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

02-13-2019, 12:17 AM   #1
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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
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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 moderate to severe crohn's (July 2018) - likely had it since early teens asympomatically -

Enteropathic arthritis - diagnosed June 2018 - showed symptoms mid teens.

Entocort August 2018 to January 2018
Remicade - Sept 2018 to May 2019 -5 mg/kg every 4 weeks

May 2019 to present 10 mg/kg every 4 weeks
02-14-2019, 05:40 AM   #3
Join Date: Oct 2018
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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.
02-18-2019, 11:40 PM   #4
Lady Organic
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Hi there, how about talking to a psychologist about dealing with anxiety related to a chronic illness? would that be possible for you?
If not, other alternatives such a meditation, sports, social activities, anything to put your mind thinking about something else and bring down the anxious thoughts. Sports is pretty good. It releases feelgood hormones in the body wich bring down the anxiety level. Sports also helps in the maintain of remission in IBD, according to reseach. My GI has often mentionned sports to me.
You are in remission and that is the really good thing to celebrate! Try to bring your focus to this. remission can last really long time, even decades, each patient is different. Hoping you have a long one
''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: Humira
Diet: ''IBD-AID'' : organic food only, Vitamin D + B12 shots
Past meds: prednisone 50mg, 5-ASA (pill, rectal), cortifoam, cortenema, Imuran, Purinethol, methotrexate.
02-19-2019, 09:53 AM   #5
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remission doesn't mean you can eat anything you want. Have you ever kept a food diary? It will pinpoint foods that cause you problems, and then you can eliminate those. Substitute something else that you like. Our bowels have been altered, I now have scar tissue, so I'm probably not getting as much nutrition as I used to. It's good that you are concerned about your health, but the anxiety is not good for you. Lady Organic gave you some good advice. I find that long walks, hot baths, listening to music etc. also helps. Congrats on your remission!
02-19-2019, 11:41 AM   #6
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· Stoma
Make a list of known foods that are safe. You could try experimenting with small amounts of new foods and keep diary of what works and what does not.
Its worth trying to eat smaller portions and have 4 meals instead the standard three. Doing this reduces the load on your system making it easier to digest.

Also work on your stressors, as mentioned getting out and doing light exercise such as walking, cross country skiing, and hobbies like photography or gardening help reduce stress. I heat my home with wood, and believe me it is therapy for me to cut up firewood, splitting and piling it. It provides me with a sense of accomplishment, self sufficiency and saving me a lot of money on heating oil.
There are many things we cannot control and worry about, but really why worry about the things we have no control over? Instead take that energy and use it for something positive be it activities or whatever. Life is big and wide, and despite living with health issues it can still be a great ride.

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