I have Ulcerative Colitis
It's been a while since I've posted anything here, and stuffs been afoot. At large, I've been working on my omega fic which has gotten some really positive thoughts, which gives me the happy giggles...but of course, have been caught in the whirlwind of self doubt and loathing of my writing which characterizes my life so infuriatingly.
I have thoughts on several things I've seen lately; Ender's Game, still waiting on Stepbrother so I can rewatch Puella Magi Madoka Magica so I can take some hardcore notes. I rewatched Princess Tutu and fell in love again, and just now my own original work novels have been barking for attention. Usually they wait in the back of my mind, like a serpent in the depths of the lair, knowing that I at least seem incapable of really writing them until I have a writing partner.
Anyway. Lots of stuff going on, including radical hair loss, which is helping with my overall mood.
So. Let's talk about Ulcerative Colitis. For shits and giggles.
And because I need to talk about it.
Warning: This blog post speaks graphically about disease and the latter half of the digestive system. If you are upset by discussion of excrement or ill health I do not recommend you read this. There are some dark thoughts present.
Ulcerative Colitis is an autoimmune disorder. You've probably heard that word, it's becoming a bit more well known than it sued to be. Ulcerative Colitis causes the immune system to attack one's own healthy colon, raising ulcers inside the colon which bleed. Autoimmune diseases are not contagious. Autoimmune diseases are not curable, and no one knows exactly where they come from, except that certain people have a genetic predisposition towards them.
Now I can and have made many jokes about this disease. It's a coping mechanism. You have to find it funny because, well, how else do you endure? But I'm not going to do that here. Not today. I really just want to talk about this today because there is no poster child for UC. People don't talk about it, like they now do with other diseases, mental and physical.
UC along with Crohn's are the IBS (irritable bowel syndrome), and, unlike say, Lupus or Rheumatoid Arthritis don't get as much press. Because no one wants to talk about bloody poop. They just don't. We as a culture have a hard enough time adjusting to the fact that women poop at all, let alone that there are women who have a disease which affects their bowels. Because no one wants too discuss that part of life. Better off left in the powder room. I finally saw one of the commercials for meds for my disease. It's hilariously vague about what is really going on. But, you know, silence can be a dangerous thing.
And I was quiet for a lot of years. When I was diagnosed at 18, in 2001 (HELLO, DATE ME WHY DON'T YOU) I didn't fully understand what was going on. I knew I had bloody stool, which meant somewhere my insides were bleeding. I knew my school was screaming at me to come back. And I was a teenager who already had a difficult social life, and when you fall off the map for months everyone wants to know why you're not in school and what is wrong with you if it wasn't mono. And I didn't want to say 'hey I got a disease that makes me have bloody shit and people want to stick a camera up my ass' because what kid wants to say that to their social group? So I obscured and I promised my teachers it was all okay and I was sorry I'd missed so much school.
Let's talk about schools another time, yeah?
But think about that. My life have been irrevocably changed to such a degree I could not yet comprehend it, and I was apologizing to my teachers. I had no idea what an autoimmune disease was. The reality that it was not going to go away and get better had not hit. And it took a while for it to hit. For me to really get what this disease meant for me in the long run, and how my life would be changed because of it.
My introduction to this all was me, at eighteen, wheeled in to an exam room to wait for about ten minutes in the dark, alone, surrounded by the equipment for my first colonoscopy. I started to cry. I have never liked doctors, and this was all very frightening. Eighteen is not a magical age where suddenly you are an adult. Eighteen is one year from seventeen, and I was a very frightened eighteen year old whose bleeding insides had sent her to an old specialist for solving. My anxiety problems experienced some exacerbation here I'm sure.
My first gastroenterologist who gave me that first colonoscopy retired that year. I was given to an Indian doctor who was used to dealing with old people (no offense, whenever I am in the waiting room for a Gastro appointment I am always the youngest person by thirty years) and not a scared young woman, who he was often short and rude with. I switched doctors at some point and found out that my previous GI center was not well thought of. This one is better, though I still had an embarrassing episode a couple of years ago.
See, I have to be anesthetized for my colonoscopy. Over the years I've given so much blood my fear of needles has dissolved, but partially formed by being left alone in that dark examine room for my first scope and the fact I cannot be semi conscious while I feel the camera slithering through my guts and the slick burn of the thing going in-in-in my anus (with anal sex you bottom out. There is no bottoming out here.) I just can't. Well, they screwed it up last time, and didn't schedule me for the time with the anesthesiologist, but didn't know until I arrived at 9 that morning after my previous day of consuming only clear liquids. They were nice enough to rescheduled me for the afternoon, I just had to continue to fast and come back after a few hours. So I come back at 1, having had four hours to work up my anxiety to a fever pitch and not having eaten anything at all for fifteen hours after the 24 hours of clear liquids only and the dreaded jug of Polyethylene glyco, and the enemas (there is something very primal and difficult about the purging and willful disruption of the process of eating. It's not hard, but it does things to your mind andI firmly believe that messing with your body's process of eating does leave you emotionally vulnerable. Just think of how people behave when hungry and how they misbehave.)
Anyway, the anesthesiologist was late, so I spent 45 minutes getting more and more anxious in the waiting room. All this is acceptable, it happens, right? They finally moved me into prep where I put on the gown and wait another fifteen minutes holding my mom's hand. By this point I am crying quietly because I am hungry, hopeless and the anxiety has done nothing but build for about 5 hours. Because I get scared at the doctors. The anesthesiologist comes in and proceeds to be unable to find a vein. Right arm. Left arm. Back to right arm. I cry more. And I know I'm holding still enough because my mother is there as witness to attest to my compliance. As she goes BACK to the left arm, tries, then starts looking in my hand. I lost it and began sobbing loudly. So a blond nurse comes in and tells me I have to be quiet, I am alarming the other patients. As you might imagine there is not a lot of success there. But I try, and the doctor wants to know where I am, it's not like those curtains are sound proof, and the anesthesiologist GOES FOR MY OTHER HAND. I start to weep loudly again. So, imagine the hysterical, anxious crying woman patient, her mother on one side, holding still for the anesthesiologist who had jabbed in both arms and now both hands with no success. As a nurse, what is the best way to talk to your emotionally distraught patient while she is being poked with an IV needle? If you picked 'Climb on the bed in front of her and get in her face to tell her to be quiet' you are our winner. Yes, this professional woman decided to box me in by climbing on my bed when I already had two people near me and snap I had to be quiet.
I lost it. I don't remember what I said, I know it was nasty and ugly because my fear turned into violent anger. Fight or Flight, and flight was not an option at that time with people all around. When I think back to that moment, my cheeks wet with tears, doing everything everyone asked of me and so horribly frightened...I could have hurt her, if she had carried on. I had been pushed too far, and as stupid as I know my fear and anxiety are, I can't stop them. Thankfully she did get off the bed, took the IV stuff from the anesthesiologist and did the IV, just, Boom, done. I don't know what the fuck that anesthesiologist was doing. Then they drugged me and I don't remember anything after that. Other than being really embarrassed when I woke up and having the incident be commented on at my next appointment, so I just know I'm 'that girl who went nuts' to the staff there. Because that's who we all want to be to our doctors.
I relate this experience as a side note to my UC, that these are the kind of emotional situations you find yourself in, and even though intellectually you might know they are ridiculous, it doesn't stop how I feel.
My life with this illness has not been an easy road. Your disease does go into remission, where it sleeps, deceptively silent in your gut. And you can pretend it isn't there, for years, even. Then for no reason at all (though stress can bring them on) it will burst up into a 'flare' where no matter how strict you've been with your pill regimen, you will open a few sores. You will bleed.
Not only that, you will begin a relationship with bathrooms. You will gauge every place you go with how long you will be without access to a bathroom. If the ride is too long without a toilet, it's a no go. Or if it's a crowded place with one bathroom. Because when your body says you have to go, you have maybe a minute. Maybe. It's a strange thing, because there is no growing sense of 'oh, I've got to poop soon', that you normally accumulate. There is no build from 'Oh, I could poo' to 'I should poo soon' to 'I'm gonna go poo'. With ulcerative colitis, venting this bloody yuck has no build, no early warning. There is only a sudden frantic urgency of I HAVE TO GO NOW. And you best get to the bathroom, because you'll expel a bloody, muscusy liquid with some fecal matter like runny oatmeal. Yes, it's gross, but this is honesty, people. And when you have to go- an achy urgency- there is no holding it. You will go in your pants, if you don't make it. I have. It's humiliating and awful as an adult to be incontinent. The first time it happened I sobbed hysterically. I was at home, thankfully, but my mother had to tell me over and over again that it was alright because it is the most awful thing in the world. You feel so exposed and horrified, because if there's one thing drilled into us it's to control your bodily urges. And I couldn't. And I didn't pee. Pee is somehow clean, isn't it? Bloody mucus diarrhea isn't.
There's lower back pain too, and actually going to the bathroom outside of venting the bloody mucus can be horribly painful. When you go the abdomen tightens in waves, contractions as your body labors to push waste through an organ riddled with bleeding holes. You can be in the bathroom for twenty minutes, because all the equipment to make you go to the bathroom is out of whack. You get gas. Not really smelly, for me, but loud. Loud gas. There's side fun; pyrodermagangrinosa, like ulcers on the skin that are common in UC sufferers. Sometimes they leave unsightly skin tags, especially if you get them on your genitals. They scar. I have a big scar on my left breast where I got such a skin ulcer.
Of course, if you lose too much blood anemia follows, light headed and out of breath. I have been hospitalized twice, once because I was so vitally low on blood and a second time when a bad case of the flu sent my disease into a tailspin. I have been so low on blood it's hard to think straight, and you just consider floating away. How easy that would be. The first visit was overnight. The second hospital visit was just under a week. The nurses wanted me to wear these inflatable things that went over my legs to prevent blood clots. I was too tired and sick to care, but following up the earlier statement; never chain a patient to a bed when they will have a vital and sudden need to go to the bathroom. I didn't make it to the toilet. I refused the inflatable blood clot chains then, though the nurses were unhappy. I was unhappy about the traffic in my room when I crapped blood in the bathroom doorway. It was business as usual for them.
But here's what they don't really tell you, or research: UC fucks with your junk. Part of the problem with inequality in our culture, as far as gender research goes is that when studying medication they use a male default. The penis is a lot farther away in many ways, but my vagina shares a freaking wall with my rectum. All of my Gastroenterologists were unable to answer questions about the interactions of my female bits with the waste management system, excepting the obvious 'your pills and pregnancy don't mix'.
Now, I don't want to write this. I don't want to make this public because it is my body, and the horrible parts of it are my secret shame. But I think I'm tired of it being a secret. How will people know if they don't talk? How will I know whether or not I'm normal if I don't speak? How will other people know it's not just them? So, yeah. My UC hates my period. Invariably I encounter gastric distress during my period. Increased gas. Worse? Over the time, during months and years when I am in remission (No bloody doo, business as usual), my body has come to interpret the pressure of having to defecate as arousal. I don't find this sexy in the least, and the sensation goes away as soon as I go to the bathroom, but still, that is annoying and gross. It's like my wires have been crossed. Let's be clear, this is not a pooping-is-sexy thing, because, honestly, my life means I spend an inordinate amount of time looking at my own shit. This is not a hobby anyone wants. You have a disgusting uncomfortable bout of the runs you walk away from the toilet going 'Fucking Eriberto's Mexican Drive Thru I am never going back there again'. I do that, I spend five minutes analyzing the contents of the toilet bowl, scanning for blood and mucus and other well known signs that I am headed for a flare, rather than just writing it off as a disagreeable meal. Because I know the signs now. I know how I go to the bathroom, I know what consistency and color means because I HAVE to. It's a part of my health. So no. I don't think poop is a part of sex. So sometimes when my loins feel heavy I have to sit and pay attention to my body and ask what it really wants.
It goes without saying, this embarrassing disease makes it difficult to hold onto a date. When is the right time to tell a guy Oh, BTW, I've got this fun disease which shouldn't be a problem, and you can't catch it..but guess what? It will never go away. Lets not even get into the fine details. So far if you're honest and tell them up front I can tell you: you don't hear from them. And I'll be brutally and foully honest; I've only ever had one relationship. Haven't managed to work on a relationship long enough to do it again. I would never suggest this is the UC's fault, only that it couples very well with being a hyper intellectual with no self confidence and various nerd tendencies, as well as being picky and also, well, reluctant to let people in.
For meds, I started on Sulfasalzine, went onto Colazal. My entire colon is, ten years later, covered in scar tissue. UC has now consumed the whole thing where it was once only in part of it. I'm on Asacol now, the fancy name for mesalamine. I've been on Prednisone, a steroid. It's puffed me up like a marshmallow, because weight problems are always what I needed. In high school I suffered from severe cystic acne which had me on Accutane, which appears to have some link between the two, so I always wondered about the trade off between a scarred face and a scarred colon. Now the mesalmine is making my hair fall out. Hair loss, one of the many exciting side effects of taking an immune system suppressant, which is what mesalmine does, in a way.
I went gluten free in 2007. I avoid acidic foods. No gluten, which means no wheat, rye, barley or spelt. No coffee. No cow dairy. Tomatoes, pineapple, potato and eggplant too, though I do eat potatoes and tomatoes in small amounts. I stay away from hot spices. Anything sharp and acidy. I was never a big cola drinker, but now I don't drink any carbonated drinks like that. Have I given up sugar or caffeine? No. But I stick to the GF thing and try and baby my stomach.
I'm scared. I'm scared of having my colon removed. I'm scared of getting cancer. I'm certain that this is my death, or will be the cause of it.
I like to laugh and talk about the zombie apocalypse, but the truth is I wouldn't last long. In a world without my medication I'd have a year, maybe two. I'd bleed and die from the inside.
I've been ill with this since 18. It's very strange to know a bodily collapse at such a young age. To know a breakdown and the humiliation of processes we have come to expect at the end of life, but not a a young woman starting out. To know it is my own body doing this, and not like cancer, not a malignancy growing inside, but my own body, is sometimes one of the hardest things to deal with. Unfair, I suppose, but the unfairness has never really bothered me, someone has got to win that jackpot, and there are worse things. Still, I've felt like, for years, it's my body trying to evict me. My own body hates me and wants me gone, so it eats me from the inside out. It eats until I bleed from my own ass, my life essence mixing with my natural waste. It feels like a metaphor for my worth, in dark times. It's not going to kill me like cancer but it isn't an on board parasite either. It's the part of my body that is supposed to protect me, and instead it turns on me in one of the more vital processes. Eating.
That's like the entire police for one day deciding they're just going to shoot people while they're on the bathroom.
No, I've never joined a support group, though I should probably. That's actually an variety of care for mental health professionals: chronic disease. And yeah, some people deal with it better. Some people take it as an opportunity to be unerringly positive and speak in motivational phrases about adversity and overcoming and yadda yadda and when has Oprah booked them again? I can't quite manage that.
You'll note a lot of crying. I'm a frustrated cryer. I can be really angry or frustrated and cry, not because I'm sad, but because that is just how I am venting the emotion. That is also unpleasant, because if you aren't a frustrated cryer, you won't know how irritating it is to be trying to express an emotion while being hampered by tears, which some people think are a blackmail tool. So I cry, but I'm not a total wreck.
So while some people deal with it better, some deal with it worse, I guess I'm middle of the road...and really, that's the journey I want to share. That of someone who is neither exceptional nor destroyed. Probably it's where most people linger, if they have an illness that becomes a part of their life. We can't all be fortified into chipper perfection.
Why I shared this. Not that anyone reads this blog, but...I guess I wanted to say this, even if it's to empty air. Because I live with this, but I tell no one. I've tried to be more open as the years go on, but this is TMI territory. Who wants to listen to most of this? Sure your friends will listen to all your feelings, but who really wants to sit down with their girlfriend and hear the minutiae of how she shits? No one. And I don't even think I could verbally express it. But I can say it in writing, and that's something.
So I'll leave it at that.