Put Your Game Face ON!

Most, if not all, inflammatory bowel disease patients will have clinical depression. You'll at some point be on medication that make you feel like you're going crazy. Sometimes, those medications make you feel like you're on top of the world, and the next moment, you're ready to murder someone. If your medications don't put you in the dumps, constantly taking dumps and missing out on life will. It's tough to deal when your body is attacking you and you have all sorts of crazy painful and embarrassing symptoms.  It's just one of the many blessings we are given as IBD patients. Here are some things I do to put my game face on!

GAME FACE!!! (I'm literally incapable of taking nice looking selfies.)

1. If you are feeling suicidal, go to the hospital.

I won't be shy about this: steroids DO make me suicidal. My GI won't let me be on them anymore, because I start making suicide plans within only a few doses. I suffer such severe mood swings that I would rather just deal with my mini flares that I get occasionally when my Humira and azathioprine don't work, than risk killing myself. If you ever feel this way, whether it's from drugs or the blues that come with being chronically ill, seek professional help. You are not weak. You are not alone. You are important. Your life IS worth living. Things will get better. *hugs for anyone in this boat*

2. PREDNISONE CRAZIES!!! AHHHHHHHHH!!!

You can't help yourself. You just ate all the food in your cupboards, your fridge, and freezer. You're still hungry. You want to murder your husband one moment. You want all the happiness and rainbows to yourself the next. You want to adopt all the puppies, and cry when you realize your landlord doesn't allow dogs, and think all the puppies are going to die. I once dumped Holden and took him back twice in the course of three hours, because steroids make me insane. But when I was acting crazy and violent one moment and sweet and weepy the next, Holden always told me something that I tried to remind myself of when I was alone: this is not you, this is the drug talking. Say it like a mantra. You'll be off this, and in a short while, it'll be like a very bad dream. If the drugs make you suicidal, tell your doc, stat. Forgive yourself for any unkind words you may have said, cake you shouldn't have eaten, crazy stunts you may have pulled, and repeat after me. This is not me. This is the medication. Forgive yourself.

3. Weight gain and pizza face.

I wish I could help more with this one. I don't get moon face or swell up several dress sizes. The only part of my body that swells when I'm on prednisone are my feet and ankles. My feet get so swollen I can barely walk or stand. My shoes get super tight. I haven't found a solution, but propping my feet seems to relieve some of the pain. While you're on prednisone, continue to love your body. A little weight (or a lot of weight) is not the end of the world, and I know people can lose it. You could try working with a dietitian or exercise to lose the weight. But again, I don't really gain weight. There are plenty of people on the internet that do have expertise in this area, and I suggest checking them out.

I do get the nasty, inflamed cysts that sprout all over my face like mini volcanoes when I take steroids, though. The first time I experienced this was a blessing in disguise. It was how I learned to do my makeup. I used eye makeup to distract, and tried to cover up the welts on my face as best I could. Try to keep your face as clean and well-moisturized as possible. Having a dirty face will only contribute to the problem, and flaky zits are never easy to cover, and stand out worse than a non-flaky one. It'll clear up after you finish your treatment, but if it's really bothering you, see a dermatologist.

4. I want to sob my heart out.

When you're diagnosed, you go through a grieving process. Suddenly. your life revolves around doctors, bathrooms, tests, infusions, scary surgeries,  not being able to eat your favorite foods... it stinks. Your life is suddenly different, and you might feel out of control. That's ok. That's normal. It's ok of you need to cry your eyes out on your best friends shoulder and get snot everywhere. That's what best friends are for. The important thing is to be able to pick your self back up, which brings me to my next point...

5. Get creative!

Whenever I feel down, I fall in love with writing again. It's an effort to actually put pen to paper, because my dark places consist of dreaming my days away, eating ice cream and struggling not to engage in some sort of self-destructive behavior. But, I do it. I hate it at first. I won't deny it is a struggle, that I have to force myself to scribble and scrawl. I also really love art. I'm no Michelangelo, but I really enjoy painting, photography, making collages, and pottery. During particularly rough patches in high school, I always made sure I took some sort of art class. I also listen to weird bands none of my friends do. The more freaky and unusual they are, the better. (If I wasn't in love with a writer, I'd be stuck with some band geek. I lucked out.) The point is to dig yourself out of the hole through art. If you hate art, find your "ladder". I have some more ideas in #7.

6. Find your childhood favorites.

I love listening to music when I'm down. I also love things that remind me of my childhood happiness. That means to lift my spirits, I listen to weird combo of Shania Twain (I hate Country, so keep this a secret ), Phantom of the Opera, and Chubby Checker's "Twist". I also freak out about Polly Pockets, flip (in a good way) when my little sisters show me their Barbies wearing the same clothes my Barbies did, and look through old photographs.

Me and Socks! Age: two

It's nice for me to flip through old photos of me and my sisters and laugh at our shenanigans. It takes me back to simpler times.

7. These are a few of my favorite things!

I've written a list, so that if you're down and need more ideas, you can just reference this list. Yay! 

Games: Legend of Zelda (any game will do, but Ocarina of Time will always have my heart), Egyptian rat race, Find It!, Mario Kart, air hockey, and how-badly-can-I-annoy-Holden or how-many-questions-can-I-ask-Holden-before-he-gets-irritated.

Movies and TV Shows: Pirates of the Caribbean, Ferris Bueller's Day Off, Shaun of the Dead, Psych, Cloudy with a Chance of Meatballs, Perks of Being a Wallflower, Monk, Lord of the Rings, The Hobbit, Paul, Saving Private Ryan, RuPaul's Drag Race, The Girl with the Dragon Tattoo (Swedish version, the American version ruined Lisbeth).

Activities: Cooking, baking, cleaning, reading, writing, taking walks, holding hands with my best friend and forever love, chilling with my sisters and brothers, and going for the occasional run.

8. What NOT to do.

If you're struggling, deal with your emotions in a healthy way. Don't drink your problems away, over dose on the pain meds, self-injure, push family and friends away, engage in risky behaviors, etc, etc. These things only hurt you. They don't help. You will probably do some things you regret, but learn from them. Grow from your mistakes. You will have days when you lash out at your partner and say horrible things. If you're like me, you'll make the occasional nurse cry. (Oops.) Take your lesson, and don't repeat the behavior.

If any of you were wondering why I've been so spotty with my blog posts, it's not my IBD that's been kicking me in the rear. It's the lovely depression that comes with my IBD. These last few weeks have been really hard for me. But I wrote this to prove to myself, and to you, that I can get through this, because I'm so much tougher than these puny diseases I have. Against me, these illnesses, mental and physical, don't stand a chance. I have an awesome support network, people who love me, weird stuff, and this blog. I can do this, and so can you. If you need a pick me up, I hope I gave you some ideas!

Commonly Asked Questions from the Newly Diagnosed

Last week, I woke up Sunday morning with excruciating pain in my back. After a visit to a doctor on Wednesday, I was informed that I probably just slept on my back funny and re-injured it (I have been a few car accidents) and will  need physical therapy. I'm feeling better, but was so uncomfortable last week I could literally only lie on my side to get some relief. I was prescribed Vicodin, but after being off of narcotics for more than a year and a half, it made me loopy and nauseated. The pain may have been gone, but I felt so sick it was barely worth my two hours of nauseated bliss, especially when it started messing with my colon. I felt gross. I'm mostly back to my normal self, and hopefully I can find a way to get out of physical therapy.

So anyways, sorry I couldn't write last week. I am making it up for you today though, with common questions the newly diagnosed seem to ask, or questions I see a lot that I have some experience in. Hope this helps for those of you who are trying to educate yourselves, either because you have IBD, because someone you love has IBD, or because you're just interested. (Kudos to educating yourself and raising your own awareness, yay!)

1. Will this disease kill me?

This was the first question I asked my doctor when I was diagnosed. Actually, I was so terrified and my daddy knows me so well, that I looked at my father, squeezed his hand and telepathically asked my dad to ask this terrifying question for me. He did, and my doctor responded "well, I can't really say..."

Thanks for making a teenaged girl feel so at ease, doc. 

You probably aren't going to die. Yes, it happens. Sometimes, someone won't get an answer until after they die. Sometimes, people die of complications in surgery. Sometimes, you die of dehydration or malnourishment. You might be prone to c diff, and one day, it claims you. It happens. But you simply can't live your life wallowing in that fear, because you'll miss so much if you do. You're probably more likely to die in old age, in your sleep. Just grab a hold of life and live fearlessly.

Basically what my doc said when I went into ER pre-diagnosis.

2. Can I be cured?

There's no gentle way for me to break this to you. No, you cannot be cured of IBD. Sorry. No amount of vitamins, sunshine, water, medications, exercise,  special dieting, etc. will cure you. You can go into remission, but you are not cured. Any reputable, licensed doctor will tell you that there is no cure. If your doctor tells you to do yoga every morning, eat grapefruit for breakfast and then go climb Mt. Kilimanjaro on a full moon to be cured, run. You might think this is an extreme example, but I see people on CCFA's support pages claiming wacky things all the time, like that people in Florida can't get or rarely get IBD because sunshine cures the disease. Not true. There are people in Florida IBD.

3. I have both ulcerative colitis and Crohn's disease. My doctor said so.

Nope. You, my friend, are misinformed. I know doctors are a little difficult to understand. What your doctor probably meant was that you were originally diagnosed with ulcerative colitis, and then over time, it became apparent that you actually have Crohn's disease. Or, that you have Crohn's colitis. Crohn's and UC are similar diseases, but they are separate, individual diseases.

While both diseases are autoimmune, inflammatory, chronic, and are located in the gut, there are some key differences. Crohn's disease can affect any layer of tissue and any part of the digestive system. Most people who have Crohn's have Crohn's of the ileum. In fact, when Dr. Crohn first discovered the disease, it was called terminal ileitis, because in most cases, it occurred in the terminal ileum.  If you have Crohn's, you may flare in your mouth, esophagus,  stomach, small intestine, large intestine... wherever  as long as it is in your digestive system. People who have Crohn's colitis have Crohn's disease in their colon, and the disease can affect and damage any layer of tissue. This is different than UC, because while UC flares are restricted to the colon, and only the first two layers of tissue are damaged.

Here, have a visual.

I encourage you to read a book about IBD, talk with your doctor, or visit the CCFA page to more fully understand the diseases. I am an informed patient, not a trained specialist.

4.  Is Crohn's disease worse than UC or vice versa?

This is a tricky one, and my answer will probably upset and offend some people. There are two levels to this question: how tough is the disease emotionally, and how tough is it physically. 

On a physical level, I don't really think you can compare the two diseases like this. I have a friend with Crohn's disease who's disease is much nicer and more tame than my UC. She responds well to lighter forms of treatment, like prednisone, whereas I need to stay on Humira, because I begin to flare as soon as I am due for the medication. I have another friend with Crohn's who is decidedly worse off than me. She has had numerous surgeries, and even Humira and azathioprine, medications we both take, do nothing for her. She is struggling, and in pain every day. I am responding well to the same medications her body is not so accepting of.

On an emotional level, everyone deals with grief in different ways. Some people tackle life head on, and come out just fine. Others are crushed when they learn they have a disease like this, and even if their physical symptoms are relatively mild, can spend years hiding their shame and embarrassment. Some people are in between. I have begun to hate this question, because it's turned into "I have a rougher life than you, and therefore your pain is invailid" on support forums. While I think this is a perfectly natural question to ask, I think the follow-up question should be: how do we support each other and love each other? Let's lift each other up rather than compare notes and put down a patient who just got diagnosed with mild UC in the rectum and is in tears, while you have had multiple surgeries and barely made it out alive more than once. It's a horrible thing to have no compassion for your fellow suffering human being. Yes, you have had it rough. But no, that does not give you permission to put down the person who is going through the shock and disbelief of being newly diagnosed with a mild case. Plus, if you want to play Who's Sicker and has it Rougher, I know a girl from El Salvador. She has no colon. Her only form of medication is vitamins. Her mother washes clothes so she can go to school and become a nurse.

I dare you to beat that girl's brave story. 

I plan on doing a part two later this week, to make up for the post I didn't do last week. Keep your eyes peeled!