasn't dangerous, so that was a relief. I cant really remember much after that, but i know i was doing better and I was starting to heal faster. So after that I was just waiting to get discharged. They put me on a regular diet and everything! No more TPN! yay. It had been so long since i got to eat real food! 

 I got discharged and for a few weeks I had in home care. So a nurse would come twice a week and make sure my wounds and my stoma were being cleaned and taken care of. I would never let the nurse do it because they rip tape off and hurt me so I just always did it myself, and i was doing a good job anyways! So one day a nurse came and said that i was being discharged because they weren't doing anything and i was doing just fine on my own. 

 So here I am now writing this blog about everything I remember about my hospital visits. Hope you find it interesting and can relate! I will have more blogs up soon enough about my experience with Crohn's Disease! and other stuff :)           
          

3 comments:

  1. I am so proud of you for writing this. I love you!!

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  2. ohh my god bethany !! You are one of the strongest women i know <3 we've known each other since middle school and after reading this and talking to u i can say ur honestly my hero !! youre amazing girlyy and soo strong never stop fighting <3 love you , and u will always be in my prayers <3

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