About Ulcerative Colitis · Personal

I went to a support group & it was great

So this week was Crohns and Colitis Awareness Week! If you follow me on Instagram, then you probably have seen my posts about it! But I hope you have had the chance to share your stories or at least read and be inspired by other peoples stories! I know I have certainly been inspired.

But to update:

  1. I have finished my first class for my masters. IT FEELS SO LIBERATING. I can now nap guilt free
  2. I have started up with Entyvio monthly, so lets keep our fingers crossed that this is the key
  3. I’m actually doing festive things!
  4. We are now down to 6 pills (30mg) of prednisone, but I still look like a little chipmunk. My face is literally twice the size of my boyfriends.
  5. My body and I have reached this slow understanding where we can now start differentiating between what is going to be a fart and what is going to be a bowel movement. I say slow, because my body still likes to surprise me every once in awhile, LIKE TODAY. When I thought I would catch up on my Christmas shopping, but my body was like “nope girl, we need to run to the other side of the mall to use the washroom first. You got to work if you want to enjoy life.” Some of you might think this is a ridiculous milestone, but this is monumental. There is nothing more terrifying than not being able to trust our own farts, especially when you are always gasy! You clench your cheeks, sprint to the washroom, and pray you make it only to find out it was a fart.
  6. I went to a support group for the first time.
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Being festive with those chubby cheeks. I try to take photos to remind myself that I still live and enjoy life. It helps when I’m bed ridden and wallow that I don’t live life. 
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Entyvio infusion #4

This was a big deal because I had been so apprehensive. I wasn’t sure what to expect and felt like maybe joining one would make it all much more real and make me more depressed. That or I was scared it was going to be some weird kumbiya moment, where it felt falsely too positive and “you can do this, you are strong” cheerleader-esque. I would rather stab my eye with a fork than deal with people who are too positive about IBD. It’s still poop at the end of the day and it still sucks it’s what we are going to be dealing with for the rest of our lives. Let’s not sugar coat things.

But I was wrong.

It was actually empowering. I was surrounded by inspiring people who just got it. I didn’t have to explain everything in as much details because in one way or another they have been there. More than that, they’ve been there and have gotten through it. I talked about colonoscopy preps and everyone just immediately knew what I meant about how horrible it was. Because they’ve been there! More than once! We all knew the painful process of chugging the solution and the volcano the just erupts within you.

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It was great. It was great to just be able to openly talk about things and genuinely feel understood. To know other people, even if their stories were different than my own, have experienced a lot of the same things I had. We had all been on that emotional roller coaster. And sometimes still are. I also learnt a lot too!

It was also a sobering moment. A reminder that I am not at the worst it could be, but it didn’t make my story feel any less important.

If you have the opportunity to join a support group, I would highly recommend it. I am excited to continue to attend them and see how this perhaps can even help my own journey further. I’m hoping to maybe even look into getting more involved in the community and help raise awareness. It effects so many people in such unique ways and it makes me sad that it’s still something that not a lot of people feel comfortable talking about.

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This is about you! It impacts your life in ways you can’t even imagine! You have the right to have a voice, even if you don’t look sick!

You deserve to be visible.

It’s as simple as that.

But with that I am off to bed. I am exhausted. Between finishing school, work coming to an end of a session, the holiday season itself, and my body still trying to figure out if we want to get better or just toy with my emotions, I am exhausted.

And I have a busy weekend ahead of myself. I should maybe consider doing some TLC and taking a night just for myself and my bed.

Soon. Soon.

Goodnight!

Bee.

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