Sometimes living with ulcerative colitis can take you to some pretty dark places. Sometimes the shame and fear is too much to take. Sometimes the pain…well, nevermind the pain.
Talking about ulcerative colitis with family and friends can be difficult. Explaining what it is tends to be an uphill climb, especially for those with little patience. I have dealt with countless suggestions to “hold it” or to “wait” in the last few years, especially from my less-than-understanding parents.
Some, regardless of effort, will refuse to understand. Some, regardless of effort, will refuse to offer patience. And some, regardless of effort, will refuse to comprehend the notion that it is no longer “fun” to take long drives to strange places without having an exact map of the restrooms along the way.
Yeah, I get bitter.
Beyond animosity, though, I get scared. I get scared a lot more than I used to.
I’m fearful of where UC is going to take me and of how I’m going to end up. I’m fearful of getting worse, of losing more security, of losing my mind. There are moments when fear gets the best of me, when it keeps me indoors and away from the fray. In these moments, I begin to understand just how strong a hold colitis has on me and I begin to understand just how hard it can be to admit that you’re afraid.
Fear comes with every mad dash to the restroom, with every thought of “What if somebody’s in there?” or “What if the toilet is clogged?” It comes with not being able to make it in time, with the absurd impression that people are actually noticing the struggles and the shame and that they’re laughing.
Sometimes I wonder why I care if people are laughing at me. I chew over the days when I used to “go for the laugh” and how I used to love getting a giggle out of anyone, no matter what the cost to my personal dignity. Ulcerative colitis manifests itself in different ways, but for me "it" produced an unbelievable spell of self-awareness, indignity, and self-pity.
When did I get so worried? When (and where) did I lose myself?
Because ulcerative colitis is, by all rights, an embarrassing condition, it can be hard to talk about. There are support groups, both online and “IRL,” that do tremendous work getting people together and getting people talking. These groups are great for understanding conversation, plus there’s usually music after the meetings.
Article comments
1 - 2 weeks from a colectomy
I have found that matter-of-fact honesty has worked best. "I have a disease that causes me to need to poop very urgently and painfully. It also causes me to be very fatigued all the time." If people have questions, let them ask. If they don't, then I shouldn't care. If they joke, I tell them bluntly, "It's not funny. It's painful and a debilitating humiliating disease." Usually, shame works to silence those unwilling to empathize.
2 - Marie Warder
I enjoyed reading your article, Jordan - with mounting admiration for you. Only a very special person could introduce humour into such a ghastly situation. I'll be keeping you in my prayers. Keep writing. You're a real gift to the rest of us!
3 - Comfy Tummy
There is no reason to live with fear if you have colitis. I was diagnosed with colitis in 2004 and have not lived with fear since I discovered the Specific Carbohydrate Diet as set forth in Elaine Gottschall's book - Breaking The Vicious Cycle. It actually heals your digestive tract. I've been symptom free for years without any meds. You can read about my journey on my blog at comfytummy.com
4 - 2 weeks from a colectomy
Dear Comfy Tummy,
I'm glad you found something that worked for you. It's not a miracle cure, hover. I tried it and it did not work. Neither did conventional medicine. The fact of the matter is that some with UC enter remission and stay there. Others never find it. It's hard to generalize to everyone based on one's own personal experience. Therefore, for someone who is about to have his colon removed for lack of any other solution, it's rather insulting to be told I have "no reason to live in fear if [I] have colitis." That implies I have not done enough.
Again, I'm glad to hear worked for you. I'm glad to hear that anyone has found reprise from this cruel disease, but the truth is that there's no hard science behind Gottschall's assertions. While anecdotes make for good reading, they haven't managed to prevent the inevitable removal of my colon.
5 - Franko
one of the problems with colitis, as with IBS, IBD, lactose intolerance and crohns is excessive malodorous flatulence or intestinal gas. I have found a great simple non medicinal solution and that is the Flatulence Deodorizer by Flat-D Innovations. It is an activated charcoal cloth pad that you place in your underwear and it absorbs and removes the gas odor. I have regained my self confidence because I am not embarrassed anymore.
6 - Jordan Richardson
Thank you, Marie. Appreciate it!
7 - Michael Moretti
Have no shame. Restrooms of the opposite gender. Roadside craps. Employee-only facilities. Fill your shorts and keep your chin up. The physical price may often be too much to pay; don't go deeper in debt in your mind.
8 - Californiality
I have a longtime friend who deals with the same issues. Countless times, we have left events early, shown up late, or not gone at all because of his affliction. I see the pain he goes through, so I am always flexible when we make plans. I wish I had a magic wand to fix it, though!