ostomazing!

hi my name is megan, i'm 19 and my body hurts me • diagnosed with ulcerative colitis in october 2015 • currently recovering from the second of three surgeries to construct my j-pouch • been on 40mg of prednisone for two years • taking a year off school to finally recover • just trying to get by with poop jokes and relatable content 🎉

[fibro-larious]

Me: I’m doing too much. I need to rest and take care of my body.

Also Me: I’m not doing enough. I need to get more stuff done.

[colitisblues]

If my body could like, I don’t know, chill? For a second? That would be great.

[colitisblues]

alright, uhhhh!!!

advice for a high output ostomy? i threw up last night, first night home, and i’m scared about becoming severely dehydrated.

[colitisblues]

so like??? it's really weird havin stuff come out of your rectum when it's not attached to anything??? what is going ON DOWN THERE PLEASE DON'T MAKE ME PUSH I HAVE A VERY SORE INCISION

[colitisblues]

this is my first time with a new wafer and a new bag and my first time with an opaque bag and i'm fresh out of the shower y'all are SO right this is the bombdotcom i feel great i wanna bop around but i'm gonna just try putting on clothes that aren't pjs first

[colitisblues]

MY OSTOMY BELT IS MY BEST FRIEND

[colitisblues]

big mood: icing my asshole at 8am

[disabilityhealth]

I’m professionally exhausted

[stckwll]

[colitisblues]

here's my facebook post announcing my surgery...

I don't ever write these long posts but this is kind of a big deal and I think I'm entitled. If you've spoken to me (or my parents) at all recently, this is old news for you, but for those of you who are hanging out on the sidelines, here's the official update on my life. Gonna try to keep it short and sweet, but there will probably be a TLDR at the end anyway. Item #1: I'm taking a year off of school to focus on my physical health situation. Item #2: A week from today I'll be in the hospital, hopefully doped up on copious amounts of pain meds after successfully completing the first of a series of three colorectal surgeries. Item #3: I'm having my colon removed, ladies and germs. After two years of struggling to find a medical therapy that would push my ulcerative colitis into remission, I've hit a wall. Unfortunately, I'm out of options short of hiring a witch doctor and a full colectomy has become "inevitable." If nothing else, though, at least I can say I tried. I gave my body a fighting chance and I did what I could to hang onto my large intestine. The thing is though, medicine isn't perfect and while research is still being conducted and new drugs are being developed, the reality of the situation is that I can't live my life this way. In addition to dealing with the inconvenience and anxiety associated with frequent bathroom visits, I've been battling overwhelming fatigue, exhaustion, pain, malnourishment, weakness -- you name it. I like to think I carry myself well and that I put on a brave face with my 3.5 GPA and my smiley summer travel photos but I've been on high doses of corticosteroids for the entirety of these past two years with the exception of a few stray months. In addition to the symptoms of my colitis, the side effects of these meds have been completely destroying me. Give that a quick Google if you feel so inclined. But to stay on prednisone long-term could potentially have life-threatening consequences and I'm not having it. They don't help nearly as much as they hurt and after all this time, I'm tired. I'm sick and tired and I'm sick and tired of being sick and tired. And as scary as surgery (and the pending recovery) is, I've been equally afraid of living an incomplete life. At nineteen years old, to feel this trapped in your own body, trapped in bed while your friends grow, to feel as if there's no way out... it's crushing. I've been crushed by my IBD. And that's okay. These surgeries are going to help me take my life back. Yeah, I'll have an ileostomy for six months and I'll be in pain frequently and I'll be stuck in bed again, but at the end of it all, I'll be pain-free. I'll be able to eat without worrying so much about what'll happen when I do. I'll be able to exercise without feeling faint. I'll be able to sleep through the night for the first time in months, go on roadtrips, focus on what actually matters to me instead of only what requires my immediate attention. I'll be able to do so many things I long since gave up hope of doing. I'll be a new woman, essentially: a new woman given the promise of a more fulfilling life. What a gift that is. Item #4: I'm more terrified than I've ever been. Item #5: I'm more hopeful than I've ever been. TLDR; I'm having my colon taken out. It's scary as all hell, but I'm gonna be so much better off by the time summer rolls around. (Also gimme Netflix recs, pls & thx.)

[colitisblues]

I'm in a full flare! on 40mg of prednisone! all I have to do! is make it to October 5th! and this stupid colon! will be out of me! but holy shit! full flare! FULL FLARE! HELP ME!!!

[crohnielife]

chronic illness skills:

-really good at getting blood drawn -sleeping -tv marathoning -doing everything in pain -know the best heating pads -will sit on the floor if there are no chairs -smarter than doctors sometimes tbh

[wheredmycolongo-blog]

Your surgeon took your colon, now what?

This is a scary ass operation you’re going through. I’m not here to say it’s not. Your life is going to change drastically - hopefully for the better compared to where you were at a few months back. But the truth is you’re not going to realize that for a while. You’re going to feel stigmatized, possibly in shock, and with a penetrating realization that there is no going back now. But you also probably have a morphine drip to click to your hearts content every seven or so minutes. Sweet, sweet morphine. And no joke you’re going to need it after that operation. Here are a few things that’ll most likely follow immediately after surgery.

You’re exhausted. Yes, you were just out for four-plus hours thanks to the annestician’s nap inducing skills but your body just went through a huge operation. I really suggest having made a calming playlist in advance and if you couldn’t listen to it while in surgery, then see if you can get someone to plug in your earphones in recovery. They say classical is the most calming, and I’m not knocking that but if jazz is your thing, do jazz; if you like rap, you can find the instrumental tracks pretty easily; and for everyone else there’s Explosions In The Sky. The key is non-verbal, according to many people who specialize in this kind of thing. Although there is also a huge market of spoken word calming tracks developed specifically for pre-during-and-post op that you can find online or on Spotify (which I found incredibly useful for this purpose.) I’ll add some helpful links to the resource page (which is in dire need of an update anyway) soon.

Pain. You will be in pain. You won’t know it thanks to your friend the morphine drip. Keep this where you can easily reach it at all times. It’s bound to fall off to the side of your bed or something at some point but don’t panic. Just call the nurse and she’ll get it for you. But seriously, that little fucker is your friend. Now this operation means you finally FINALLY get to eat like a normal human being again. But it’s going to take a bit. You’ll still be on clear liquids the first day or two until your surgeon thinks your ready. And then… Soft foods. Which really means anything that isn’t a hard fruit. A good place to start is oatmeal and mashed potatoes. Also if you dont do well with starch and don’t want to test yourself too much jus yet, stewed apples or bananas mashed with cinnamon are really good alternatives. The key is porridge-like consistency. From there you can slowly move on to more adventurous fare depending how comfortable you are. Your body is still out of it from the surgery so your appetite isn’t going to be huge but that’s a good thing. And remember, this isn’t a race, you (best of best cases) have your whole life to eat foods you gave up on long ago.

Seeing your situation for the first time is not going to be fun. You may very well freak out, have a breakdown, not wish this fate on your worst enemy. These are all normal responses. Totally and absolutely normal. And it looks a mess at the operation site. While some patients have the option of more discreet surgeries where an invasive incision doesn’t have to be made, I have a nice scar running down from below my navel to my pelvis. And when I first saw it there were staples (which help hold the stitches together as your skin heals) making that otherwise straight, very neat line look all jenky. It was gnarly. There is no other word to describe it. You’ve also been suited up with a transparent pouch where you find a small bud at your lower abdomen. Your stoma. The end of your small intestine that now pokes out of your abdominal wall. This is very fucking strange. This might bring you to tears. And that’s alright, seriously it is. If you were comforted by this new accessory to your outward appearance you are either ridiculously optimistic or very very scary. Some people find that naming their stoma helps. I come from a family that names everything, we have a very strange capacity for bringing inanimate objects to life. However besides ‘bud’, which is really a term surgeons also use to describe stoked because that’s what they look like - little shiny unopened flower buds, I have not found this to work for me. Maybe it does for you, maybe it doesn’t. Try it out and see if it helps you cope. I saw one person give his stoma the name “Stommie P.I.” that stoma obviously had a backstory and everything going for it. I mean, that bit of small intestine is probably freaked the fuck out, too. It’s used to the warmth of your insides and now is out there in the cold, cruel world with your epidermis. Be kind.

And remember that crying can cause pain. As can laughing. And coughing. And especially hiccups - which is the worst because apparently hiccups are quite common post abdominal surgery. Why do all these things bring jagged knife like stabbing pain that leaves you scared for the next round? Your diaphragm is behind your abdominal wall, when that jerks your abs do too, they clench and release. Your abdominal muscles are sore as all get up, and will be for a while. When you get around to having to go to the bathroom to pee you’ll go through a few more days of extra pain - which again is absolutely normal (not that I knew so I was under the impression something had gone wrong in my surgery that affected my bladder). It’s a pain that comes from the right side of your body. You’ll know when you feel it. And it’s because apparently you use your abdominals when you pee. Who knew. Now you do. It’s going to take a few more weeks for this to fade out but it will.

The first time experiencing your stoma at work, bag changes, all that are a whole other story that I’ll post about soon. If I think of more “what to expect” tips I’ll be sure to tack them on. If you’re heading into surgery, good luck and I hope this has been helpful. If you have any questions feel free to contact me or post here.

[colitisblues]

been awake nearly five hours now and I'm still in pain and nauseous and crying in this fuckin bathroom with 20 minute bed breaks!!! I was doing so great yesterday!!! prednisone, please!!! help me!!! my god!!!

[colitisblues]

today's been a rarity for me (shout-out to the devil's drug, sweet fucking prednisone) in that I was able to eat three meals today and I've been mostly pain & discomfort-free AND able to keep my frequency out of the double digits! (holy fuck! that never happens! ever!) but still, when I feel this marginally better from where I'm generally at, it fucking sucks to turn around to a toilet full of blood again. even when I can almost forget that I'm sick I can't really forget. shit bums me out.

[colitisblues]

back on prednisone. great.

[colitisblues]

god, i really can’t move today. been up all night and i still can’t sleep. the good new is that my body as finally stopped trying to expel everything in my system (because it’s all out now). i’m so tired. i’m so hungry. i’m so fatigued. i can’t even get in the shower right now, and that’s the one thing i need to do every day to feel like some semblance of a person. sos.