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!