Dealing with Crohn's

By csksmjhp

2 min read

I was diagnosed almost 2 years ago with having Crohn's disease. This was after a flare up that left me pretty much bedridden for 3 weeks. After my diagnosis and further research of Crohn's, I was angry with my previous doctors. I had been misdiagnosed as a teenager with having endometriosis, which yes that was confirmed. Yet almost half my time in the ER during that time was due to intestinal issues, according to tests. During a 6 month flare up as an early adult, after my daughter was born, I was diagnosed with having an overactive thyroid. My regular doctor kept telling me I had the flu, or another strain of the flu. I even asked him, "How? I haven't been around many people. None of them have been sick. Are you sure? This is April/May?" The overactive thyroid diagnosis came from my OBYGN 7 weeks into my 6 month flare up.

My new "diet"

Occasionally here and there, I would be down for a couple days. I'd say about once a month or so from then until my Crohn's diagnosis at 29. I started on the diet the doctors suggested to help prevent flares. My list of "cannot have" and "must avoid" keeps growing, while my "okay to have" list shrinks. Our community we live in is blind to this issue of Crohn's and how it affects people who have it. Most food contains black pepper. Pepper, seeds, and nuts are on the top of my cannot haves. High fructose corn syrup, coffee, or carbonation are next. Then comes most veggies including leafy greens. Along with gluten or dairy. I've shortened this list to mainly ingredients versus actual food like pizza, spaghetti, tacos, burgers, donuts, etc. It's challenging in the store, trying to find something I can have because most everything has at least 1 or more of the above ingredients. Take chips/pretzels. I can have plain potato chips, but pretzels are out unless there is dairy/gluten free. I don't have any options for crackers at the moment because they either contain gluten, high fructose corn syrup, or seeds. Going out to eat, I have to keep it pretty basic, like eggs, ham, potatoes, and bacon. Also emphasizing no pepper. Just simple things a consumer would like, but have little option or choice.

Seasonal changes also affect me

Not only does my diet restrict me, so do the seasons. Because of my Crohn's, I dehydrate faster than "normal." The warmer and hot periods really take a toll on me. Trying to remember how much water I've had or need to have. I try to concentrate on proteins and liquids versus fillers during these months. My family doesn't always understand and sometimes say "it's embarrassing," if we have friends over or are out eating and I get sick. I'm not the medication type of person. Starting on 1 then ending up with a handful trying to curb the side effects. My flare ups are diminishing due to my diet restrictions. Occasional diarrhea here and there. With little to no vomiting. I'm 31 years old with 3 children and a husband. My life has done a complete turn around. It's not easy out there trying to shop or dine, but I'm alive and currently in control.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.

SusanHU Community Admin
Thank you so much for sharing your story <inline-mention user-id="2235755" username="csksmjhp"/> - we really appreciate it! Even though it's been difficult, it does seem like you're doing a great job of figuring out what works (and what doesn't!) for you. Please keep us posted on your journey - we're here for you. - Susan (InflammatoryBowelDisease.net team member)
cent0rea88 Member
I know how you feel. I'm 17 and have been recently diagnosed after being bedridden for 2 weeks. I have limited my diet to basically salad, fish, chicken, eggs, apples, and carrots. I have gone 5 weeks without sugary drinks, caffeine, grains, potatoes, corn, junk food, or candy but my symptoms are practically non-existent. Good luck friend.
cent0rea88 Member
Also, I would like to point out that potatoes and gluten-free substitutes will usually make your symptoms worse because they are starches that can damage a weak small intestine. When I want bread or something similar, I make pancakes out of dried coconut flour, eggs, coconut milk, and applesause. You can also substitute dried apple chips for potato chips.
cent0rea88 Member
I would highly recomend taking medicine if limiting your diet alone isn't helping becasue sometimes certain cases are too severe to be treated by diet alone. You have to eat something otherwise you'll become malnourished.
csksmjhp Member
I'm against most medication due to previous history. The majority of my current diet consists of scrambled eggs and ham, tuna fish and hard boiled eggs, fish, vanilla muscle milk protein shakes, "real" cranberry juice, no pulp orange juice not from concentrate, lots of water, Bai Coconut Infusion, and green tea with ginger. About once a week or every other week I might have some bacon, potatoes, rice, pork, or beef. I only have used gluten free flour when making pies, pizza, or pasta; all of which are extreme rarities for me. My sauces and fillings have to all be done from scratch as most companies add pepper, cloves, basil, parsley, another seed, or leafy spice to theirs. Most prepared gluten free substitutes contain dairy, seeds, or nuts. The worst part for me is being bedridden due to the vomiting, diarrhea, or exhaustion. Staying away from what I know I definitely cannot have, focusing on how my body reacts differently to different foods, and eliminating going out to eat...I have been doing fairly well as to the vomiting and diarrhea part almost being eliminated. As to the exhaustion portion...I have no issues falling asleep at night unless my family is being loud and disruptive.