I recently had someone ask me about coping strategies on another blogging site, and it took me such a long time to write and compile that I decided to post it here, too. Fair warning: a lot of this will probably be old news to veteran UC folks, and also, it’s long. But in case anyone reading this is a fresh, confused UC neophyte, it may be of some assistance. (Or perhaps…ass-istance? Ouch, now I’m confusing my butt puns with PG Porn.) So, without further ado:
Coping with Ulcerative Colitis
I divide my disease into two categories: Flaring, and All Quiet.
Flaring time is definitely downtime for me. It’s hard to go to work since the bathroom is a good thirty-second jog from my cubicle,* so I stay home as much as possible.
To me, UC is all about the loss of control in so many ways besides the obvious; for example, in losing bowel control, you also lose control over your diet preferences, your pain levels, your ability to simply go for a walk or sit up in a chair. Overall, my coping strategies really center around regaining some bit of control, no matter how slight. These are my standbys.
Obviously during a flare we UC folks can’t eat much. I usually follow a mashed-up (hah, literally) version of the BRAT, bland, and low-residue diets. My strategy is to get as much variety as I possibly can in addition to the bananas-rice-toast-tea outline: I make a lot of different soups, homemade applesauce, cooked-to-a-pulp and pureed veggies (like potatoes, carrots and parsnips), pudding and sherbet if I can stand them, juice pops, and lots of fluids, you get the idea. Whatever I can tolerate. The only good thing about repeated flares is that I get a good sense of what I can have during them, and that helps me to feel in control and to make choices, however limited they may be.
I don’t like to rest. But with a flare, it’s necessary. So I call in sick and make myself a little relaxation pad on the couch or in my bedroom or hell, even in the bathroom. I put on my rattiest, softest, most comfortable pajamas, I collect the following:
- bland snacks
- plenty of reading and viewing material
- my trusty heating pad
- a phone
And then I fold myself up in blankets and pillows. If I don’t have this stuff or feel too shitty to do much, I take it slow or get someone to help me.
I tend to get pretty vocal when I’m hurting, but I don’t say much that’s useful, just “OWWWWW.” Having a network of folks I trust helps on this – they listen to me bitch and are at the ready if the flare escalates into something ER/prednisone-worthy.
– Bring on the funny
It’s harder when I’m flaring, but it helps. I watch a lot of funny TV or ridiculous horror movies, or I read something silly. I call my sister and talk about her boyfriend’s Ex From Hell (Sorry, Lewis) or I read a bunch of comfort books/melodramatic bodice rippers/YA fiction/slash fanfiction. Sometimes it works, and sometimes my sense of humor is overruled by my gut.
1a. Coping with the ultimate awfulness (AKA shitting your pants in public):
So what would you need if you had an accident at work/in the car/somewhere random? I dealt with this awesome scenario firsthand. The only way to beat it without a phone call and a long wait is preparation, preparation, preparation. My desk drawer is stocked with extra pants, wet wipes, extra panties. I used to stock emergency loratadine, too, before my doc told me to stop using it. My car has a lovely amount of emergency stuff in the glovebox and a bag in the trunk, and my purse almost always has an extra pair of underwear secreted somewhere.
In a work situation, it helps to have someone you feel comfortable going to in a crisis. I’m not saying I have this person. I’m still pondering it. :) I do have a mental call tree of my sympathetic local peeps.
Again, these tips all center around the same thing – attempting to take control of a situation when your body has effectively lost control. This is such a crappy situation that it’s hard to think clearly, but my goal is to use my mind to force my body to heel, to be calm and do what I need to do in a horribly awkward situation. I’m not always successful, but thinking about it and planning helps me. (Fear is the mind killer, blah blah blah, right? Sure!)
2. The All Quiet Tricks
Funnily enough, I get more depressed about UC when I’m not having a flare – largely because the pain and urgency of a flare up demands my full unwavering attention and then some. When I’m not distracted by the flare I think a lot more about my health, about stress, about medications and their side effects, about biological and fertility implications, etc. Most of all my top priority is keeping another flare far in the future. These are my tips for living between flares and making sure that space of time is lengthy. (For what it’s worth, I think it’s working: my latest flare happened about two years after previous one.)
Again. Sorry, I suppose it’s cheating to list it twice.
For me, this is a combo of talking and venting. I have an awesome husband, A., and some very supportive family and friends (online and in person) to whom I talk and vent to about my ass issues on a regular basis. It helps. If you can, build a network of people you trust who will let you bitch or ramble on as long as you need. If you don’t want to do this, counseling or therapy is a good option, too. The emotional impact of UC is as important as the physical, IMO.
As for venting, I watch online communities, I scope out blogs, and finally, I started my own. (Hey, that’s this thing…) I don’t write strictly about UC, and it’s a great stress reliever. And speaking of that:
– Stress Relief
This is a big component of dealing with UC, since (for me) stress can help cause or accelerate a flare. So I try to stay mellow. I think more about my reactions to crisis situations. I don’t freak out about stuff at work or home or on the road. (Especially not as much as I used to before my first flare and diagnosis! I’ve grown into a much calmer person.) I think this can be done by slowing down or focusing hard on your reactions to situations. I’ve also borrowed some friends’ recommendations for relaxation/stress relief techniques (thanks, Sasha!):
I take advantage of programs offered through my work; recently we had a stress relief seminar that focused on techniques like biofeedback, visualization and meditation. The Mayo Clinic site also has some good ‘fo for pain and stress relief. Again, counseling could also help. Other big stress relievers for me are pets. I currently have the best dog in the state of Texas, and she is wonderful for walking, petting and playing. Before A. and I got her, we had fish, and that was nice, too – the soothing motion of their swimming, and the sound of the aquarium water. If you can swing it, I recommend a pet.
Finally, I turn to the Internet a lot for stress relief (see Communication above, of course), whether it be for blogs, photo sites, silly stuff, whatever. Funny is always good, and I try to keep myself laughing even when I’m feeling like (pardon the obvious) shit. Reading about other people’s experiences with UC/IBD can be uplifting, too – it’s always nice to know you’re not alone, even when you’re on the pot.
As I had to forgo coffee after my diagnosis, I now self-medicate with chocolate and tea. My need for specific foods is not so great, since when I’m not flaring I’m not on a special diet – my pills control things right now. I recommend experimenting as much as possible: it’s easy to eat the same things repeatedly because you know they won’t make you flare, but it’s also a little soul-crushing. I love food. So I still try new things in very, very, very small increments, and I’ve taken up baking and cooking.
UC folks probably have a good idea of how the disease works. I think it’s important to stay abreast of the disease, to see what new treatments are coming out and what you think of them (hookworms, anyone?), but most importantly, I like to have knowledge of, say, my rights in my work setting or the ER, or of how FMLA affects me. Research generally calms me, but it can get depressing if I’m feeling low. I try to choose moments when I’m feeling all flinty and pugilistic toward the disease.
Some towns have group therapy options for UC folks. My old clinic in Duluth had group meetings, but I never went. I think this could be a good stress reliever, too – a good place to vent with people and hopefully not get too much helpful advice.
– Forgetful days
I love that I can sometimes forget I’m sick. Yes, it’s sucky to eventually remember, but the fact that I can forget for a little while means I’m feeling good. Revel in it whilst avoiding your flare triggers, I say.
And that’s my disorganized best for now. Any other questions? Anything you’d like me to expand on? I can get rambly and lose track of my train of thought, so please let me know if there’s something you’re interested in that I didn’t address.
I can think of a few.
– “Control” is nice in theory but tough in practice
– Work and Ulcerative Colitis are the best of enemies
– Sometimes it’s too much.
– What if you crap your pants between your work and your car?
I don’t really have answers to these. (Especially that last one.) I think I get better at dealing with them as my life and disease progress. I’m not above taking a mental health day, though. If there’s one thing ulcerative colitis has taught me, it’s to enjoy every moment. Come on, you all knew UC was a trite bastard before you started reading this.
* Not to mention the environment, which is generally low-stress work with admin and managers who try to bump UP the stress on a regular basis, under the mistaken impression that this is the only way to in. Gah.