crohns day

My name is Teresa and I am 23 yrs old. I have been battling (relatively unsuccessfully) Crohns for the past 5 yrs. There are a lot of other smaller issues, but they’re not so interesting.

Last fall I had surgery #3 and a temporary colostomy and a diversion were placed. My doctors are in the middle of debating further surgery to remove my gallbladder and the rest of my colon.

Every day is a new new challenge. I am so grateful that I am not in the hospital right now and I’m trying to keep my life as relatively normal as possible.

I am not ashamed of my disease or my ostomy, but I still hide it as much as possible. #NoShameDay is such a beautiful idea! We all have things we hide from the world, but our broken bodies shouldn’t be one of them. We are warriors and our scars should be worn with honor, not dismay.

Also, gotta have another rant.

Last week, I saw an Instagram story that made me pretty mad.

This particular person is vegan. Fine. I admire vegans for their dedication, and think it can be an extremely healthy way to live (if eating a balanced vegan diet, of course).

The thing is, it’s not healthy for everyone. Particularly, some people with IBD who can’t tolerate a vegan diet.

This is not to mention the whole concept of choice. Some people choose to be omnivorous, or vegetarian, or vegan, or fruitarian, because that diet is better for them, and there should be no shaming of anyone for the diet they choose to follow. Unless that diet involves cannibalism. That is not ok (obviously).

Anyway, back to this post. The poster was telling people to go vegan, and watch a new documentary about veganism and health on Netflix. Fine.

The next part of the Instagram story featured the following: “A plant based diet can help/treat the following: diabetes, heart disease, Multiple Sclerosis, Prostate Cancer, arthritis, Chronic Fatigue, and Crohn’s/UC.”

Ok. Ignoring all the other conditions listed (because I’m not a patient and can’t speak from experience, but seriously?), for Crohn’s, just no.

There is no diet that treats or cures Crohn’s, and the ignorance around food and this disease drives me nuts.

We do not know the cause of Crohn’s Disease. Do environmental factors play a role? Very probably. Is there also a genetic component? Yep. Can you modify diet to try and soothe an inflamed digestive tract? Yes. Is there any evidence that dietary change will cure the disease? No.

It 👏🏻 is 👏🏻 autoimmune 👏🏻 and 👏🏻 there 👏🏻 is 👏🏻 no 👏🏻 cure👏🏻

Stop 👏🏻 shaming 👏🏻 IBD patients 👏🏻 for 👏🏻 our 👏🏻 disease👏🏻

For so many Crohn’s sufferers, major components of a vegan diet are just not possible. When I’m sick (and frequently when I’m not even flaring), I can’t tolerate fibre. No leafy greens, vegetables of any kind have to be cooked to mush (and even then, cause pain), nothing with any kind of skin or rind, no nuts, no beans/legumes or pulses. Even whole grains are a no go.

I can basically eat bananas, potatoes, rice, plain chicken, white bread, dairy (I know, I’m weird), and high fat/sugar things like pudding or jello.

For others with Crohn’s, veganism is achievable, and that is truly amazing. The fact is that it’s not for everyone, and I find it highly offensive to suggest that just by going “plant based” and “loving animals enough to not eat them/their products,” that someone who is currently pooping blood 20 times a day no matter what they eat, or someone on TPN, can just heal themselves.

This whole concept of “if you would just do this simple thing, you can help yourself,” is obnoxious, ignorant, and offensive. Especially when it’s prescribed for everyone regardless or circumstance.

It suggests that our GIs don’t know what they’re doing by prescribing the best possible medical/surgical treatment options for us.

It also suggests that we are to blame for being ill.

That is not friendly or loving. Let’s just stop policing the food choices of others, and call it a day.

I wasn’t gonna post this at first (because even though I’ve been diagnosed since I was six I’m still not really comfortable talking about it) but I just want to let all my black people with Crohns Disease know that you matter and are represented in this movement. So with this selfie of me getting my Remicade infusion, I’m repping for us… #blackout

Remember: Wear purple for World IBD Day, tag me in the post of photos, and you will be included in my blog post for IBD Day! 💜

#PurpleforIBD Today is World IBD Day.

As most of you know I was diagnosed with Crohns when I was 9 years old and I would not be the person I am without my illness. That being said, this same illness wrecks the lives of hundreds of thousands of people between harsh medication, surgeries, medical bills, feelings of isolation, and of course the actual symptoms of the illness. But it can also bring people closer together, make friendships, and start a change. I am Grace, I’m 18 (almost 19, I have an ileostomy, and I have Crohn’s disease. The disease may be invisible but I am not and I’m here to raise awareness. You can too by wearing purple for World IBD Day!

I need IBD Awareness Day because:

  • When I was younger, people wouldn’t come near me because they didn’t want to catch it.
  • Teachers accused me of faking sick just to get out of class because I didn’t look sick.
  • Even after spending 2 months in hospital for a major surgery, my boss told my coworkers I was faking it for attention and that my family was just “babying me”.
  • My “friend” told me I would never go anywhere in life.
  • Family members still tell me I “just need to try harder.”
  • I’ve been told to “stop whining, so many people have it worse.”

I need IBD Awareness because even after having this illness for 10 years, people still don’t understand.

10

What does blackout mean to me?

My name is Twila Amoure and about 3 years ago I was diagnosed with an autoimmune disease and to say things have always been easy since then would be a bold lie. I missed what would have been my senior year of college because I was in the hospital for majority of that school year.  While in the hospital I lost a lot of weight and strength. On top of all that the medicine that I’m on (remicade) has caused my hair to fall out. 

The first black out was around the time I had just gotten discharged from the hospital and I posted a selfie. Back then I was really struggling with how my body looked and honestly I didn’t feel beautiful. But you guys showed me soooooooooooo much love!!!!! seriously!!! not only did Ya’ll show my selfie love but some of you even sent me encouraging words in my ask box. 

So here I am again, giving an update lols. As you can see I’m doing so much better! My hair is growing back, I’m no longer using a walker, and I’m much happier. I even started a youtube channel since then   https://www.youtube.com/channel/UCd3p37ARyRybA7uG4wLdwtg 

(please check it out and subscribe) 


Blackout to me means love and support. Because that’s what ya’ll gave me, love and that’s what ya’ll showed me, support. 

much love from me to all my black brothers and sisters :) 

When I have a bad day (mentally, not physically), wine or chocolate or any other classic “go-to” comforts won’t do. For me, it’s cheezies.

In this case, it was a cheezie buffet. My lovely husband shopped 3 different stores to prepare for me the ultimate dish in eating away your troubles: Cheezies Done 3 Ways. Shown here are Cheetos puffs, Cheese Pleasers and Hawkins Cheezies (the latter two of which I’m certain you can only get in Canada. Condolences to those in other countries. You don’t know what you’re missing).

Was it good for my high blood pressure? No.

Was good for my Crohn’s? No.

Was it good? Yeah it was.

Having a chronic illness is life-altering, but not life-ending.

We may not die from it, we may continue to live long lives, but they will be vastly changed from anything we ever imagined for ourselves.

We can still have lives though. A diagnosis doesn’t mean your life is over, it simply means your new normal is just beginning. :) Don’t ever give up.