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.

9 thoughts on “The hardest part of chronic illness

  1. Reagan K Reynolds

    I believe it, love. I know this has been a tough reality. It has never been an easy life, but you have so much shining through. Even when you are exhausted of the hardship, others look at you and see inspiration and a legacy. You’re creating a marvelous story–a heroine against a hell of a plot. You inspire me to keep going no matter what.

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  2. Nancy

    I so understand what you are saying. While I don’t have crohns I do have anal cancer and lost my anus and rectum thus I’ve been dealing with an ostomy and it’s problems for about a year and a half.For me I have to ad blockages and small bowel obstructions to the things that go with it.The watching what I eat and the constant cramping from all the meds to keep things moving is the worst. I would love to have one day without any of it!

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  3. Nicole

    Just a reminder…there are no ostomies in heaven! Nor is there Crohn’s disease. The time spent suffering on earth doesn’teven compare to the joy and freedom we’ll have eternally in Heaven! I see where you’re coming from, and often feel the same way, but thinking of this gives me hope.

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  4. Lisa

    Today I saw an article re: bone marrow transplants to cure Crohn’s. Wouldn’t that be something if it’s a reality? I’m on my last leg of options before I will have to go through with the Ostomy surgery. I must admit I was having a difficult time with what feels like the inevitable but your blog has really helped me realize life goes on. You’ve done a great job of making it seem not as bad as I imagine it to be.

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  5. Elka Troutman

    Wow – a perfect day to write your post!! I don’t have Crohn’s, but have a permanent colostomy because of rectal cancer. I have a hate/hate relationship with my ostomy, but I know that they had to get the cancer out of my body (at least some of it) but removing my rectum and sphincter muscle. I also wish that for one day I didn’t have to poop in a bag, that I didn’t have something attached to me (someone called it my own personal septic system). Like you, not just a day, but one HOUR. You are allowed to hate this because chronic illness and pain is terrible. Keeping fighting the good fight – you are inspiring to so many people.

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  6. Jessica

    I with you sister!! I’m without a colon as well and now have a permanent ostomy. I also would not trade it for the alternative, but truly wish for a day of normalcy. I guess coming to appreciate my “new normal” is next on my list of things to overcome. Great post! You’ve said what so many of us feel! Hugs to you.

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    1. Lissette

      You do get used to your “new normal”. It becomes second nature, for good or bad! I, for one, can not see myself without my ostomy. Shopping is once again fun since I do not have to immediately pin point where every single bathroom is in case I have to make a run for it! Living without the continuous pain has been a blessing! I met and married the man who today is my husband with my ostomy and the biggest miracle, my daughter was born with me having an ostomy! You can make it the best normal you can get!

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