So what's it like to have Severe Crohn's?

What is it like to have a Chronic illness? Let me give you insight into what it's like to have Severe Crohn's.

It sucks. It sucks because people don't believe that you are sick because they can't "see" the illness. They don't see you suffer... Physically, Mentally, Emotionally. They don't see the painful inflammation in your intestines that causes bloating, upset stomach, gas, ulcers, bleeding, nausea....
They don't see the countless trips to the bathroom,... the anxiety of having to eat and knowing you will feel sick every time because of it.
They don't understand the pain of eating, the stomach cramps, the embarrassment of having to excuse yourself right after a meal because you are nauseous just from consuming food.... of any kind.
They don't understand the feeling of constant urgency and fear of urgency to use the restroom. Imagine when you've had a stomach bug, how you couldn't stay out of the bathroom, ... everything you ate upset your stomach and you felt weak. Imagine this on an Everyday Scale. For the rest of your LIFE.

Now Imagine having to be diagnosed .... meaning many doctors visits, needles prodding and poking you, Doctors "Examining" you.... (more probing) then pressuring you into "Colonoscopies" and medicines that are rather questionable. Now after being diagnosed, you are told this is a DISEASE you will have until you DIE. You will have to Live with it for the Rest of your LIFE. You can't just take some Medicine and it goes away. No.... it stays. You work around it. You explain to people Why you can't go certain places or can't make lunch dates, but they always assume it's because you are blowing them off.... when in reality, you are wore out from doing chores around the house the day before, or you ate something that tore you up the night before and now you are too dehydrated and weak to get out of your bed. It will take several days, if not a Week to recoop. But you have to keep going because it is expected of you.

Imagine what it feels like to not have the energy to play outside with your son and run around catching a ball because you ache constantly and are so exhausted, you have to sit in a chair and watch him play. He is growing up before your eyes and your body has bound you to a quality of life that limits the interaction with your child. How do you tell your child that you can't go to the park because there are no bathrooms? No benches? No place out of the sun? We make sacrifices for our child to see them happy and we plaster a smile on our face like a mask so our child doesn't have to see our suffering. Imagine being so anemic and dehydrated that you can't do anything but Sleep all day, all night.... too weak to go from the couch to the bathroom without passing out. Then you finally end up at the hospital for a week to get a blood transfusion, 20 bags of IV antibiotics due to being almost septic from a fistula that was abscessed because of the Crohn's.

Do you know what it's like to have your child see you so close to death on many occasions that he won't let you out of his sight because he's too afraid that something will happen to you? Do you know what it's like to have an 8 yr old experience that kind of worry?

I have had bowel disease since I was diagnosed at the age of 11. I have been through hell and back ... but no one knows because I just don't tell anyone about it unless they ask and even then, I don't go into too much detail, because their interest is lost. But today, I want to inform people what my life is like. I am only 33 years old and I am on a Chemo Class drug that has the potential for me to get Cancer. Guess what? I have a spot on my arm that I have looked into myself, and I do believe it is a cancer spot after the research I've done. I am at a point in my life that my Quality of life is really SUCKING right now. The Remicade makes me ache, have brain fog, makes me exhausted all the time, among other things. Plus, you have to have constant blood work done to make sure certain levels are fine and not getting unbalanced.

Imagine what it feels like not being able to hold a REAL job and make money to be able to contribute to your family. Imagine racking up thousands of dollars worth of medical bills that in turn brings down your credit score. You begin feeling like a waste of space, a human money pit.... you begin to question the meaning of life since it's quality is so poor at the moment. You daily fight with the feeling of not belonging simply because you feel like crap on a daily basis and people who say they care don't really get it and write you off.

Imagine what it feels like to be trapped in a body that betrays you and your immune system is fighting with you. You have to be put on medicines that ruin your hair if not make it fall out, medicine that makes your teeth rot, your hands rough to the point that No lotion actually helps and your loved ones get scratched when you touch them. Medicine that makes you gain weight, only for people to ask "when are you due?" ... Medicine that damages your eyes,.... your liver.... constant headaches, body aches,..... and all of this Just to keep the "Symptoms" at bay. At Bay.... Not healing it, just ... survivable.

Life is not fun when you are just Surviving. It's a living Torment.

I am sure people have judged me and written me off because of it and I've gotten to the point where I don't care anymore. I have learned that I have to do what I have to do to keep me alive for my son and my husband. My son and my husband need me more than anyone else on this planet and I've come to the place in my life that I finally have to put My health First so I can live to be 70 & 80 years with strength..... I want to see my son grow up. I want to be more active in his life. I don't want to be on the side lines anymore. I want to be a better mom and a better wife. I don't want my son and husband to see me cry from frustration at not being able to do more than I can right now. It's a fight for them as well. They have seen my suffering, they have seen my tears,.... God has heard me cry out to him for help.

This is my life. This is my daily struggle. This is why I need to move to CO so I can ENJOY life again.

I am not going out there to be a "Pot Head". I am going out there to be a Cannabis Refugee. I am going out there to use a plant that GOD created that has multiple healing qualities so that I may Enjoy the life he has given me, Not just merely Survive. I have had enough "Survival" and I'm ready to take back my life... to stop Suffering and to begin Thriving.

"Life"... such a word taken for granted.

And yes.... this was an extremely difficult decision. I will be leaving behind my parents, my brother and his family, a dog, a cat, my son's birth place.... I have been on an emotional roller coaster because of all of this... but this is the best decision for me and my family.
But keep in mind, I am only moving a few states away, not 6 feet under. I am only a phone call away,.... a letter dropped in the mail, a text, a plane ride away.