I’ve pulled back a little bit from the IBD community lately. I’ve had a lot of random anxiety over the past couple of weeks, and reading about IBD seems to be making it worse.
It’s hard, because now that I’ve had surgery, I feel like I’m stuck in some kind of lonely place between my IBD life and the “real world.” I’m nowhere near as sick as I was before surgery, but I’m still not fully recovered. I’m having some health issues that I believe are related to the surgery, but I have no idea how to address most of them now that it’s something a GI doctor can’t help with. Surgeon? Not a structural issue, so probably not. PCP? Not sure this is in her realm of expertise. Sure, she could make a referral, but I’ve had enough specialist appointments where they found nothing and looked at me funny to make me wary of that option. So… I do nothing. I beat myself up over it, because I’m supposed to be “better” now, but I have these new problems that are making life pretty uncomfortable.
I really wish IBD patients had better support after surgery, but I don’t foresee that happening anytime soon. Honestly, many of us don’t even have the support we need before surgery. I just wish someone had told me that this could happen. All I heard about was how much better I would feel after surgery. In some ways, yes, I do feel somewhat better. But I certainly don’t feel healthy.
So this is where I am right now, and I find myself asking… Can you ever move past IBD? I don’t think I could ever truly forget about it. My ostomy is a pretty good reminder of that. But will I ever get past this? Will I ever truly feel healthy? Would I even know what that felt like? I’ve been sick for a pretty long time, even years before my diagnosis. Will I ever be able to look back on this time years later and think, it’s okay, I made it, I’m fine? Or will this be the beginning of the realization that you can never really “get over” IBD?
I’m not sure I’m ready for the answer.