Poop Factory

(Video NSFW)

The good news is I'm back to pooping like a champ - the bad news is I'm running my poop factory on the night shift and it's really messing with my ability to get back to the day job. I've been lucky enough that my job has let me sign on from home to help get some work done, but the problem is that I'm so tired and twisted from pooping like a machine that I find myself being flighty and making embarrassing mistakes, which bring on the darker side of the prednisone mood swings, depression and paralyzing anxiety. My daily schedule is basically toss and turn and poop all night, fall asleep around 7am, get up to poop and take prilosec around 8:30, fall back to sleep until around 10, take the first round of prednisone, try to wake up and eat something, slump around like a loser, take the second dose of prednisone around 12:30, and slump around like a loser some more.

I was honestly looking forward to being on a course of prednisone right now. The last time I took it it make me hyper-productive, and I was hoping to have a similar experience this time around considering I'm in the final two weeks of my semester. Unfortunately I'm thusfar only more disorganized and unmotivated than ever and it's making me rather disgusted with myself. I have so much I can be doing while I sit at home healing my body, but instead I just watch the time go by, waiting for tomorrow and hoping it'll be better than today. Tonight I'm going to try to take something to help me sleep with the intention of getting to work for at least a half day tomorrow. I'll probably be pissed off and miserable the whole time I'm there, but at least I'll be out of the apartment.

Relapse 2012

Two weeks ago I was doing pretty good. Not taking great care of myself - drinking iced coffee and mixed drinks socially - but I was doing pretty damn good by all accounts. And then I went in for my annual scopes.

Ordinarily I look forward to my annual scopes. I get to take a planned sick day off of work and enjoy the countdown from ten as the knock-out drugs warm me over on the exam table. But this time I wasn't ready to go back to work the next day. As of today I've been out of the office for almost two weeks with a full-blown flare-up.

At first I thought the preparation was taking some time to wear off. I came home and pigged out immediately after the procedures (I get my colonoscopy and endoscopy done at the same time) and felt well enough, until I tried to go to the bathroom and a river ran through me. The next morning saw more of the same and there was little changed by Friday. At this point I had my doctor paged, as per the instructions on my release forms from the endo clinic, but while he sounded concerned his advice was "if you're starting to feel better you're getting better."

By that Sunday I was getting desperate for some relief so I took an Immodium AD. This stemmed the diarrhea, but started me vomiting. On Monday I called the doctor again and he suggested Pepto Bismol, which struck me as overly-simplistic- I'm not exactly consulting a gastroenterologist for over-the-counter solutions.

So J picked some chew tabs up from the corner store and on Tuesday I stepped out to by the old fashioned liquid and some popsicles, as the puking had turned me off to eating solids. The pepto did indeed help continue to slow the flow of the runs, but it also incited a stomach pain that resulted in a two-day festival of shomiting. Every time I'd sit to poop my gut would contract and I'd shoot liquid out of my face and into the sink.

By Wednesday, exactly one week post-procedure, I was done pussy-footing around with Band-Aid fixes and was ready for a real and actual solution. I was missing not only work but school, and in the middle of finals season to boot. The doc had mentioned there was very slight inflammation indicated on my scopes, but nothing that should make me sick. However, he did admit it was possible that the mere act of scoping me had caused the ruckus I was experiencing. I was eager to confirm this and left a message with his office that morning. I eventually got through to the PA, who always has it together. She was kind enough to call me even though she was out of the office that day, and advised me to come in the next day to be seen, or go to the ER. Well, had I any faith in my local ER I probably would have wound up there that night. I was having spasms every hour on the hour and it was excruciating. At one point I tried to camp out on the bathroom floor because I was so tired of the back-and-forth from my bed to the can. By 3am things began to slow down to the point where I was going every two hours and by 7am I was able to sleep for three hours uninterrupted. I was at my doctor's office by noon, and was given IV fluids, and anti-nausea med and prednisone. So I've been on 40mg for the past two weeks, and just started to taper down to 30 today. I have a slight moonface, but leg pains and sleeplessness are my current concerning side-effects. I've been working a few hours a day from home just to help out at the office, but the thought of commuting back to work on Monday is nothing short of intimidating. My boss and my professors have all been understanding, and I'm hoping to get more into the swing of things by next week.

A River Ran Through Me

I'm working on a pretty lengthy update, but long story short I passed more fluid out of my butt in the past week than most people do in a lifetime. GROSS. Tonight I ate solid food for the first time in six days. Cross your fingers and stay tuned for the full story of flare-up 2012.

On Puffy Faces

All this hubub about Ashley Judd's puffy steroid face (read her essay, it's amazing) reminded me of a moon-face photo I grabbed when I was home over Christmas break. I meant to post it then, but wound up putting it on my desk and forgetting about it until now. I wish I had a better "before" photo at hand, but this will have to do for now.

Before prednisone...

                                                               ...and after.

I'm probably about 6 in the before photo, and about 13 after, so there's admittedly a big gap there. But the before face was basically the same structure until I hit 12 and wound up on 60mg of prednisone for four years.

Besides the obvious detrimental effects of living with a visible deformity, there were unseen physical effects as well. At one point my forehead was as engorged as my cheeks and it was actually painful to keep my eyes open. My weight ballooned to 160lbs (I was and am 5'2) and I had to have a breast reduction when I hit an "e" cup (it was a decision two-years in the making).  Oh, and I had four kidney stones when I was 14. On the plus side I didn't have my period for about a year and a half.

I was sixteen when I finally came off of the steroids, after a long process of weaning, but I was around 20 by the time I felt the majority of the side-effects finally wore off. However, even to this day I am covered with striations across my lower back and around my arm pits, something that I could try to tackle with laser treatments but probably won't. I like to think of them as my tiger stripes. Most people confuse them for some sort of bizarre tattoo.

I was relatively lucky in terms of how my peers responded to me when I returned to middle school after a two month absence. The closest thing to ridicule I experienced was being called "Marty", in reference to this awful 90's movie in which Martin Short's face swells after being stung by a bee. But that moniker was given to me by a guy who was one of my best friends, and even "went out" with me for a spell, moon face and all. Who knew middle school romance could be blind? In some ways the moon face was a hugely positive influence on me. It made me a stronger kid who couldn't be bothered with what other people might think. I was too busy enjoying the privilege of eating solid food again to care about my looks, or anyone beyond my family for that matter.

I'm not about to blow smoke and pretend I'm not relieved to have my normal face back all these years later, but when I think back to that time of my life I still value the experience and try to remind my jaded, cranky adult self of the lessons learned by my adolescent self. In the Internet age where everyone is fast to share their (often misinformed) opinion, it helps to remind yourself not to give a toss what other people might think of you.

Poop attack!

My love for io9.com grows with each and every story they post that involves poop. Above,"A 1793 map of England firing a tsunami of poop at revolutionary France." Amazing, although, considering my French heritage, I wish things in this cartoon were the other way around.

If You Gotta Mess in Texas

...I hope it will be in the port-o-potty sponsored by yours truly! That's right, this Sunday, March 18th the annual GAYBIGAYGAY event will be held in Austin, Texas and one of the big pink pots will be adorned with brown ribbons and tips for pooping your pants courtesy of moi.

I have yet to have the pleasure of attending, but GAYBIGAYGAY a big, queer-friendly outdoor party organized by one of my buddies from college who I guarantee knows how to show you a good time. There will be food and music, and there will even be shuttles to get you to and from the location. Check out their Facebook event page and website for more info, and take lots of photos for me if you go!

Now We're Solid

Ashford & Simpson - Solid by trashfan

Yesterday I ate a substantial amount of solid food for the first time since my cat died. It's mostly been soup, crackers and cheese for six days. But then a friend from California gave me some cookies - medicinal cookies - and boy did I rediscover my appetite. I spent the better half of Sunday stuffing my face. I didn't realize it when I woke up, and I didn't have to go before I left the house, but by the time I got off the train I was high-tailing it to Starbucks for a little public restroom action. I'm pleased to report that my grief diarrhea has subsided. I'm still down and I expect I will be for the next few weeks, or at least until the ashes come back and I've settled all the billing. Death is a hell of a business.

On a lighter note, I was sending an e-mail via Gmail and wound up browsing the emoticons. Did you know there's a turd-with-flies animated emoticon??

Love,
Li'l Crohnsie

Grief Sick

One of my biggest problems is that I manifest my feelings physically, especially bad feelings. When I'm anxious I feel a wave of heat envelop me. I begin the tremble and I feel the need to pee, poop and barf all at once, even if there are no rounds in the chamber, so to speak. When I'm heartbroken I have largely the same experience. And today, I am heartbroken.

Yesterday, with little notice, we had to put one of our cats, Chester, to sleep. This is the cat that I have had since the day I graduated college. When I went to the shelter she was the only cat purring in her cage. She purred the whole ride home, even while she pooped herself and even during the resultant bath. She let me hold her like a baby, wrap her around my neck like a boa, and tuck her under my cheek like a pillow at night. She has been my constant companion for the last nine years, and I always thought she'd be with me for the next ten. I explicitly told her when she was a kitten that she would have to be with me until I hit 40. She's seen me through failed relationships, unemployment, illness, you name it. For years it was just the two of us, and when J entered the picture she took to him immediately and became a daddy's girl unlike any other. Shortly thereafter our second cat, Vikter, came along and she welcomed him with open paws. I have more photographs of those two spooning each other than I know what to do with. For four years we've been a perfect little family.

About a month ago J and I rescued a Siamese off the street, and he has been living with us ever since. When Chessie began acting depressed last week we though it was an emotional reaction to having a new cat on her turf. We started spoiling her more than usual, but I began to suspect something serious was going on when she didn't respond to extra attention, wet food and poached chicken. The real litmus test was a visit from my brother this past weekend. When she didn't throw herself all over him, as she normally would, I knew it was time for a vet visit. I went in with hopes that she might need a tooth pulled, or perhaps had something treatable like diabetes, but that was wishful thinking. She was severely anemic and upon taking her to the animal hospital we discovered she was full of aggressive lymphoma. He intestines were so damaged that even if the cancer could be treated with chemo, she was more than likely going to perforate and die painfully anyway. Despite my own hurt, I'm glad we were able to give her a peaceful end. She had been hiding her sickness for a long time and at any point I could have come home to find her dead or writhing in pain with no idea why. I know it's lucky that we were able to discover the problem with enough to time to say our good-byes and thank-yous. I'm devastated, but keep reminding myself of all the children in the cancer center up the street from my office building. That cat was one of the great loves of my life, but there are far greater pains in the world than my own.

Unfortunately, no matter how logically I can view everything and how lucky I feel to have had the time with her that I did, my body can't register things the same way. I have barely been eating, and I have a nasty case of grief diarrhea. I keep getting headaches from crying and not eating, but I can't take Tylenol on an empty stomach. (I tried the other night and it came right back up.)  I'm sleeping at night, but I wake up exhausted.
I just want to be as far away from yesterday as I can be.

Thankfully, one of my neighbors is a trained chef with a background in nutritional cooking and healing through diet. She also happens to be an avid animal lover with her own history of saying good-bye to beloved pets. Yesterday she invited me over and fed me some amazing home-made chicken soup with brown rice that had been soaked over night to make it more digestible. Thank goodness for amazing, nurturing friends! I'll never forget during my last flare-up when she stopped by with home-made miso soup for me. She really knows how to heal with food!

So what about you, my few but valued readers? Do you have any tips for detaching your physical state from your emotional state? Do you find that having IBD makes you more prone to a physical reaction to emotional upset? Please, share away.

xoxo
LC

Poop Strong!

Meet Arijit.

Arijit is a 31 year-old PhD student, currently undergoing treatment for stage IV colon cancer. A friend whose husband went to college with him passed along the link to his website, poopstrong.org. I hope you will visit and cross-post to your friends.

In the past year alone Arijit's medical costs have maxed out his insurance provider's lifetime limit, presenting him with the threat of medical bankruptcy. Although he hopes to regain coverage in about six months, treatments in the interim could cost as much as $100,000. To offset costs Arijit has gotten creative by designing "Poop Strong" and "Arijit Loves Me" t-shirts, as well as other merchandise which he sells on his website. Should he receive funds in excess of his medical bills, they will be donated to the University of Arizona Cancer Center Patient Assistant Fund.

I absolutely love Arijit's designs and his sense of humor in the face of what I can only imagine is a thoroughly draining experience. I definitely intend to get myself some Poop Strong merch! Please check out the Poop Strong home page to read more about Arijit and peruse the goods.

CCFU?

So, I've had my criticisms of the CCFA in the past, and was myself once threatened to be booted from their forums. So I wasn't too shocked today when the guys at SCD Lifestyle linked to a post by Crohn'sDad about getting formally banned from the CCFA community pages. I haven't bothered with the CCFA page for a while, but apparently he broke the rule of making treatment-specific suggestions and making "tasteless posts" whatever that means. As an advocate of the SCD diet and alternative treatments, it seems like Crohn'sDad wasn't too welcome by the CCFA.

It's their page, they can do whatever they want, and being that I never read the posts in question I can't necessarily defend them....but I still think it's lame to boot someone who wants to act as a resource and help people. If you don't know by now that you have to take the information you read on the Internet with a grain of salt and do your own degree of research to verify the advice you come across, then you probably shouldn't be online to begin with. Neither the CCFA nor any other organization can control that.