Living With Crohn’s For More Than 15 Years & Not Even Knowing It – Signs & Symptoms of Crohn’s Disease

I had actually written pretty much this exact post elsewhere last summer but I wanted to share about my health journey here as well so here’s part one.

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About a year and a half ago I was diagnosed with Crohn’s disease, completely out of the blue. Okay, so it wasn’t totally out of the blue but I sure didn’t see it coming.

Now that I’ve had over a year to come to terms with the diagnosis and think about it I’ve realized I’ve been having symptoms for more than fifteen years. Probably for more than half of my life.

Today I want to share my story, not in an effort to say “hey, look at me!” but for the same reason I’ve always blogged; in the chance that my journey can help someone else out there.

This post will be a very open and honest and probably TMI for some people. I hesitate to write about it cause it’s kind of embarrassing but Crohn’s is an irritable bowel disease so we can’t really talk about it without talking about all kinds of fun stuff revolving around bowel movements. So, cue all the memes to make things hopefully a little less uncomfortable. ?

Common symptoms of active Crohn’s include:

• diarrhea
• fever and fatigue
• abdominal pain and cramping
• blood in stool
• mouth sores
• reduced appetite and weight loss

From what I can figure out I probably started having symptoms back when I was thirteen or fourteen years old, or at least, that’s when I remember having the symptoms, I don’t remember if I had them prior to that, there is definitely a possibility.

The biggest problem that kept me from ever getting diagnosed was well, two things:

• the embarrassment, my biggest symptom has always been blood in my stool but it wasn’t really something I wanted to talk to anyone about, what teenager does?!
• the fact that there are flare-ups – I’d experience symptoms for awhile and then they would go away before I got worried enough to tell anyone about it. Then the flare ups just kept coming back but eventually it just became normal for me and I’d try to forget about it until it went away.

Two years ago I went to my doctor for what I thought were two unrelated problems: hemorrhoids and lactose intolerance. I thought it was hemorrhoids anyway, I’m actually not even sure if it ever was, but they didn’t fully go away so my doctor referred me to a specialist – a gastroenterologist. I had a brief meeting with him . . . and let’s just say he isn’t the most talkative doctor out there. After asking me a few questions he decided to book me in for a colonoscopy in the fall. At this point I assumed the colonoscopy was to fix the hemorrhoids that weren’t going away.

The day of the colonoscopy arrived, I’d done all the prep work (not super happy fun times but not nearly as bad as I was expecting, though that drink is something vile!), and they put me under for the colonoscopy, but they mentioned I wouldn’t be completely out, I may nap a little and wake up in between. Which is exactly what I did, I woke up briefly during the colonoscopy, I was facing the machine that showed the scope image and I remember thinking “wow, that looks really red”, and vaguely hearing the doctor speak in the background and then I fell back asleep.

When I came to after the colonoscopy the doctor came over and without any sugar coating told me he thought I had Crohn’s and had taken a few biopsy’s to be sure. Then they did some blood work, gave me two prescriptions and I was told I’d have an appointment with him in a few months after the biopsy came back.

I remember just sitting on the hospital bed shocked. This was not what I was expecting!

I filled the two prescriptions and started taking them. One was a steroid to help calm things down in my intestines, I was on that one for awhile that had some positive and negative side effects. One good side effect was that I only needed like three hours of sleep each day and never felt tired! Then it had some weird side effects like making me feel like I was floating two inches above my body for most of the day and making me feel really puffy and swollen.  Exhibit A:

The other medication, is to help prevent flare ups and I am still on it. It definitely seems to be helping and appears to have zero side effects.

A few months after my colonoscopy I met with the specialist again and he confirmed the Crohn’s diagnoses. He also mentioned my liver levels were super high, that will be another post for another day though . . .

In the last year and a half I’ve really learned that dairy is a huge trigger for flare ups for me. It is different for everyone but that seems to be my big thing. At first I thought if I just eased way up on the dairy it would help, and it did, but since I’ve gone completely off of it every time I try to eat some I realize how bad it makes me feel. The other day I had two pieces of pizza and that started hurting me within half an hour. For me I feel a lot of pressure in my stomach and like someone is taking a small paring knife and stabbing it into random parts of my abdomen. Not very pleasant.

Because I’ve been watching what I eat I’ve realized how good I can feel and how much pain I was living in every day before my diagnosis and going off of dairy. Since Jared was diagnosed with celiac a few years before I’ve really learned a lot of about reading food labels and cook almost everything from scratch so it has made the transition a lot easier than it would have been a few years earlier.

Not that finding food to eat is always fun or easy; I grew up on cheese and crackers and all things dairy and gluten and now that’s gone. But it’s surprisingly not as bad as I would have imagined, and, oddly, cashew cheese is actually good. So is gluten free pizza without cheese. I hardly know who I am anymore!

While I’m not a vegan, my favorite cookbooks are vegan cookbooks because they’ve figured out that there is life after cheese and it can taste good!

Okay, so, this was definitely a rambly post filled with memes, a little different that the norm but I wanted to share my journey because I’m hoping to share a variety of dairy free (and gluten free) recipes in the next while and now there is a little background as to why.

I’ll probably do a follow up post about this last summer of testing to figure out which liver disease I have and another one about gluten and dairy intolerance in children. Our family has been plagued by food intolerances in the last few years but thankfully there is overlap!

Do you have a health journey or problems with food intolerances?
Any tips for dairy free eating?