I was diagnosed with Crohn’s disease last week. I’m not sure why I feel the need to share this with you, or my blog, but here I am. Finally, I have a name for something that’s been affecting my life every single day.
When you’re already living with chronic pain, having another issue on top of it just makes everything even more difficult.
I wasn’t sure if the issues I was having were due to Fibromyalgia or PTSD or anxiety… I know all of those issues do manifest themselves in real, physical ways. But, I went to see my doctor when those problems didn’t go away on their own. I was in a lot of pain by the time I went in.
I started Prednisone two days ago. Prednisone lowers the activity of the immune system, which is your body’s defense system. Corticosteroids work by slowing your body’s response to disease or injury. Prednisone can help lower certain immune-related symptoms, including inflammation and swelling.
On top of that, I have bronchitis (plus, ya know, fibromyalgia + PTSD + anxiety + severe depression). Ugh, I don’t even like typing all that out. It’s just a lot to battle. I’m strong, but I’ve been feeling down a lot.
The diagnosis does explain a lot of my symptoms, and I wonder how many are actually from Crohn’s, not Fibromyalgia. But, at the end of the day, does it really matter what they’re called? It’s been making me miserable, and that’s what matters.
Crohn’s does have more treatment options and I’m hopeful that I can get over this flare, and maybe I’ll start to feel like a better version of myself again. The disease they found in my intestines was still in its early stages, so hopefully we caught it soon enough to be managed with a round of Prednisone.
I’m still full of a lot of questions.
Since I don’t want this post to be all downer, I want to share parts of my life with you that isn’t all bad.
One of the hardest lessons I’ve learned while battling mental/physical illness: let myself have a good days, because they put the bad days in perspective.
Instead of taking it easy this weekend, Gus (my husband), Max (our pug), and I wanted to take a road trip to spend some quality time together, take a break from work, and get my mind off my health. We drove out to the Washington coast so we could see the waves and put our feet in the sand.
I wanted to feel the earth under my feet and ground myself. Plus, I love road trips; singing along to my favorite songs, eating snacks, and enjoying the passing scenery. Max also loves road trips, and I love any excuse to drive my new Subaru. We had hoped to stay the night at the Adrift Hotel on Long Beach (our favorite), but they were booked for the night. Let’s finish on a high note: Max and I, me SMILING WITH MY TEETH (a rare sight on the internet), and Max enjoying the view.
If you have Crohn’s disease, I’d love some advice on how you manage it. What diet changes have you made, if any? How do you know when you’re having a flare? What should I tell my husband about Crohn’s that I might not have told him already?
I wish I could give you some advise about Crohn’s disease, but I have nothing. However, I can send lots of hugs, prayers and good vibes from the east coast to the west coast! As always reading your blog is informative and inspirational.
LikeLiked by 1 person
Hi Hi! So yeah my diagnosis with Crohn’s is so fresh it took me ten tries to spell it right. I was diagnosed with mild ulcerative colitis about 5 years ago and then it progressed to moderate and I was put on an infusion medication (remicade). Well, now I just had a complication develop (fistula) that you only get with Crohn’s so SURPRISE that’s what I’ve actually had all along, AND I’ve developed antibodies to the remicade so it’s no longer working. I’m currently waiting on insurance approval for the new meds (a self-administered monthly shot and daily pills to keep me from developing antibodies to it), but I’m sitting unmedicated at the mo and it’s not fun. I’m still dealing with the new diagnosis because a complication a couple of years ago had my rectal surgeon saying HEY, well at least you don’t have Crohn’s………..
I asked my doc about diet alterations and she said that with today’s treatments it’s really unnecessary. That said, I have taken my level of spicy foods way down. I used to be a five on the Thai scale, but today I ordered my food at a three. Maybe not necessary all the time but with an unmedicated flare, my brain just sees eating spicing food as adding gasoline to a fire.
Your hubs is probably used to it, but the biggest thing for mine is that even with the meds there are just some days where you don’t feel well, just overall bodily malaise, lack of energy. I give myself permission to do nothing those days because pushing through them makes me miserable. So communicating through everything is key. That when I need a bathroom I NEED a bathroom NOWWWWWWW.
I’m so so sorry you’re going through this. And as you know, I’m always happy to be an IBD support group of one. 🙂
LikeLiked by 1 person
Ugh ugly Dx but waaay better to know & start breaking down those challenges head-on. Steroids the good the bad & the UGLY!
I’ve found when u need um, u take um 😐
I personally have M.S. so sometimes oral steroids other times IV. There is such thing as roid rage. It’s neither pretty nor fun. Roughly 2 years into my Dx on day 1 of IV steroids… I unable to sleep… painted the entire side entrance to my house- ceiling included then showered & went to work! Another time I again single handily painted the fully enclosed front porch! Other times I was on a crazy train of emotions. So to u & hubs, when it’s time for the big gun meds… hold on to your hats & fasten those safety belts as y’all may be in for a ride 🤪
Keep your wits about you and know what this is doing to your gut/intestines a similar condition is doing to my brain 🧠
That said knowing & acceptance are the best first steps to management.
That said, I have had the privilege of working with not 1 but two amazing women who managed some great things in their careers & life with the same condition. There are days when the sky is the limit & days when just “no.”
With much of life there seems to be an Ebb & Flow to our conditions. Embrace that & allow this to be a part of who you are not a definition of you.
Wow 😮 YEARS of THERAPY & that’s the best I can do! Maybe make beating me a personal challenge LOL 😂
Keep living pretty girl you will & are inspiring to so many 😉
Also consider documenting your journey here…. published book material😘
LikeLiked by 1 person
PS you have a beautiful smile!!!