This is IBD

I am spending this World IBD Day in the hospital. This was definitely not my plan for this day. But I suppose it’s kind of appropriate since those living with Crohn’s disease and ulcerative colitis never get a break and they can be fine one day and hooked up to a bunch of IVs at the hospital the next. And that’s pretty much what happened to me.

stephanie hughes hospital surgery colectomy stolen colon ostomy blog recovery ostomies advocacy stephanie hughes bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy blockage obstructionLet me say first of all, though, that I am not in the hospital for a Crohn’s flare. But I am in the hospital as a result of Crohn’s disease and the surgeries I’ve had because of it. I’ve been dealing with some bowel obstruction issues since Sunday and they got even worse last night. When I woke up this morning, I still was having very little output, so out of an abundance of caution, especially considering my pregnancy, I decided to go to the ER. It’s now 11 hours later and I’m still not having a lot of output, or at least not anything substantial.

stephanie hughes IVSo here I lie… hooked up to some IV fluids and willing my ostomy to fill up with anything besides liquid! But you know what? This is one day for me. I am one of the lucky ones who has been put into remission because of those surgeries and my ostomy, but there are millions out there who are living with the ramifications of inflammatory bowel disease every day.

World IBD Day is supposed to be a day to set aside some time to raise awareness about Crohn’s disease and ulcerative colitis. But these diseases do not affect us just one day of the year. They affect us every single day of our lives, whether the disease is active or not. That’s what keeps me going when blogging and advocating seems difficult and exhausting. These diseases are difficult and exhausting, so I will keep doing what I can to make sure the world understands what IBD is and what it means for those who are diagnosed.

Yes, World IBD Day is a great thing. But no, it is not enough. And that’s not to say that every person out there should create some kind of platform and become a full-time activist. I just hope that we all remember the people who have suffered from and are living with IBD the other 364 days of the year and that we continue to fight for awareness and for a cure. And I pray that in my lifetime we will find that. And I hope that’s what this day stands for: a reminder of what we are fighting for and why we should continue fighting… every day.

7 thoughts on “This is IBD

  1. Beth Woodward

    You are in my thoughts!!! This is such an amazing time in your life with the pregnancy, I hope things get flowing and you get home to your bed soon!!! I’ve heard of baby moon trips to spas by the hospital totally doesn’t count!!!!!! I head in for a CT Thursday, to check for stricture, 4 months almost to the date of my colostomy surgery. When we are good we are good, then the switch gets hit and we are bad real quick!! :/. What doesn’t kill us makes us stronger, atleast that’s the song I keep hearing in my mind today!!! 🙂

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  2. janetmbrady

    I admire your tenacity and willingness to share with everyone! You take care of you while you are helping many! Hugs and best wishes for everything to be just what you guys want! Getting really, really excited about a new baby in the Hughes’ family!

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  3. Carmel

    Hang in there! I’ve had 3 pregnancies with an ileostomy and also suffered blockages. Very painful and scary but I got through it cause that’s what us crohnies do!

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  4. Rita Dduarte

    Hope you are better now i know how hard is to live with these diseases ,just had 3surgeries the past 1and i am recovering from that .is not fun ,hope the best for you and youre family ,take care

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