My Monster Has A Monster

Everyone calls my boyfriend Cookie Monster because all he eats is cookies. Well there is a reason why he loves cookies so much. Cookies are what kept him alive. No joking, he has a terrible disease called Crohn's. For the longest of times nobody could diagnose him. He would have knots in his stomach (literally) and would have blood coming out of him.

He was an amazing basketball player (still is one on his good days with no flare ups and knees ok) and is 6" 4' and when a person of that height gets down below 90 lbs life starts to go down drastically. He couldn't eat anything or he would have a flare up and be in a lot of pain. Doctors were no help to him. He would just curl up and wish the pain away. Then it was his birthday and someone gave him a cookie and he ate it and it didn't make his stomach hurt at all. Let's just say the rest is history on the cookie subject matter.

Things have changed because 4 years ago he went to a specialist in Atlanta.The surgery they performed was a day surgery. Frankie says he feels like a new person. He still has flare ups with certain occasions but we have both learned what he can and can't eat still and keeping his stress level at a real low.

What is Crohn's like for him? Considering Crohn's disease is a form of inflammatory bowel disease and it usually affects the intestines, but may occur anywhere from the mouth to the end of the rectum; Frankie has had it rough. He said he will have mouth sores, his stomach will shrink and cramp, and he has had fistulas and fissures.

He knees are what keeps him from playing basketball a lot. He has arthritis in them thanks to Crohn's. At times there is nothing that can stop the pain. Even a powerful of steroid cannot help him at time. Watching him twist and almost scream stabs my heart like nothing else. Sometimes when he is wishing death as there is sweat on him everywhere and his knuckles are white as he grips whatever he can I feel like a total waste to him.

 Considering I have started this post with his approval I am going to give you the hard facts. He be will constipated and enemas are his friend. He was so red the first time he asked me to give one to him I thought his face would catch on fire. Honestly, our relationship was strengthen because he knew that I would protect him and take care of him. I do.

How do I protect him? Well I am the first one to tell a waitress if they get his order wrong. I'm the first one to dare someone to give him something spicy. I'm also the one that dares anyone to make fun of him the days he has to wear adult diapers because he had to take a muscle relaxer.

You want to see me go off? Make him stressed out. I will walk all over you and then try to back over you with my car. I have gotten right up in a complete stranger's face because they stressed Frankie out for no reason. Because let me tell you emotional damage to him causes him physical pain and not his head his stomach!

There is no medically accepted pharmaceutical or surgical cure for Crohn's disease. Treatment options are restricted to controlling symptoms, maintaining remission, and preventing relapse. Some people have relapsed from it just like they do cancer. Years later the symptoms come back.

There is no cure for Crohn's disease and remission may not be possible or prolonged if achieved. Sometimes when remission happens relapse can be prevented and symptoms controlled with medication, changes in life, and in some cases, surgery. In some cases where Crohn’s treatments have worked the disease may not significantly restrict daily living.

My Frankie is one of those people. He used to live in an assisted living village. Now he has a nurse that comes three times a week and is on call. He hates bothering her though so unless he is in severe pain he doesn't call her. 

I have spent many nights asleep on a palette outside his bathroom door because he literally could not leave the bathroom. Yup we are not the couple that thinks the other doesn't poop. Well that's because literally poop is a huge part of our lives. We know what toilet paper feels good and what wipes are not soppy wet. 

Does Crohn's affect our dating? Yes and no. We aren't really outgoing couple. We learned early on in our relationship that me reading to him was amazing or him playing me a concert on the piano makes me feel like we just ate at 5 star restaurant. We try to go out sometimes but I always make sure that there are well accessible bathrooms. I know sometimes he can get stress because of where we are and I always remind him that I'm there and there is no reason to be stressed out.

He has to keep a food diary and I help him with as much as possible once I learned how important it is to notice when new flare up comes from certain foods. Grilled chicken or Parmesan chicken his favorite. Those and cookies I can make without burning them or the house down. 

For a lot of people it's a taboo subject of what's wrong with him because it deals with him going to the bathroom. For him it makes dealing with his situation worse when people are grossed out by their problem. There are things you shouldn’t say to people who have lost a child, has AIDS, has cancer, or lost a limb. And there are things for people suffering from Crohn’s that they don’t want to hear. "Why do you have a handicap tag? You don't look handicap." “That’s gross.” “You look great.” “You can’t always be this tired.” “You don’t look sick.” “You have to go bathroom again?” “You have to eat more than that.” “Just try this.” “You can’t eat that but you can’t eat this?”

I have heard so many snarky people tell him that he isn't handicap to the point he had it put on his real tag which I know embarrasses him. I know some woman never seen it coming when she said "That's wrong with young people they think they should special privileges like older people." I point blanked stopped her and she was a little shocked that I stopped her. She simply said, "Neither of you look handicap." Frankie had already left because he had to go bathroom really bad, hence why we parked there otherwise we wouldn't have. I took a deep breath, "And you don't look stupid but looks can be deceiving. He has a disease where he has to run the bathroom." She was staring at me as I walked passed her calling her a dumb bitch.  He even has to get a special tag at Disney World so he can jump out of line and go to the bathroom. I know it embarrasses him. That's why I want a cure for him so bad. 

Right now he is finding a good balance of a healthy protein diet, yoga, dancing, and meditation. He still has flare ups from time to time from stress or a certain food. We make it work as a couple. I am on a trip around the world right now and I can honestly I have been worried constantly that my iPad or phone going off his brother calling me to tell me something bad. But I just pray and go on. I cannot wait to marry my Cookie Monster.