.:ulcerative colitis and me:.

you know what sucks? ulcerative colitis.

out of all the glorious designer diseases that one could be stricken with…cancer, Alzheimer’s, cholera, hepatitis E… leprosy for god’s sake…i get stricken with this one.

alright…i jest. i guess i feel…uh…lucky?…that i only have ulcerative colitis rather than any of those other afflictions. i suppose i’d rather have the runs a lot than, say, have my nose fall off in the middle of dinner or something.

but MAN…MAN OH MAN…UC is NOT FUN AT ALL. i suppose you could ask yourself what disease IS fun. the answer is obvious…but UC is the one i get to live with, and so i will take the liberty of whining about it when i want.

let’s be blunt, friends. i have to poop a lot when this thing is all nice and flared up. that’s really annoying because you realize how much of a slave you are to your own body. you can be driving down the road…out in the middle of nowhere…and all of a sudden, it can hit you. and where you folks with a normal functioning bowel can play ‘choose your own adventure’ and most likely have an agreeable outcome should you choose to ignore the ‘i have to go #2′ for another exit or five, i do not have this luxury.

the conversation with your body goes something like this:

bowel: “la la la la la this is fun…i feel great…good times and millions of dollars for all! vacations! sunshine! woohoo…uh…hey…wait…yeah, you’re going to need to find a bathroom.

you: come on, man. we’re in the middle of rush hour traffic. things aren’t moving. can you maybe give me another 6 minutes to find an exit with a gas station and then we’ll tango?

bowel: i will self destruct in 5 minutes.

you: but…i’m only asking for another minute. please…cut me some slack…i…

bowel: i will self destruct in 5 minutes.

you: DUDE. plleeeeeeeeeaassseee…it’s gonna’ be your fault when this all goes wrong…just hold on…

bowel: i will self destruct….in 2 minutes….

you:…oh, son of a…

there is no gambling. you either win by barely making it to the gas station…or restaurant…or side of the road…or really anywhere you might be able to relieve yourself. or you lose. and you know what losing means…

pretty embarrasing, huh? not exactly rockstar. not exactly coolest guy status upholding. not exactly american idol-esque.

and then there’s the pain. i’ve tried to describe it a couple of different ways to people. sometimes it feels like someone is squeezing at your insides with a really hot vicegrip…kind of like runners cramp, only move the cramp over to your midsection and multiply the pain factor by…five? ten? twenty sometimes? and sometimes it feels like there are a bunch of chuckling little elves who have decided that it’s time to throw on some razor blade ice-skates and do a little ice-skating routine within the many folds of your large intestine.

finally, what’s really frustrating is that:

1. nobody knows what causes it. you can be living a nice, happy, worry-free healthy life (like i was) and then all of a sudden you’ve got…this…thing.

2. treatment apparently has not changed for it in the past 30 or so years. treatment consists of attempting to alleviate the symptoms because…again…nobody knows what the real problem is.

some doctors/professionals will tell you that it’s all about your diet. there are many different fine bacteria that camp out in your bowel…and there is apparently one or several of them that your immune system doesn’t like, and so your immune system turns on to attack it and doesn’t turn off…hence the reason why your colon looks like it has rugburn. but nobody can quite figure out which one or several of those bacteria is causing it, so by eliminating as much as possible out of your diet, you will eventually fix the problem.

some doctors/professionals will tell you that your diet doesn’t matter, that it’s just genetic and that you can do nothing but throw drugs at it and hope that it will either cause the problem to go into remission or bring the problem to a more manageable level.

i’ve tried (albeit not incredibly hard and not incredibly intensely) to change my diet. i drink considerably less soda and caffeine products in general. i eat less red meat and try to eat more vegetables. i take my probiotics. i’ve tried to supplement with fish oil and aloe and flaxseed oil. i’ve done all of this stuff and it has had aboslutely no effect that i can tell. likewise, i’ve run the phamaceutical gamut. i’ve done asacol, pentassa, coloazal, xyfaxin, and prednisone. i even went and tried one of those drug trial things…but that left me worse off than i was at an emaciated and incredibly sick 140 lbs (i’m 5′11 and normally around 155-160).

and prednisone…i mentioned it above. let’s take a few seconds to chat about that. predisone is this great steroid that does it’s job for this disease rather well. first, it stops inflamation, and second, it helps supress your immune system. hooray for prednisone, right?

it’s probably one of the most horrific drugs you can take to treat a disease or other problem with your body long-term, as the side-effects are incredibly damaging. it saps calcium from your bones at a pretty alarming rate. it damages your kidneys. can cause you to develop diabetes. makes you retain salt…which makes you retain water…which makes you look ‘puffy’. it gives you moonface. can give you a hunchback. gives you ‘roid rage. makes you an emotional mess.

i was talking with my new doctor here last week at a visit, and he said something to the effect of, “i’d hate to see what your bones will look like when you’re 50″. well, buddies, i’m 31 now. 50 doesn’t seem all that far off.

as it stands, it appears that i have two choices. i can try this new stuff called remicade. while it sounds like it will work well, it’s apparently crazy expensive…and again, doesn’t address the problem…it only treats the symptoms of inflamation. or i can get surgery. and talk about not being a rockstar. the first couple of months, you get to wear a nice bag to collect ‘waste’…and then the second part of the surgery consists of using your small intestine to take the place of your large intestine by forming it into a pouch and then reconnecting it so that you function in a somewhat normal manner…somewhat normal meaning that you don’t have a bag connected to a fleshy hole in your stomach collecting unneeded/undigested…”stuff”.

i don’t know what to do. i know that i can’t go on living like i currently am. i’m not sleeping well. i’m grumpy. i don’t feel like i can be as social as i want. i feel uninspired. it’s really ‘effing hard. but at the same time, the whole idea of having massive, massive surgery and having to take off an extended period of time from work scares me. any thoughts? any suggestions? make me feel better please…

This entry was posted on Friday, January 19th, 2007 at 7:23 pm and is filed under General. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.