disease

FAQ: Crohn’s Disease

You haven’t asked, but I’m answering anyways 🙂

Crohn’s is an inflammatory bowel disease which causes inflammation in the gut, intestines and digestive tract. Mostly affecting the small intestine and colon. But, it can affect anywhere from rectum to mouth.

What causes Crohn’s? Well, it’s unknown truly what causes one to have Crohn’s disease. But many believe that it’s caused by a combination of the environment, an overreaction of the immune system, or genetic. The true known cause is a mystery, and sometimes it seems it could just be the luck of the draw.

Crohn’s can lead to symptoms like abdominal pain, diarrhea, fatigue, dehydration, and malnutrition. Some people, like in my case, experience the severe and more ‘rare’ complications, like abscesses, fistulas, perforations, bowel obstructions/blockages, and frequent infections.

Crohn’s is an autoimmune condition, meaning that a person with Crohn’s immune system mistakenly attacks healthy tissue causes inflammation. Basically, the immune system has been rewired to believe that its own body is a foreign invader, and it spends its time tirelessly fighting itself.

How is Crohn’s diagnosed? There are several ways to be diagnosed with Crohn’s.

  • Colonoscopies
  • Stool Cultures
  • Blood Tests
  • Upper Endoscopy
  • Biopsies
  • CT Scan/MRI
  • Capsule Endoscopy
  • Upper/Lower GI Series

Some Facts

Now, the real question everyone is wondering, is there a cure?

No, there is no cure for Crohn’s disease. There are only ways to try and achieve remission or alleviate the symptoms. Infusion therapy, biologics, steroids (which cannot be long term as those can cause serious irreparable damage to the body), Medications (like opioids and temporary painkillers). There are surgical procedures done to many as well, including fistula repairs, and the obvious most well known – ostomies (ileostomy or permanent colostomies where the colon is removed). Self care alone can cause some positive change, but is often times not ever enough. As a Crohn’s patient we sadly are often reliant on many drugs as it can often be our only way to function.

As a woman who has had Crohn’s for nearly seven years now, it can be quite frustrating not knowing how or why I developed this disease at just nineteen years old. And it’s even more frustrating when it can seem like there is no end in sight for thronging complications and symptoms. Crohn’s is a spectrum, so while some have mild to moderate disease, and some achieve remission rather quickly, I like many others, have a severe complex and rare case which comes with several hospitalizations and Er visits a year, 20 surgeries thus far, and long term opioid dependency just to be able to experience a pain scale level of 6 on good days. But now, with an Ostomy, we can hopefully begin to see some positive change in the perianal Crohn’s (my fistulas and recurring abscesses) which has so often caused me to have no quality of life.

Patients like myself devote most of our lives dedicated to trying to understand our own bodies, what we can and can’t eat, what limits we have with physical activities, and just figuring out ways to get through each and every day. Advocating for research, preaching awareness, and sometimes screaming from the roof tops for just anyone to listen to us and believe us. This disease can make you feel gaslit, crazy and like it’s all in your head. Finding good, empathetic and validating doctors can also be a major challenge, but once you do, it’s like a weight is lifted off of you, and you can take the load of advocating for yourself off, as your GI should be the one doing it for you.

So as always, if you or anyone you know suffer through this terrible illness, please remember you are not alone. And remind yourself that you are allowed to mourn the part of you that died with your diagnosis. No one expects constant positivity and you are allowed as many bad days as you need to properly heal. Just don’t ever give up. I know it feels as though it’s all you can do, but believe me, there is more to you and your life than Crohn’s. It may have stolen so much from you, but you are in the position to take it all back.

Resting Moon Face

Yes, It’s a thing.

I’ve probably talked about my moon face to every one of my friends and none of them really knew what I was talking about until I explained it.

Prednisone is a steroid that of which will help with the pain and inflammation temporarily while a different treatment plan is underway, usually.

Well, I’ve been on Prednisone since late November, and let me tell you, it’s nice to have some help with the inflammation in my gut, but the constant eating, and changes in my body are driving me nuts.

For starters, I’ve been getting these bumps on my forehead and my shoulders. They aren’t even pimples, just little annoying bumps. Also, I’m almost always hungry, and everything tastes good. I can’t think of a single food I wont eat. And lastly, moon face. While, I haven’t experienced much weight gain except maybe a few pounds, my face has turned into a literal circle. I see myself and think ‘Human or hamster?’ because I look like a little rodent that kids keep as pets whenever I smile. It’s kind of insane and I absolutely hate it. I have an ileostomy bag at the moment, and I’m more insecure and concerned for the roundness of my face and my puffed out cheeks, rather than the bag full of poop on my stomach.

Now, you may think I’m overreacting, but people have actually noticed this change. So figured I’d provide some photos from when I was first diagnosed with Crohn’s in August of 2018 to just a few days ago in January of 2019, for reference.

Now, it may not look like a lot, because it really is just my face that’s gaining the weight, but I mean, COME ON, I totally look like a little hamster or something. And it’s fine, because I know once I’m off Prednisone in a few weeks, it’ll go back to normal, but wowza, gotta love modern day medicine and the lovely side effects!

So when you hear someone refer to moon face, this is what they mean. Medicine can have lots of negative side effects, and it sucks when the thing that’s helping your pain is also the thing making you look a way you don’t necessarily like. It’s hard to be positive or feel good about yourself when you can literally see this change happening right in front of you. There are days I just feel so insecure, whether it’s because of moon face, or the little bumps on my forehead, or the bag, I just miss the confidence I used to have and I’m trying so hard to get it back, but it’s hard when medicine is contradicting you. I just remind myself that moments are temporary. I can and I will get my groove back, I just need to keep patience in mind. Nothing happens overnight and right now my health is the main concern.

But damn, I am SO ready to start feeling AND looking good at the same time. So let’s hope when I get my reversal surgery in March, I will be.

Also, remember, if you have a bag, or moon face, or just anything you feel insecure about, try not to stress too much over the little things. We all are trying our hardest and I know sometimes things like this can be very discouraging and frustrating, but honestly, we all are beautiful no matter what. We all have things about ourselves that we consider flaws, but try to focus on it as a unique part of you. It’s what makes you, you. And we need to learn to just embrace ourselves and love every part of ourselves, because that’s the key to being not only happy, but healthy.

So ladies and gents, embrace that moon face, because it’s the only face you got and there’s no point in dwelling on it!