I try to have a pretty positive outlook on my life with ulcerative colitis. I figure I’m stuck with it regardless of my attitude, so I might as well look on the bright side. I’ve even spent some serious time reflecting on all the gifts that my ulcerative colitis (Frank!) has given me.
I’m also a firm believer in keeping it real. I started blogging about my life with UC because I hit a really rough patch with it this summer. I went searching for blogs, books, anything that would give me someone to relate to, and came up short. So while being positive is the norm around these parts, and what I believe is the best thing for my everyday life, today I want to be brutally honest with you. There are some really awful things about living with this disease.
College Lauren says, "You kind of suck, Frank."
Ulcerative colitis is unpredictable. One day I’m feeling pretty much okay, and the next day, I’m curled up in bed in the fetal position, calling in sick to work. I hate being taken by surprise by my own body — I’m not sure I’ll ever get used to that.
When you live with chronic illness, you often have to cancel plans at the last minute. What was supposed to be Sunday brunch with a friend turned into 4:00 pm coffee this weekend. Our New Year’s Eve plans got changed at the last minute. I’ve cancelled on friends more times than I can count in the last six years. I always feel terrible when I do this, despite my incredibly understanding loved ones. (Not to mention that sometimes I miss out on really cool things!)
Frank (my UC) was nice enough to bring some bonus ailments along for the ride. Yes, I’m being sarcastic. Thanks to my ulcerative colitis, I also have arthritis in my joints and back. And because of the UC, I can’t take any anti-inflammatory medication. Pretty much that means a lot of days and nights spent lying propped up on the couch or in my big comfy chair with a heating pad. And hey, I just ordered a re-chargeable heating pad for on-the-go! Exciting, right? (Actually, it kind of is. It can charge in the car, with a standard outlet, and in a USB port. That’s pretty freaking cool.)
It can be embarrassing to talk about. Clearly, I’ve moved past this one for the most part, as I blog about my life with UC. But it’s a digestive illness. When I was first diagnosed and people asked me about the symptoms, I hated describing the blood, the frequent trips to the bathroom, all of it. Because it can be embarrassing, many choose to suffer in silence.
But the thing I hate most of all is that I find it really, really difficult to explain my life with ulcerative colitis to others who do not have it. Many of the symptoms of UC sound a lot like things we all experience from time to time. Stomach pain. Cramping. Diarrhea. Fatigue. And while those are the symptoms, it isn’t the same as when you ate something that disagreed with you and had to run to the bathroom a few times. While I find that people mean well and really do try to understand, the symptoms themselves aren’t super severe-sounding. Take my word, they are. It’s just that I don’t always get very graphic and explain that the sharp pains in my stomach feel like a tiny person lives in my colon and is scraping away at my insides with a pick ax or that when my disease is at its worst, I sometimes have to get out of the shower three or four times to use the bathroom.
What about you? Feel like sharing anything that bothers you today? Get real with me. What sucky things do you have to deal with?
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Lauren, Thanks so much for being honest AND posting. It’s not hard to think and write about the things that suck, but it would be hard to post them. I too have worked with each and every one of the sucky expeiences you described. We are not alone but it feels that way at times. Your sharing lifts me.
So..
I’ll share one of my real sucky things….I hate hiding my bathroom noises and cleaning toilets after an explosion! WOW…I can’t believe I posted this…please do not invite us to share again…..:)
BananaMan….(BM) ..
Thank you so much for your kind words. You’re right — easy to write, difficult to post. Several of my UC posts have been difficult to hit “publish” on, but they have been some of the most well-received, too. It is nice to know that others can relate.
And YES on the bathroom noises. It’s the worst when you’re out and about and have to use a public bathroom. Ugh. Thank you for being brave and sharing!
True story Lauren! I’m glad you posted this.
Thank you for posting this! It can be so hard explaining to people why you have to cancel plans at the last minute, which I do often. Like you, I have an understanding support system, but it’s still frustrating. Many of my friends will say, “I thought of you yesterday– I had the worst stomach ache,” and I think, “I can sympathize, but you don’t really understand what UC is like at all.”
I’m with BananaMan up there– the noises are the worst. I turn on the fan, the faucet, whatever is available in a bathroom if there are people outside.
For me, one of the most difficult parts of UC is the anxiety it brings. I’m doing much better right now, but a year ago I barely left my house. I COULDN’T leave my house, both because of my UC and because the anxiety over needing a bathroom, rushing to a bathroom, feeling sick, having an accident, etc was just too much. I work from home, so when I’m in a flare I hardly leave the house. It’s fortunate in some ways, but really horrible in others.
During a rough flight the attendant told me to be seated and buckle back up. I had to explain that I had a medical condition and she did not want to see what was about to happen…She said “fine, but we are not responsible for your safety in there!” Well, OK then….that was the least of my worries…:)
Oh my goodness!
Yes, I find everyone is sympathetic and means well. It’s just difficult to explain and just as difficult to understand without experiencing it.
I remember the anxiety about leaving the house. That has (mostly) passed for me, but I’m always very aware of where bathrooms are when I’m in public places.
Brave post! Brave comments! Bravo, UC community. I’ll add my suckiest problem w/UC: going for a run (hell, a walk to the subway) and panicking because I know I NEED a bathroom NOW and being turned away from a place because I’m “not a paying customer.” Bad things happen when I can’t get to where I need to get ASAP.
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Oh yes. Sometimes I tell them I’ll buy something if they just let me use the damn bathroom.
Spot on, Lauren. Also, new idea
Amen amen amen. Amen.
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