I know what you're thinking, "that girl posts a lot about Crohn's!" Yes, yes I do. You don't realize that this is sometimes the only way I can vent, raise awareness, and keep from going completely crazy. I write to let my feelings out instead of taking them out on others. Yes, my husband has Crohn's. Yes, it affects our ENTIRE family. Yes, it wears me down when he is sick. Yes, it's hard taking care of a little person and a sick adult. This is not a common cold where you're husband lays in bed and complains that his nose is running, or that he has a fever, or he needs an Advil. Let me tell you a little about this disease Crohn's.
Crohn's is an auto-immune disease, which mean's that the healthy cells are attacking themselves instead of the bad cells. No, I can't catch it, if that's what you're wondering. Everyone experiences something different with Crohn's. For my husband and many others, it causes severe intestinal cramps, bleeding, lack of life and lack of nutrition. Most Crohnie's take meds but their bodies don't properly absorb them because everything flows right through. Many people experience constant diarrhea. For us that don't have it, imagine having eaten something bad that you're body doesn't agree with everyday and having diarrhea every time you go to the bathroom. That is "normal" for a Crohnie. It's not pleasant and many have accidents because they can not get to the bathroom in time. The life of a Chronie isn't always a pleasant one. Many time their friends and family suffers because they can't go visit or they don't want to leave the house, or they don't want people to come over. There is no cure, just expensive meds that cause lots of other problems. My husband is currently on Humira, without insurance this medication (as well as many others) can not be afforded. They have lengthy hospital stays and can reach their deductibles quickly. This disease can affect both the large and small intestines. Some people opt to have part of their intestines removed and end up with an ostomy bag in various places. Other people are put on feeding tubes, just so they can receive the nutrients they need, without that they would die.
The foods we take for granted they can't. I can eat salads, fresh fruits and veggies, and fried foods. My husband can eat NONE OF THAT!!! Roughage of any kind of a no go. No spaghetti, the spaghetti sauce tears him up from the acids in the tomatoes. Limited ground beef, red meat is hard to digest for everyone, but especially hard for those with IBD. Fish and chicken are always a safe bet. We eat a lot of carbs around here. We buy stock in potatoes and macaroni noodles. Mashed potatoes and mac n cheese are always on our menu around here. Many times you fix dinner and they lose their appetite, you can't be offended by this. So much can happen between the time you start and finish dinner. You put it in the fridge and save it for later, maybe they'll eat it and maybe they won't.
Sleep for a Crohnie is sometimes hard to come by. When they are up, so are you. Sometimes I'm running bath water for him at 2:30 am. I'd like sleep too, but his health and comfort are my main priority. You can't be selfish when it comes to loving someone with this disease, if you can't handle it then don't make it hell on them. We have heard of so many divorces from this disease, because it's not pretty, it's not glamorous and it's really shitty. There have been times when I sit in the bathroom with him and rub his head or his back just to give him some comfort. There have been days where I have picked him up off the floor because he doesn't feel like he has the strength to fight. There are days when I have to remind him that not all hope is lost and one day there will be a cure. There are days when I have to remind him that I'm fighting right along side him and I'm here for him no matter what. When I said those vows "in sickness and in health...til death do us part" I meant every word of them. This isn't a disease that crept into our lives, this is a disease we've dealt with for a long time.
I don't know how else to write about this. This life sucks for all involved, somedays we're living life and other days we are just surviving. Today we are in survival mode. Today I am worn. Today I'm struggling to take care of even the smallest of tasks because sleep eluded me last night as well. If I ever meet that guy Crohn's in a dark alley somewhere, I WILL DEFEAT HIM!!! We will find a cure.
If you would care to help find a cure, please go Donate to Cure For IBD! 100% of your donation is not only tax deductible but also 100% goes to research to help find a cure. So far in 2016 we have donated over $100,000 to research. Lets triple that in 2017!!!! The man who founded this foundation doesn't sit in some fancy chair making millions while only a portion of your donation goes to research. He's out there running marathons raising awareness, and none of his marathons are funded by donations. Everything is an out of pocket expense for him. Don't wait, go donate now!
-Kourt
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