The Ramifications of a Crohn’s flare-up

I just discovered on Wednesday, after seeing my Gastrointestinal doc, that my Crohn’s disease is flaring.

I’ve been very fortunate that it has been in remission for 25 years-which is highly unusual for people with IBD(Inflammatory Bowel Disease).

I’ve been telling friends, including my boyfriend about this, and they don’t understand the ramifications.

From the time I was 10, when I first got Crohn’s disease, to the age of 21, when I had abdominal surgery, I suffered a lot.

I’m feeling pretty lonely in Ashland, Oregon, with this new information, as no one here knew me, and how horrific the disease was for me, during my early 10 years of living with it.

When Crohn’s disease flares, it can(and often does) get totally out of control, like a wildfire, or a drunk Harley Davidson driver.

It’s an autoimmune disease, which means that your body’s cells begin attacking your own cells, seeing them mistakenly as foreign invaders. At least this is how I understand it.

Unfortunately, for a number of reasons that I don’t comprehend, researchers seem to be only slightly closer to understanding the cause of the disease, then they were 25 years ago.

One would imagine that a special diet could be helpful to people like myself, but reams of studies have proven otherwise. I’m sure if I just lived on fast-food, it would make me feel worse, but things like fresh kale and broccoli, can also make it worse.

When I was young, the docs often put me on clear liquid diets. Jello, juices, broth-that kind of thing. It was ostensibly to rest the gut, as it was all inflamed and infected. I never followed the diet for long for obvious reasons…

For the past 25 years I’ve been off of all medications for Crohn’s disease, which is truly amazing. My GI doc is putting me on a powerful steroidal drug called Budesonide, to hopefully stop the disease in it’s tracks.

I know that because something happened in the past a certain way, it doesn’t mean that it will happen that way in the future. But I’m scared, and just feel like sleeping, these days.

I’m doing my best not to get depressed, but have not been terribly successful.

I don’t mean to sound negative here; just to speak my truth.

It is unlikely that the drug I will be taking for 2 months will stop the disease completely, which could mean other medications that I’ll need to take chronically, as well as symptoms like nausea, diarrhea, and weight loss. Thankfully I’m 20 pounds overweight, which gives me some wiggle room!

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Still doing some painting. But my tiredness is making it hard to concentrate, or to work on more complex paintings.
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5 Comments

  1. I’m so sorry it’s flaring, and after 25 years too… no thoughts on what’s triggered it, or do you think it’s just random? I didn’t have Crohn’s but I had various problems that led me to where I am today with no bowel and a stoma, so I can empathise with how isolating it can be dealing with digestive problems that nobody understands, the isolation, the lack of anything that can really help (I actually found healthy foods made things worse). I do hope the Budesonide helps, even if just to ease as much of it as possible. It’s hard not to think of the worst case scenario and needing other meds and all the side-effects that can come from them, but I’ll try to stay positive for you. You’re not alone… your blog is your safe space so talk as much as you want, it can be hard to be honest (and show how negative and depressed you feel) to those close to you sometimes, especially when they don’t ‘get it’. Sending lots of hugs your way  ♥
    Caz xxxx

    1. Thank you so much Caz for your support, kindness, and understanding. Ever since I returned from Mexico 8 months ago, I’ve been dealing with intestinal issues. I’m taking my landlord to small claims court, moved in with my boyfriend(who doesn’t understand and is a curmudgeon), and have been dealing with other stressful stuff.

      This flare isn’t as bad as what I’ve dealt with in the past-so I do feel somewhat hopeful.

      I hope that you are healing well, and in far less pain.
      xxx Wendy

      1. The extra stress won’t help, but that’s just telling you what you already know. It’s easier said than done to reduce stress when it’s the situation & often things out of our control that’s causing it. I’m always here if ever you want to chat, Wendy. Please do try to rest up this weekend and hang in there xxxxx

  2. How are you feeling in May? You came to mind, and I wanted to check in with you. As a childhood friend, I remember when you suffered from Crohn’s, way back when. Please drop me a line, when you have a chance. Would love to connect with you again. Or, I will text and reach out that way. Thinking of you, Wendy.❤

    1. Hi Kim. I sent you a text to the phone number I have for you. Not sure if you got it. Thanks for your kind and thoughtful comment on my blog. I’m still doing about the same. Have lost around 20 plus pounds since I got sick-luckily I had extra weight to lose! Going on a drug called Humira, soon. Mark probably knows about it.

      How are you and your family?

      I was recently in the Bay Area. Mostly to get a second opinion from my old GI doc there. He agreed with my doc here in Ashland, which gave me more confidence.

      Looking forward to hearing about your life.❤️

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