Not all IBDs are Created Equally
a guest post by Kenzie.
You’d think it would be easy to figure out what kind of IBD you have, but things aren’t always that simple. For instance, in my case, I have had skip lesions in my colon. Which is more consistant with Cronh’s Disease but my doctor won’t diagnose me with that because I don’t have any inflamation in my terminal ileum. Or grandulomas. Which are more consistant with Crohn’s Disease than Ulcerative Colitis. But because I have inflammation in my colon I’m stuck in a grey area.
There’s speculation in the gastro world that IBD is a spectrum disease. I don’t think that there’s been a whole lot of research done on this. But one of the problems right now is for someone to get biologic medications, I’m pretty sure you have to be diagnosed with Crohn’s Disease or Ulcerative Colitis. There is no option for biologics for people with Indeterminate Colitis unless your paperwork says you have CD or UC even if your doctor isn’t sure what you have. Because that’s what happened to me.
You see, my doctor forgets that I have Indetermiante Colitis. My chart says that I have Ulcerative Colitis. There is no diagnostic code currently for Indetermiante Colitis.
Why? I have no idea.
Is it changing soon? Possibly in 2018 when the new diagnostic codes come out.
Does this fix anything? Probably not when it comes to some perscriptions because according to the FDA, they don’t treat Indeterminate Colitis even though it’s a form of IBD.
I actually saw my GI the week of Thanksgiving and he was talking about how I might have Indeterminate Colitis because of all of the problems I’m having. Which we have talked about in the past and that he said I have Indeterminate Colitis. Did I tell him this? No. Right now, I’m kind of tired of fighting the system.
I don’t want to have to remind my doctor what I have. I don’t want to have to explain to everyone what Indeterminate Colitis is. There should be a diagnostic code for it! I shouldn’t have to fight to get a proper diagnosis. And some days you’re just tired of fighting. Everything else is already a battle. Trying to get healthy, fighting through work when you’re exhausted. And trying to change that on top of it just seems daunting some days.
Especially since Crohn’s Disease and Ulcerative Colitis get so much publicity. It’s only been recently that I’ve started to see mentions of Indeterminate Colitis. And some days it sucks. Some days you don’t really feel like you fit in anywhere because you’re not a Crohnie or you don’t have Ulcerative Colitis. You see all of these patient advocate boards and I always look for someone with Indeterminate Colitis. I don’t think I’ve seen anyone with it on any of these boards. And it’s frustrating (if you know of someone, please let me know. I’d love to be wrong about this).
There also aren’t a lot studies currently being done on Indeterminate Colitis. A lot of times it excludes you from studies because you are an outlier and may throw the data off. Which sucks. You want to find answers but you can’t find any because no one is studying what you have.
So if you’re one of those people wondering where I’ve been. This is pretty much how I’ve been feeling and what I’ve been dealing with. At least when it comes to advocating about IBD. Along with dealing with heath issues. And I’m still trying to figure it all out.