Crohn’s Hasn’t Made Me a Better Person

Crohn’s Hasn’t Made Me a Better Person


Perhaps I sound bitter, but I understood how people with serious chronic illness say that they are so much better, happier, more fulfilled, stronger, or a new person since being diagnosed with their disease. I have none of these feelings about living with Crohn’s.

Having Crohn’s has kept me from doing a lot, even little things, like being able to get off the couch or fixing dinner for my family. It prevents me doing doing lots of bigger things, too.

When my younger daughter was 14 she had a huge crush on a television star who was coming to our state. I couldn’t take her; I was too sick. I was completely bed-bound and basically unable to get up. So, my husband drove from his office an hour away, picked up her and her girlfriend, and drove another hour to take them to see the star. I really wanted to go. I wanted to see her face when she saw his face for the first time and got to take a picture with him and squeal like any 14-year-old girl can upon meeting someone she idolizes.

Instead her dad took her, and he brought his iPad with him. I was lying in bed, barely able to keep my eyes open, when she showed up on my iPad and I could see the crowd screaming, pushing each other eagerly to get closer to their idol. But then my husband was directed to turn off his iPad and I missed her actual experience.

There’s nothing fulfilling about having to run to the bathroom 20 or more times a day. There’s nothing happy about being told there is little that can be done to help you. There’s nothing fun about feeling good for a few weeks while knowing it will end soon. Right now I’m tapering and almost off of prednisone. I’m already worried about what happens when I go completely off. My birthday is in a couple of weeks, and then a quick trip to Florida planned right after that. What if I get sick again? What if I’m too sick to go?

But so many other people say they are glad for their illnesses. I see it most in cancer patients, and I think I get that. Cancer patients are very sick for long periods of time, but then most of them do get better — all the way better. The illness ends and their new life begins. I can understand why they feel their illnesses changed their lives for the better.

The flu also is a good example of the patient getting really sick and feeling miserable for a week or two and then getting better. Anyone who has had the flu certainly can appreciate the feeling of their life returning to normal.

But with Crohn’s Disease? All I can hope for is a new or better drug to come down the pike. One that might put me in remission for longer than a few months. One that isn’t painful to take and doesn’t have a host of side effects that could kill me.

I guess the positive thing about Crohn’s is that I have learned patience. I’ve never been a patient person, but with this disease you need to be. So, maybe one good thing has come out of it, but I’m not happy I have it. I’m not feeling accomplished, brave or more appreciative of my life. Sorry, but that’s just how I feel.

Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.

9 comments

    • Judy Walters says:

      Many people believe their illness make them better people — I hear tha a lot. I was trying to emphasize how my experience is the opposite.

      • Angep says:

        I totally agree with you, everything you say. I too have Crohn’s.ive sat and tried to think of one positive thing about this disease!!! I too have thought about other illnesses and the fact that often people get better but we can never be cured!! I also find we apologise a lot for saying how we feel!! Why should we really!!! We didn’t ask for this disease to invade our bodies!! Going back to the positives!! I finally found one!! The lovely people I meet in hospital and how during my stays I feel normal again because I’m with other people who have a disease too!!

  1. C says:

    It’s amazing when a writer can articulate how you feel so well that you imagine they are reading your mind. I love reading other people’s thoughts and experiences with IBD because it makes me feel less isolated and more connected. I continue to persist everyday with this disease, but I’d give anything to get rid of it or to have never gotten it in the first place. I do not doubt the amazing things I could have done without this disease and in spite of it. Our circumstances are so unique in that most of us are able to remember what it was like to be normal before our diagnosis and we strive to return to what we feel could be our true selves, absent pain, isolation and inflamed organs. We were able to form dreams and hopes in our minds of doing anything we set our minds to, until our bodies awoke with disease. I’m brave because I have no choice, I’m mad because I don’t deserve this, and I am absolutely not thankful for my disease. Everything that I do is in spite of it and I think I would be an amazing person without it. But I have no choice and need to take these obstacles as they come. I would never say that Crohn’s improved my life, I have improved my life despite Crohn’s and I wouldn’t shed a tear if it disappeared and never came back again.

  2. Tristan says:

    Judy. I know how you feel. I’ve been struggling with crohn’s for 20 years. The only treatment that has worked for me is at odds with employment laws. I bit the bullet yesterday and went for my first Remicade infusion. Having to chose between a drug that may kill me and being able to work is just another nasty no-win decision I’ve had to make. All medical choices for crohn’s patients are poo sandwiches without the choice of having it come with an olive or any other small concession. I don’t know if I feel I’m and better person but I do know that we all become more acquainted with these poor selections of choices — and agonize over them. It makes it difficult to find peace when this is the paradigm. I’m sorry to you and everyone else that has to live with this. What it does to us remains up in the air. Am I a better person? Only for my compassion for those similarly afflicted. Thank you for the words. Take care.

    • Judy Walters says:

      I have done Remicade. It helped for about three months and then I started developing antibodies, got pretty sick, and had to stop using it. I did find I was monitored very carefully thoughout the process. Good luck!

  3. mb gubaa says:

    Judy, I wish you would contact me. My daughter has Crohn’s and has been working with a functional nutritionist for a month. The turn around has been amazing. His name is Russell Mariani and his website is healingdigestiveillness.com He has been working with gut related issues for 40 years. It is all natural, nothing worked for her and taking prednisone was similar to taking a tictac. We were at the point of doing a small intestine resection or working with Russell. I am so glad we chose the latter.

  4. chris says:

    Thank you for this. Our 21 year old son was dx with crohns at 13, surgery at 18, now another flare, anxiety, depression. No school, work, its a real death of his and our hopes for his future, except for the “more tx are in the works” Ugh.

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