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.

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

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?

The hardest part of chronic illness

No matter what kind of disease or illness you are talking about, chronic disease is hard. And the hardest part is, well… the chronic part. The permanent part. The forever part.

I can’t tell you how many times I have wished just for one day to not have to deal with everything that comes along with it. Just one day completely disease/illness/condition free. Just one day where I could completely erase the words “Crohn’s” and “ostomy” from my mind.

stephanie hughes stoma ostomy ileostomy stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blogFor the first 13 years of living with Crohn’s before my surgery, I rarely got a break. I had a few years during high school where I would feel pretty normal most of the time, but would still deal with a difficult week every month or so. But since I went off to college in 2004, I don’t think I’ve had a day where it hasn’t been present in some form or another, or where I didn’t think about having to quickly find a bathroom or worry about smelling up the one in our dorm or think about the handful of medication I had to take. It was always there. Reminding me that my colon was not my friend.

Even now, I’m so thankful that I have spent the majority of the past two years free of symptoms from Crohn’s, but I will never again be a healthy human being with all of my bodily organs. I will always have to deal with the ramifications that come from not having a colon.

I wish just for one day that I didn’t have to push my poop out of bag. I wish for one day I didn’t have to try to down 3+ liters of water and even then still feel dehydrated. I wish I didn’t have to think through every item I eat to consider whether or not it may give me an issue. I wish for one day I wouldn’t have to have a piece of adhesive stuck to my stomach, causing irritation and itching my skin. Hell, forget one day, just one hour would be nice! But I know that will never happen.

I’m stuck with it. For now and forever. Til death do us part. There will never be a Stephanie without an ostomy. And there will never be a Stephanie without Crohn’s disease. And I hate to say that, but I don’t see a cure coming in my lifetime. I know that sounds negative and I really I hope I am wrong. I think there are a lot of good things coming to be excited about. Things to push us into remission and deal with the symptoms, but those aren’t cures. Those won’t do away with the permanent nature of Crohn’s disease and ulcerative colitis.

I was given the option of trading one chronic condition for another and I took it. I knew the decision I made was for keeps and that once I went through with it I would never be ale to go back. I don’t regret it for a minute, but there are those days… those days that I just wish I could take even a short break from the permanent.