A Rant on Emotions and IBD

Note: I won't be continuing the "I want to be Called Mommy" series until after I can see my doctor, which will be in a couple weeks. I have very specific questions that I want to make sure are answered correctly. If you have any experience with IBD and pregnancy and parenthood, please contact me. Thank you all for reading and supporting my blog!

IBD and emotional problems go hand in hand. I lost friends, my health, money, being able to be active, any bit of positive body image I had, and the freedom to eat whatever I want. I gained fear of going out in public, a panic disorder, horrible hospital experiences, the joy of having a boss who humiliates you constantly for your disease, and so many emotional (besides my physical) scars.

Specifically, I have been diagnosed with major depressive disorder, a panic disorder (this no longer applies to me- I only had it for a short while during a particularly horrific hospital stay) and social anxiety. I was diagnosed with with these mental illnesses long before I began bleeding, but having IBD didn't help much.

If you have IBD, your hair might fall out. It is embarrassing to see people who have no filter lean in close to you, and comment loudly, "WOW! You're really losing a lot of hair". Every. Time. You. See. Them. I started wearing caps and beanies to hide my thinning hair. I recently just cut my hair and styled it to make it look thicker, because while some patches of hair have grown back, my bangs, which used to need to be thinned, are now so sparse that my scalp shows clearly through my bangs. During my last flare, I'd wake up to a hairy pillow, and no matter how carefully I combed my hair, the teeth would come out matted with my locks.

Then there is the weight loss and gain. In a flare, you lose weight because your body isn't absorbing nutrients or water. Your doctors throw you on an evil round of steroids, and for most people, you suddenly gain a lot of weight. People who need steroids joke that they need three wardrobes- one for their regular weight, one for their flare weight, and one for their steroid weight. They may kid, but they also speak the truth. I am lucky I don't gain a ton of weight, but I do get extremely swollen feet and elephant ankles when I'm on steroids. It's unsightly and painful.

Speaking of steroids, my mood swings so badly when I'm on them that I can no longer take prednisone (a steroid commonly used to treat IBD flares). Within twelve hours of taking the medication, I begin to swing between extremely depressed, furious, and anxious. I begin cleaning like a maniac, unable to settle myself. I take melatonin first thing in the morning to calm my body. But within only a couple doses, I become very suicidal. My first thoughts in the morning are ways I can end my life. I cry myself to sleep, knowing that inside somewhere, underneath the drugs, I don't want to die, but all I see are images of me overdosing or tying a noose. When I'm not angsty and more suicidal than I've ever been, I feel like I'm on top of the world, like I'm Superman. I feel like I can do anything. I once dumped my partner because I was furious at him for no reason, other than the drugs getting to my head. Thankfully, he took me back. My GI no longer allows me to be on prednisone because of my severe mood swings and suicidal thoughts.

You get pimples every now and then? Ha. Wait til the deeply inflammed cysts start sprouting up all over your face and body when you take steroids. You will combat those cysts every way you know how. You will spend so much time in the mirror, trying to cover your pepperoni face, but it won't matter. Your face will be red, tender, and covered with infected lumps. People will comment, and unless you start wearing a mask, there is no way to hide your shame.

Have you ever had a bad fast food experience? You ate way too much greasy, spicy food, and suddenly, you need to use the toilet. You're cramped on the fast food throne, and it burns. Now imagine that feeling while you're at work, when you're in bed, trying to sleep, when your partner is trying to be romantic with you and kiss you. Imagine feeling like that all the time, but multiply the pain and slushy gut feeling times ten. Pretend for a second that that is your normal, that you have to go into work feeling like that every day, because you've been denied government help, and you need a way to pay your bills. Have you ever had an accident at home or in public? Imagine this is also normal. I once had a job interview for a beauty store during a flare. I was so ill and fidgety I didn't get the job. I spent the thirty minute interview jiggling my leg, holding my breath, and focusing on not crapping myself in the middle of a mall food court during an interview. Just try and imagine having to do that, and knowing that you probably won't get the job.

I bet you probably wouldn't want to go out, huh? You probably would stay at home, hiding from the world like we IBDers sometimes do. We are prisoners in our own bodies. When we try to go out, even just to go to the pharmacy or buy some groceries, we are denied bathroom access, and have to endure the humiliation of strangers commenting on the horrible smells and sounds coming from our stall.

You're going to need surgery sometime or another. Can you cope with an ostomy bag? I'll be honest, although I'm a little ashamed to admit it: I used to think having an ostomy bag was disgusting. I do think it's a normal reaction to have, but not a healthy one to keep, as this will be the bag that saves your life. How about the scars from IVs gone wrong and PICC lines? My arms are littered with scars from bad IVs and a PICC line. I'm proud of my scars, because I consider them beautiful reminder of strength, but would you? Our society values perfect skin, and the scars you will inherit from surgery and needles are not "perfect".

Imagine people constantly commenting on how pale, ill, thin, fat, pimply, bloated, etc you look. Imagine hearing it constantly, even when you've gone out of your way to look normal and healthy. It's hard for me to constantly hear people telling me they wish they were as thin as I am, when I know that if I were to flare again and lose the 20-35 pounds I lose in a typical flare, I will this time be very underweight. I hate when people tell me they want to lose ten pounds and look like me, because I would love to have their ten pounds for insurance.

Does it surprise you that people with IBD suffer anxiety and depression? My surgeon once told me that in the hundreds of people with IBD he's performed surgery on, he had yet to meet one who did not suffer depression and anxiety.

If someone you know has a chronic illness and loses or gains weight, has severe mood swings, has thinning hair, looks ill, or whatever... just keep your unkind thoughts to yourself. If you don't have anything nice to say, say nothing at all. I already know that my body is not the most beautiful thing to look at or hear about. When you see a stranger who has an imperfect body, don't be so quick to judge. You never know what that overweight, pimply-faced, panicked-looking person is going through. We appreciate your kind thoughts and words.