I havent been online in almost a month now, and for anyone who is keeping up with my journey I owe you a big update.
4 weeks ago I had an excision surgery to remove (not cauterize) endometrial lesions from anywhere they could find it. The surgery was very successful – removal of endometriosis from my bladder and tons from my colon, exceptional amounts on my ovaries (with an ovarian suspension) and up along my diaphragm and ribs – with healing slow but steady. A few days after my surgery I also had an entyvio infusion which I was so scared about but didnt end up being as debilitating as they normally are.
Circa 4 weeks later I now have severe abdominal pain and I dont think it is from the surgery. In fact, I think minus the runny poops, I might be in a UC flare. Luckily I was scheduled for a follow up with my GI today and she wants to rule out c-diff. Im fairly certain its not an infection and I strongly believe – knowing my body so well now – that it is UC related and infusion related. My theory is that while I finished my three loading doses this is the first time my body has gone without an infusion in over two weeks. Once she rules out C-diff I think it is likely she will push my entyvio infusion to next week, making it a 4 week gap rather than an 8 week gap. In fact she says with entyvio its not uncommon (or becoming more common) that people need the infusions at 4 weeks rather than every 8.
The biggest thing for me right now is that Im exhausted. Physically; not mentally. My brain wants to put me on my running shoes and go for a run, whereas my body can barely withstand writing this blog. Keeping in mind that I also cant take any NSAIDS due to the UC, it means my body is working off the inflammation is truly the most natural way possible. As if I needed to withstand more pain?!? For those of you who are curious though, I did confirm with my doc that there is a growing prevalence of those with UC who flare up with NSAIDS. I thought it might be a myth and in fact cant be confirmed with me yet as I have too much going on in body at once. I just dont want to take the chance either.
So long story short, I made it through the surgery, I held off this somewhat predictable flare for almost 4 weeks and I think without the diarrhea and some infusions I might be able to battle some of this pain. Now… the efficacy of the surgery needs to prove itself to me.
Gonna hold off on updates until next week as I think I will safely have some clear answers by then.