4 a.m.

As time goes by and the date that is exactly one month before my last surgery comes up, I keep thinking how unbelievable this whole process has been. I am having a lot of trouble in this phase of the series, a lot of burning, itching and flange issues are making this part really frustrating and hard to deal with. I still look down at my stomach almost 8 months later thinking, “what the hell?”

My flange came off probably twice in the middle of the night after my first surgery and both times I remember thinking, “this is so annoying.” For those of you who don’t quite know what a flange is, its the Band-Aid type looking device that my actual pouch sticks onto. It goes around my stoma (I HATE that word) to protect my skin. Unfortunately, since this time my stoma has two openings and the second is hard for me to see, a lot of stomach bile and acid are getting underneath my flange, causing skin irritation and the flange to not stick anymore.

Most of the time when your flange comes off it’s out of laziness, not wanting to get up in the middle of the night to change or empty your pouch. I can’t remember the last time I didn’t have to get up at 2, 3 or 4 a.m. to go to the bathroom for something. To be in pain, to throw up, to cry, to take a bath to try to soothe my cramps, to change or fix my ostomy, or to clean up after my detached flange.

I’m not complaining, more venting my frustration. Last night was in fact a happening of laziness, I remember looking at the clock with stomach bile all over my shirt thinking, “looks like I should’ve made that bathroom trip at 2 a.m.” But sometimes it’s SO hard! Now that I feel good, I don’t want to have to get up in the middle of the night and go to the bathroom. I’m so sick of being trapped by the bathroom! I can’t wait to feel what its like to not have to wake up at ungodly hours and drag myself across the hall to sit on the toilet and do my thing.

I have so much respect for people with permanent ostomies or those who have one for long periods of time. It must take so much patience, so much understanding to have to put up with all of this. When I explain how my I’m dealing with my ostomy now, I often reply, “It’s a lot of work.”

Because it is. It is a lot of work to motivate myself to change my flange every few days (or when it falls off) and look at my stoma, which I still have a lot of trouble with. There are a lot of steps that are required and much careful cleaning to make sure that you are preventing skin irritation, correct placement of your flange all while cleaning at the same time. Not to mention if you have a leak while you’re changing your ostomy, which is annoying as well.

Most girls my age don’t have to deal with this, they are putting on shirts and pants and not thinking twice about whether the bottom of their pouch sticking out, if their pouch is puffy and sticking through their shirt or timing their next trip to the bathroom pretty quickly after they eat. When I sit with my sisters or with other girlfriends I can’t help but to be envious of their ostomy free stomachs and how they don’t have to worry about going to the bathroom because they have their very own colon that can hold what they had just eaten. Lucky.  I haven’t worried about what I ate, where the bathroom is or the next time I’ll have to go in a few years.

I have found that I am dreading eating again, because I am in the bathroom a lot more after this surgery dealing with my pouch. I’m still a prisoner to that bathroom, just not a prisoner to the pain anymore.

I am prepared to be going to the bathroom about 8-10 times a day when I have my jpouch, but I am looking forward to doing exercises I can’t do because of my flange or ostomy, wearing my regular clothing again without care, and going on vacation and wearing a bathing suit proudly sporting my new scars.

This is all just a part of my life now, whether it’s 4 a.m. or not, I have to fight through it.

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4 thoughts on “4 a.m.

  1. Even though I’m not at this point yet of surgery which my dr happily reassured me of today on the phone, reading your posts about your ostomy has opened my eyes even more, it gives me information no one else but someone whose had it could tell me. I’m intrigued to hear about the whole experience and how well the surgery goes once your j pouch is created. Good luck!

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