Yesterday started beautifully. I woke up with energy, took my yoga mat out the back porch and spent a good hour flowing and connecting. I had plans to get some grocery shopping done for the SCD diet and do some packing/purging of items in preparation of the move, as well as to get out and enjoy the beautiful weather. I was happy, blissful, and feeling like the medications were finally working. Around one in the afternoon I lost my energy, and the evening ended/proceeded with the worst episode I’ve gone through since my diagnosis.
This is the thing with ulcerative colitis. It challenges you. It wants to beat you.
It says “Try to keep that same blissful feeling,” and laughs while inside the pain is so intense you’re whispering profanities to yourself and squeezing your wrist just to bear through another cramp.
It dares you to not be frustrated when you have to cancel your shopping trip with friends because you haven’t been able to go more than a couple hours without an urgent bathroom trip.
It taunts you to feel energized and get out of bed in the morning when you were up every few hours the night before, rushing to make it to the restroom without waking anyone else up.
It tries to steal your confidence when you look in the mirror and see this gaunt, ghostly figure with dark circles looking back at you. It laughs when you step on the scale to discover you lost another 2 pounds overnight.
It smiles when you still have a terrible taste in your mouth after brushing your teeth and sees the tears in the corners of your eyes.
It wants you to feel the shame burn on your face when you stand in line at the pharmacy with your preparation H wipes and sensitive toilet paper and the clerk tries not to make eye contact.
It may try, but it doesn’t have to win.
There’s always another way to look at things. I’ve felt the worst that I have in a very long time over the last 24 hours. My bathroom trips are in the 12-17 times per day. Everything hurts. I shed a couple of tears of frustration this morning. That doesn’t mean I’m weak. It doesn’t mean I’m broken. I’m battling. I’m still here. I can fight back. Here are some of my strategies for the war tactics of UC.
The pain is temporary. When it seems overbearing, I try to distract myself with other thoughts. Read a book. Set some goals. Count the tiles on the floor. Make plans for the new house. Hum a song. Think of something better than this moment.
Good friends understand when you have to cancel plans. Start planning another trip. Or a movie session. Or just text. Whatever I can manage.
Don’t make it the disease’s choice whether I sleep more or get up. It’s my choice. It’s not “the ulcerative colitis” that kept me in bed. It’s that I was tired and needed more sleep. Or I’m taking it easy today because I’m exhausted. My choice. Don’t give power to the disease.
Forgive myself for having the ugly thought. It’s not true and it’s not helping anyone to feel sorry for yourself. Yes, this sucks. But I have the power to choose how I’m going to feel about it. Put on a little makeup, and a smile, and you’re good to go. Maybe do a face mask or paint your nails. Show yourself some love. Don’t let this steal your joy. What do you really want today? How can you make that happen?
If the tears come, let them. This is hard stuff. You’re going to be sad. You’re going to be frustrated. Things aren’t going to go your way. Life is not as you knew it before. But you have a choice. You can react in a manner that makes it better, or you can make yourself feel worse. Let the tears fall, then figure out what you’re going to do next and move on.
We’re taught not to talk about our bowels or anything that comes out of them. It can be embarrassing buying preparation H and soothing wipes and keeping it all in a cupboard with your enemas and rectal suppositories next to your boyfriends cologne. Those shameful terms are ones that no one wants to hear or have talked about. But talk about it. Make jokes if it makes it easier. If you keep it to yourself, the disease will stay inside you. The more awareness the better. One of my favorite quotes from Jillian Michaels “Get comfortable with being uncomfortable.” You never know, something you say might inspire more research, might reach someone who is alone in this disease, or may bring some insight to someone who has no idea what an inflammatory bowel disease does.
Ulcerative Colitis can try to steal my dignity, my confidence, my strength, and it can try to do a lot of things to break me down. But it won’t win. I have hope. I am strong and I am determined to beat this.
I don’t know what brought on the extreme episode. Possibly the piece of Guyere cheese. It was on the SCD safe list, but the extreme pain started after that. I’ve decided to add dairy to my list of restrictions and move forward. I just ate some homemade chicken broth, said a prayer, and am waiting to see how that effects me. Other than that, it’s just been water today.
One foot in front of the other and you’ll keep moving forward.