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Long, hot summer (and staying hydrated with an ostomy)

I’ve been having a bit of a rough summer. Actually, that’s probably even too strong of a word for it. I honestly don’t really know how to describe it. I’ve been feeling fine, I haven’t had any Crohn’s or ostomy issues. I’ve just been pretty tired. Too tired to wake up in the morning and go for a run. Too tired to do a whole lot of extra activities. Every morning it’s a fight against my alarm.

I don’t know if this is the case, but I feel like it’s related to my hydration, which has been… pretty dismal. I’ve written on here before that I’ve been having hard time staying hydrated recently. It is always a struggle for me, but for some reason, over the past few months it’s been even harder. I do my best to drink 3 liters a day, but that is a really hard thing to do every single day. And honestly, I probably need to be drinking even more than that, but haven’t worked up to it yet. But even on the days I do drink that much, I still wake up in the morning feeling dried up and often dealing with a headache, which is another reason getting out of bed has been hard.

water bottle hydrate hydration liquid h2o drink stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy ileostomy stomaI wish I knew of a way to fix it. Believe me, I have tried lots of stuff. I flavor my water, I try to spread it out during the day. Right now, I have an alarm that goes off every hour to remind me to drink 8 oz. I drink electrolyte drinks. Not the sugary ones, I stick to ones that have the good stuff with out all of the sugar (DripDrop or Nuun are good options). They definitely help and I would drink more of those but it starts getting really expensive after a while. And still, it just seems like no matter how much I drink during the day, it’s never enough. And I not only have to worry about my everyday health and all of the things in your body that require water, but I’ve mentioned before that my ostomy output is very thick and if I don’t stay hydrated, I can easily get leaks or blockages.

And that’s not even taking in to considering how annoying it is to have to run to the bathroom every 15 minutes. I finally had gotten away from having to run to the bathroom all of the time when I got my ostomy, but apparently I have not. It’s just really inconvenient when you constantly feel like you have to pee.

I have to believe a large part of my issue is due to the weather this year. I live in the South, so I’m used to the heat. In fact, it’s been a fairly mild summer compared to years past, but oh my gosh, the humidity this year has been insane. And I think it’s just hit me hard.

Unfortunately, I feel like the only thing I can really do is just keep trying. Even though I feel like it’s not getting me anywhere. And I am someone who really loves the summer and the warmth and the sun and I hate to feel like I’m wishing it away… but I’m kind of ready for the air to dry up around here.

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The best part of chronic illness

I wrote last week about the hardest part of living with a chronic illness, and in doing that, I started thinking about some of the good things that have happened, too. I thought about how well I know myself and my body and how I’ve learned to pay more attention to my health. I thought about how much I have enjoyed all of the good days and learned to live them to the fullest after experiencing the bad days. I thought about how thankful I am for all of the great things I have in my life. But mostly, I thought about all of the amazing, incredible, strong, inspiring people I have met along the way.

Crohn’s disease has changed my life. Having an ostomy has changed my life. I can never regret them because I honestly don’t know who I would be without them. They are ingrained into my identity and the person I have become. Living with them has brought me to exactly the spot where I am right now. And you know what? I am totally fine with that. While things are far from perfect in my world, I am so thankful for the people in my life and all of the things that I have been able to accomplish and be a part of over the past 28 years.

I lived for 13 years without really ever knowing anybody else who had been through the same thing as I had. I learned to accept the loneliness and hide what I was feeling really well. But once I started speaking about it, I found a whole new world of acceptance and inspiration. I have formed bonds different from any I have ever known. I have made friends who I hope will remain friends forever. And that’s the best part of living with chronic illness.

That chronic illness makes you different. It makes you experience the world in a way that others who have not dealt with chronic illness could never understand. And it can make you feel like an outsider. It can make you feel alone.

But finding a community of people who know what you’ve been through and have walked in your same shoes… it’s an incredibly freeing feeling. I think one of the things we strive for most in this world is to be understood. Some people search for that their whole lives. I consider myself pretty lucky to have found it.

These people… These people make living with a chronic disease worth it.

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stephanie hughes stoma ostomy ileostomy stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog

Out of the Bag: What to wear with an ostomy

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For me, one of the scariest parts about having my colon removed and getting an ostomy was thinking that I would never feel comfortable in my own skin again. I was afraid I would no longer feel like myself as I would be stuck wearing oversized and unattractive clothes. I’m so thankful I was wrong.

What has your experience been? Have you learned any tips for dressing with an ostomy? Any clothes you find work well? Or ones that don’t?