Crohn's Disease Forum » General IBD Discussion » Striving to be “normal”

02-13-2019, 12:17 AM   #1
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Join Date: Jul 2008
Location: California

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Striving to be “normal”

I have been in remission for several years, yet I don’t feel normal.
I am nervous about and even avoid certain foods. I know that I should be able to eat anything I want, yet I still shy away from what I perceive as “problem foods.”

I feel like a ticking time bomb. Is that just gas or is that a flare brewing? Should I eat that or is that going to send me into a flare? How long can remission last?

Where is the nearest bathroom, what kind of toilet paper does it have?

Will I ever have a normal relationship with food?

Even in remission my gut makes A LOT of noise after eating. Did anyone hear that? Is it weird?

With this disease I also acquired anxiety. I worry about what to eat, what not to eat. I worry about the next flare, about the next colonoscopy. I’m young but I truly worry about my own mortality. I know the disease isn’t necessarily deadly, but I worry about my health in I eating right? How do you eat right when most healthy foods cause pain??? I also have How do you eat high fiber with this disease?

Most people would probably just enjoy life, but I worry....I worry about everything. What can I do better for my health? Should I just enjoy what I can now because I will inevitably have another flare?

Damn this disease for always being in the back of my mind.
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.

"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
02-13-2019, 06:44 PM   #2
Join Date: Jan 2019
Location: Toronto, Ontario

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Hi Teeny5 - sorry you are feeling this way. I don't think you are in the minority with these feelings. I am a mother of a son with crohn's and even when he is feeling well, I'm always worried it won't last, or is this food good for him to eat - will it cause him to flare? Will his medication need to be changed, is he not hungry because he is getting sick again, etc., etc., etc.

I can only say that we have to live one day at a time and enjoy today. If we think about tomorrow, we will never enjoy it today. I hope others can offer you some of their personal experiences. I'm sure you are not alone!
Mom of L (20)
Diagnosed at 19 with osteoarthritis both hips (June 2018)
Diagnosed at 19 with crohn's (July 2018) - likely had it throughout teens asympomatically -
MRI scan Sept 2018 showed Si joint with slight erosion - AS

Entocort August 2018 to January 2018
Remicade end Sept 2018 to present
Frequency every 4 weeks at regular dosage
02-14-2019, 05:40 AM   #3
Join Date: Oct 2018
Location: Baltimore, Maryland

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It's really trial and error when it comes to food. I avoid things like processed meats, deli meats, etc., as I've learned they can be problematic. I also limit intake of red meat to once per month and fresh vegetables to maybe once or twice a month because they cause issues for me as well.

You always have that nagging "what if..." feeling in the back of your mind. The trick is to not let it consume you or control you. Try to be mindful of what you are eating and aware of your surroundings (it's now second nature for me to note where bathrooms are as soon as I enter a new place, much like it's second nature for some people to look around where fire exits are just in case). If I see a sign that says "no public restroom", I don't bother giving that place my business if it's a restaurant.

I know it can be hard, but try to re-channel the worry and anxiety into something else like hobbies or family time.

Crohn's Disease Forum » General IBD Discussion » Striving to be “normal”
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