Tearing Down My Wall

I’ve spent the last eight years dissecting my every action, and listening to others who love me do the same.

“Is it something you ate?” They’ll ask me (not out of malice but in a genuine attempt to help). “Is it something you did?”

And I will wonder. No, that’s not honest–I won’t wonder. Every time I inject myself with Humira and I don’t get better, I feel somewhere deep in my bones that it is my fault–that it must have been something that I did.

When I wake up in the middle of the night and run to the restroom and start to shake with pain, I go through a mental list of everything I ate. It’s lonely late at night when my family’s sleeping peacefully, and it’s in these moments that I build the wall that separates me from everyone else.

“I should have picked the mushrooms out of that dish,” I tell myself.

“How dare I eat two solid meals in one day.”

When the pain doesn’t come and the nights are quiet, I sort through my every choice to find the secret to my relief. If I slept 10 hours the night before, I will sleep 10 hours again. If I ate soft foods, I will eat bread.

“Who needs pesky vitamins and minerals, anyway?” I’ll ask myself.

“I don’t. Not when I have the chance to feel like I used to again.”

But nothing lasts forever–it never does. I’ll know this when I stare at my bedroom wall, the sound of my kids laughing a few rooms away. With my knees to my chest, I will berate myself for trusting that bread and sleep would do the trick.

“I’m so stupid,” I’ll tell myself, “To think I’d found the formula to my Crohn’s success.”

I know, now, that I’m not the only one who does this. Guilt and self-blame take center stage in the inflammatory bowel disease community. We talk of grasping at straws–some more promising than others. We throw around words like “natural” and imply that others who need medication are somehow not trying hard enough. We go on diets and tell ourselves that we’ve discovered that one trick. We share it with others and swear that it will work for them, but it might not.

And when it falls through for us–when that one diet doesn’t work, what do we do?

We blame ourselves.

We don’t blame the fact that we have a unique disease the mechanisms behind which even the world’s top scientists don’t fully understand. Instead, we take it upon ourselves to criticize the things we can’t change, including the daily stress that comes from having to work hard to support our families. And if we can’t relax–if we fail at Yoga or meditation or fail at benefiting from therapy–we feel at fault.

I didn’t choose Crohn’s, but I can choose to give myself a much-needed emotional break. I can eliminate some foods that make me flare, but my body acts in ways I can’t predict. What works for others, won’t work for me and that’s okay.

All I can do is to try to choose peace in those painful moments, and to work hard to remove the wall that I have built.

I may have Crohn’s disease, but I will be damned if I will continue to let it have me.

19 thoughts on “Tearing Down My Wall

  1. How did you know how I am feeling exactly today??? I was just crying in pain, thinking I did something wrong, like ate a nice family meal, did the laundry and a few extra things around the house. Crohn’s disease has not rhyme or reason!!! I can feel well for a while and BOOM, running to the bathroom and curling in a ball with pain. I felt guilty taking my pain pill, but I tried for 4 hours to see if rest would help dissipate the pain to no avail. 😕. Thanks for sharing and making me see that I don’t need to feel guilty! Crohn’s disease is NOT my fault!

    • That’s how life was for my son Danny before his colostomy. Lots of diarrhea and lots of nausea and vomiting. Now that he has a colostomy I’m able to see clearly what foods and meds help him and what foods don’t. I think had I known then what I know now maybe he wouldn’t have had to had a colostomy. With meds I find that Bentyl makes a significant difference in inflammation the only thing that works better is tumeric. Dairy products especially milk adds to the inflammation so when I can afford it I buy him goats milk. The conclusions that I’ve reached is that a lot of the medications used to trest Crohns sometimes have side effects that are just as serious as Crohn s if not more serious. I think the reason doctots usually start with the steroids is because they’re addressing the inflammation but long term steroid treatment is not good for the body so this id where the problems start. If a Crohn s patient can treat the inflammation with something as effective as tumeric the msin issue Is addressed and as for as I know they’re no known side affects associated wih turmeric. Hope this helps.

  2. Pingback: Tearing Down My Wall | Crohnie Man
  3. Christina, you did it AGAIN. I think, perhaps
    All if not most IBDers can relate to the sweating in the bathroom, memorizing every piece of lint on each tile, and instead of self-soothing, having compassion, we do JUST as u say..
    My mom, til this day, cannot figure out why I didn’t tell her about my symptoms (I was still a kid, a young teen, when chronic illness came to nest.) It was shame.
    Even as a child, I was wondering what I was
    Doing to CAUSE THIS.
    I, thankfully..DEEPFULLY GRATEFULLY, do not have long bathroom “sessions” anymore.
    Am I grateful for an ileostomy? Darned right. Now, that says something about pain relief, right?
    Anyway. You always hit that “spot” of common ground, and that makes us all feel less alone, wherever, whatever..be it in the bathroom, crying in pain and guilt or anxious or sad..
    I PRAY that Humira helps you, I truly do.
    I pray that u get relief from this monster.
    You are amazing.
    It’s not your fault, Christina.
    It’s not my fault.
    It’s not our fault…..
    I hope that in the busy-ness of every day you take some time to take some time take CARE of you..
    Not with pressure and expectations,
    But because you are a person worthy to
    Be well cared for, by others…
    …and by yourself.
    With love and wishes for a HAPPY Christmas and Blessed New Year! <3 Christina

  4. Thank you for your words of wisdom. I has been thinking about the guilt that seems to go a long with chronic health disorders.
    The thoughts of if I just did this or didn’t do that I would be better.
    Or the you aren’t sick enough for….
    Just wears you down as fast as the disease its self
    So again thank you for putting into words the ways many of us feel

  5. My heart goes out to us IBDers, all the mental torture we go through which you have described so well here, Christina. As if the physical torture isn’t enough! I too try to figure out why one day I’m in severe pain, and one day I’m not. Sometimes in the middle of the night I worry that my bowel wall is just going to wear through, and then I’ll be in dire straits. Two months ago the remicade worked; why not so well now? Do I have a bad attitude? Not positive enough? I too try not to take painkillers and suffer for up to 18 hours until I can’t take it anymore, and then feel like I’ve failed because I took a pain med. And then when i’m not in pain, i’m waiting for the other shoe to drop!This is crazy thinking. We each need to treat ourselves the way we would treat a loved one-with a lot of love and compassion.

  6. I know how you feel. I struggle with the weight gain from steroids. In fact today I spent a lot of the time in the mirror hating on myself because I don’t like how I look. I spent a lot of that time thinking about the ex that dumped for a girl who looks like a younger, skinnier, and healthier version of me and I am alone. Why do we punish ourselves when every one does a good enough job of that?

  7. amazing article. hit the nail on the head for me today. I started writing an article about feeling guilt living with crohns and colitis but felt too guilty to post the contents. I’ll rethink it after reading this. Keep it up, you’re amazing.

  8. Pingback: Heart in the Wall | Eye Opening Literature
  9. OHMIGOD! This is totally true! I can’t even remember how many times I’ve come across something and thought “Aha! I’ve cured myself!” and then it totally goes to shit again. And on top of feeling guilt that I obviously did something wrong, I also feel shame and embarrassed – look at how I told everyone how much better I am? I told everyone that I’ve figured out how to prevent flare ups…and then a flare up comes and I just look like the ultimate failure with an audience to pity me.

  10. Hi Christina, I think I’m your newest follower. I stumbled on your blog after looking for information on Crohn’s and food aversions. I was afraid to comment at first, ashamed because I’m lucky enough to be experiencing real relief after a bowel resection two years ago, but I have read every single post on the verge of tears, because the fear, humiliation, and abject misery are never very far away. I may feel better now, but am constantly terrified that it’s about to return. Reading your blog is like re-living my own memories, and I just wanted to thank you for sharing your experience so honestly. Sometimes, when everything else completely sucks, it helps just a tiny bit to know that you aren’t alone.

    • Thank you so much for commenting, April! I am so happy you are experiencing relief. Never feel ashamed to share that–your story inspires me. I love to hear success stories. Keep me updated! ~ Christina

  11. Hi Everyone, lying in bed in intermittent pain-like contractions. I ate too many grapes yesterday and I have strictures. My crohn’s is not active in terms of diarrhea right now. To all you out there: have your doctors asked “what do you eat?”-none of mine have. Seems like if you are having digestive issues that should be the first question. My second fact is: none of my doctors have ever suggested an allergy test. At some point, I decided to schedule one myself; turns out I am allergic to soy, walnuts and melons. Soy is in almost everything! I love walnuts and a piece of cold watermelon is tasty in the summer. Since I have stopped eating anything with soy in it, I feel SO much better. I also have dabbled with the Specific Carbohydrate diet off and on for a couple years. My advice to everyone is get allergy tested and at least eliminate grains for a few months to see if you feel better. The SCD is overwhelming at first, but what it boils down to is healthy eating: meats, vegetables (low fiber at first and cooked) fruit (no skins at first), berries, and nuts. I am on a chicken soup with carrots easy to digest diet right now–or in a day or two when this pain goes away I will be able to eat. Yesterday, I bought some grapes called cotton candy-they were delicious. I lost track of how many I had eaten and the skins get caught up in my strictures and cause pain. I was reassuring to see that I am not alone in my pain.

    I had to chuckle at someones comment at “knowing every piece of lint on the bathroom floor”!! In years past I have been vomiting my soul out, in pain and exhausted and in a moment of delirious acuity (this only exists when on the bathroom floor sick and exhausted-it is the moment of peace between vomiting) I noticed that the baseboard was really dusty and needed cleaning!!! Seriously-didn’t I have other things to think about at the time. I like to view those moments as “moments of optimism”-knowing I will feel better and be able to clean that baseboard!

    • Hi Bobbie! I agree that food is very important. I tried the SCD, and it unfortunately didn’t help me. Grapes would kill me, too, and I know what it’s like to loose track when you’re eating something delicious like that. I hope you’re feeling better! ~ Christina

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