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!
Monday, December 05, 2016
You see I sit here a week before my husband has a colonoscopy, and I'm scared. I'm not scared because they are putting him under, I'm scared of what they will find. Oh you shouldn't be scared you say. Well, you see, my husband has Crohn's, I've posted about it here before. It's nothing new, but every year it's changing. The disease is progressing, the treatments aren't working, he's miserable, and that's his new "normal." Normal to most of us is living life, having fun, visiting our friends and family. To someone with Crohn's thats not normal. Normal to a Crohnie is staying home, not going anywhere, spending countless hours on the toilet every day, sleeping a ton, and just being lifeless. There is no life to have, friends get neglected (not by choice), family fights for the Crohnie, and people suffer. No one's family asks for this, and sometimes it comes unexpectedly. My husband is a 33 year old man who has had the life sucked out of him, simple things he can't enjoy. There are many times I go to family functions by myself because he's in too much pain to leave the house. Crohnie's scout out a bathroom everywhere they go, it's normal to them.
Many caregivers experience "caregiver's fatigue", if you don't know what that is, look it up, it's real and it affects me all the time. I not only care for a very energetic 5 year old and our home, I care for a sick husband. He says sympathy isn't always enough. What can I do for him? I can raise awareness. This week, December 1-7, is Crohn's and Colitis awareness week. I'm making my stance known that I raise awareness for my husband, his friends, and many others around the world who are suffering. Yes, there are meds to treat this horrible disease, but they too come with crazy side effects. There is no known cure!!! You want to help my husband find a cure, visit Cure for IBD to see how YOU can make a difference. They say it takes a village to raise a child, it also takes a village to find a cure. 100% of any donation you make goes to fund research. The gracious gentleman who created this organization didn't do it for himself, and he isn't making a penny off of anyone's donations. Everything that is raised goes straight to research. We as a Cure for IBD family have raised over $100,000, lets keep that going.
I sit here today and wonder what the future holds for my family. How many more hospitalizations will we have to endure? How many more treatments will not work? Will they find a cure in time? Will he be gone from our lives forever one day because of this horrid disease? Will my son be left wondering why daddy is gone? Will I have to create a legend for Stephen to remember his daddy by? Will I be left a widow at a young age? These are questions that hit me everyday, they are not fun ones and they suck. This disease has taken the lives of many and it won't quit until we find a cure. Why am I so adamant about this? Because something has to give for my husband and his friends all around the world. Bottom line is WE NEED TO FIND A CURE!!!
If you know someone suffering with this disease or Ulcerative Colitis, hug them and make them aware that you are there for them. They need you. They need your love, support, friendship, and time. They need a shoulder to cry on, a visit at the hospital, a ride to the doctors office. They just need YOU!!!!!