I want to first off by saying I am Mahdy El-achkar. I am 18 years old and a victim of Ulcerative Colitis. I was diagnosed on December 31, 2010. I've have also been in a nonstop flare-up the past 6 months and have been in and out the hospital for 2 months almost. My longest stay was from October 29th, 2012 - November 22nd, 2012 and then February 1st, 2013 - February 5th, 2013
I wrote this story when my "two year" mark hit. I hope you guys read and enjoy. I've shared this all over the internet with my friends and close people.
I wrote this story when my "two year" mark hit. I hope you guys read and enjoy. I've shared this all over the internet with my friends and close people.
Today, December 31st marks a day that changed my life. Today marks the second year I've been diagnosed with my stomach disease; Ulcerative Colitis. I was diagnosed December 31st, 2010. Two years ago, I never thought I'd be the person I am now. This is a story I wrote.
There was once a boy who loved life. This boy enjoyed every second of it. From the morning, to night. 2010 and this boy entered a new school. Worried about making friends, ''fitting in'', getting along with everyone. The normal thing average high schoolers worry about. His junior year of high school. Two months went by and basketball season came around the corner. His brother introduced him to the coach, who then liked this boy a lot. He liked his skills, his attitude, his personality. He made the team, excited, ready to make new friends and show
everyone what he, this boy is capable of doing. First day of practice came and it was the worst day ever. This boy was constantly running to and from the bathroom. Having nothing but diarrhea and bloody stools.Weeks and weeks went by and this continued to happened. Finally, he saw a GI (gastro intestinal) doctor. Winter break came and that doctor scheduled him for a colonoscopy for December 31st, 2010 at 4PM.
That day came. Worried and nervous, not knowing what will happen. Just the words "you have a stomach disease" can change someone's life forever, he thought. After two hours he woke up, loopy from the anesthesia, he saw his father sitting down with a worried look. Not knowing what was happening, the boy lifted his hand up and shot his father with his hand, trying to get a smile on his father's face. He then asked the question, "Dad, do I have a stomach disease?" "Yes, son" was his answer.
Not knowing how to deal with this, not having any ''friends'' by his friend, he was scared. He felt alone. He asked and cried to god, telling him why it had to be him. What did he do to deserve this. He never knew what the future held in store for him. He never knew anything of this disease. All he knew about was.. Well, it was a disease. January 6th, he had an appointment with his doctor. His doctor told him what he has to do. His doctor prescribed him with a bunch of medication. The thought that he'll always need to take so many pills a day crushed him. He was taking around 16 pills a day, all for a stomach disease. None which helped the pain.
Months and months went by, it was always the same thing. Stomach pain worsens at night, nothing anyone could do or say to help. Countless sleepless nights. Not knowing if he'll ever get better or not. Prays to god with no reply, has faith that one day, maybe someday soon, everything will get better. Remarkably, it did. Months went by where nothing effected him at all.
Senior year of high school. Went by in a jiff. Nothing effected him. His stomach disease never flared up once. And he thought it was all over with. This boy thought he'd never have to worry about the pain, or not eating, or not sleeping, or anything. Sadly, he was mistaken.
September 24th came. He went to the bathroom and saw blood. Shaking nervously, he broke down. After a full year, it's happening again. He knew this was just the start. He knew it was not going to end anytime soon.
Every other day his symptoms would change. One day it'd be all fine, the next day it would be diarrhea all day and night. He didn't have a doctor since he just turned 18, he needed to find a new one.
His problem? He had no health insurance. Day after day it was getting worse. October 28th during the night time was when it became a real issue. Every 3 minutes, he'd have to run downstairs to the bathroom. Bloody stools throughout the whole night. That's when he had enough and went to the ER.
He stayed in there from October 29th until November 6th, hoping it was the end. They discharged him with no pain medication. First day he got home, he couldn't walk, eat or move. Worried about missing days of college, worried about if he was ever going to get better or not. Everything worried him. On the 8th of November, symptoms continued to get worse, so his pediatric doctor told him to go back to the ER, and so he did. He was there from November 9th-12th. Everyday and every night, he was still praying. Still holding on faith that one day it will all get better. When he got discharged, he thought it was the end. He thought this time, it will all be better. Again, he was wrong. His appetite dropped, he wouldn't eat. November 15th, he came home from college at 6:00PM. He told his mother he's in too much pain to go to his last class tonight. She looked at him and said "Look at how pale you are, you need to eat". "No mom, I'm not hungry". "Mahdy, you need to eat something! Look how much weight you lost!" "Okay then make me grilled cheese please". Soon after she made him food, he took one bite, and immediately had to go to the bathroom. Right when he was done, he got up, tried walking out and began to feel really dizzy. He then screamed "Mom, hass!" (his brother's name) and fainted. Hit his head on the floor and blacked out. His mother called 911 and the ambulance rushed to his house.
Finally, while in the hospital he saw a new GI doctor. This GI doctor does not accept the Medicaid this boy was on, but he said "Listen, I'll take care of you. I don't care if you don't have insurance or if your insurance doesn't cover, I'll take care of you". All the medication this boy was taking weren't working, he needed a special infusion treatment which costs $8,000 per treatment. Without insurance, this boy couldn't get it. The doctor made a promise and committed to it. November 16th at night, the boy got this treatment while in the hospital. He stayed in from November 16th- 22nd.
21st of November came and he had another colonoscopy. The results came out he had "Severe Ulcerative Colitis". This means that the symptoms would be 10 times worse.
Why? Why him? Why must he always struggle? Why is it when one thing gets better, another gets worse? Why can't he just get better and remain better. Why must something new always happen?
The days went by and again, the pain would be unbearable. Everything would hurt more. Every other day he would have diarrhea. Lucky, he had pain medication to take during school times so his symptoms wouldn't be too bad.
College soon ended by the blink of an eye. He was supposed to get his second infusion treatment on November 30th, (Exactly 2 weeks after the first treatment)
The day he was supposed to get it at 8AM he gets a phone call from the cancer center at the hospital and Sue said, "Mahdy, your health insurance is not paying for the Remicade. You can't get it today unless you pay for it up front" "What are you talking about?" He said frustrated, "I NEED this treatment I'm getting worse I NEED IT I NEED IT!" He said shouting on the phone. "Mahdy, there is nothing I can do you just have to wait till we get a hold of your insurance company"- Frustrated, he threw his phone across the room and broke down in tears. He asked god "Why? When will it be enough? How much longer will he have to suffer?" December 11th, he finally got a call saying his health insurance will pay for the drug treatment. December 14th was his appointment. And he thought it would be better after he got it. And he was wrong, yet again.
What happens now? Now he suffers with severe stomach pain. Now whenever he wants to take his pain medicine, his brothers and ''family'' accuse him of being a 'pill popper', a 'drug addict'. Every night its the same pain. Every morning, its the same diarrhea. It's a never ending cycle. Nothing will change. This pain can put a grown man into tears. Now this boy does nothing but try to fight. Fight what? Fight the fact that his own mother wishes he gets stomach cancer, or the fact that his own brothers call him a failure. They're right, he is. He is a failure. He's 18 with only a few real life friends. His own brothers would rather hang out with their best friends than with him. They are right, he is a loser.
This stomach disease changed him. He now sees life at a different perspective. He wishes one day someone really cares and asks "How are you feeling today?" When they do ask, he says "Fine". When in reality, everything is worse. He doesn't like to talk anymore because people tend to make a mockery of whats going on. People think the suffering of others is funny. If its anything this boy learned, its how to really trust someone and not get hurt. He still prays and prays, that one day this pain will all go away. Not just the pain, the diarrhea. Not just the diarrhea, the sleepless nights. Not just the sleepless nights, the people who judge him. All he wants is to be loved for who he is, what he's done, and what he has become. What he goes through on a daily basics makes him breakdown at the end of the day. But what does he do? He keeps it inside of him. Not because he wants to, but because he knows deep down, people don't really give a fuck. People say they do, but do they really? Who knows.
They say be grateful for what you have, for others have it worse. He's grateful for the home over his head, the family he has, the food he can eat, yes he's grateful for it. But if so many people say to him "you're such a great person", then why must he suffer this bad? Why must it be a never ending cycle of complete misery? Will he ever be happy? Will this ever go away? Sometimes he feels its god punishing him for not being a good person in the past. We all make mistakes, but does he deserve to be punished for this long? He just wants to put a real smile on his face. Not a fake one. Not a smirk, but a smile of joy. He wants to be able to eat a full meal without having to use the bathroom afterwards. He wants to sleep a night without either waking up full of sweat, or just go to sleep period. He wants all this to end. 3 months. 3 straight months of pain, losing weight, losing blood and it has not ended. He often wonders if this world would be better without him. He knows his family would do better. He knows the pain won't be there anymore, but neither will he.
He wishes one day everything will change. When? He doesn't know. No one knows. But what he goes through, its not easy. It's hard. And with school coming up around the corner, he doesn't know what to do. He's scared and not afraid to admit it. He cries every night. What would you do when it feels like someone is constantly stabbing you in your lower right abdominal? What would you do when you have to wake up at 8AM just to have diarrhea? What would you do, when the only time you can sleep is when you take a blunt to the head? What do you do when you live in a life you hate? Not because the people, but because the shit you've been through. No human being should ever go through what he went through, what he's going through, so why must it be him?
"It's been a long two years, I can't change the past,
I've shed so many tears can't believe I lasted this long.."
Do you still have insurance and are you still on the Remicade infusions? Are you seeing the GI doc on a regular basis and what do they have to say about the continued symptoms? What type of foods are you managing to eat at the moment?