So the obvious–I’m f*cking done being sick. Things have been worse the past couple of weeks, owing to our moving house (stress), my Stelara is wearing off (like clockwork), I lowered my Prednisone (down to 20mg), and the last f*cking straw–wait for it–I had the flu last week (just shoot me).
After a couple days of toileting 12+ times per day, mostly blood, straining (felt like my body was trying to expel my colon with brut force), dehydration, pain, weakness.etc. I called up my IBD Nurse and said “Listen up–I am well and truly ready to schedule surgery. Tell IBD Specialist she won’t need to have ‘the talk’ with me on Monday and we can just get down to business.” And I meant every word. Something in me just ‘clicked’ and I knew I was meant to have the surgery, and I felt relief and resolve to move forward.
So I met with IBD Specialist yesterday as well as the Colorectal Surgeon (CRS) and the Ostomy Nurse. IBD Specialist said “Just in case you’re interested, you could try Entyvio, Cimzia, or a clinical trial drug”, but I shook my head and said “Nope, drug therapy is not for me. I failed 3 biologics–they all worked but wore off too quickly because I metabolize them too fast, so drugs are not the answer”. Which IBD Specialist wholeheartedly agreed, and basically wished me well and sent me off to the CRS. I asked the CRS a few questions and made it known that I may look like hell *now* but I used to be hot, so minimal scarring would be ideal, as I aspire to be an athlete when I’m well again and to look good naked. I’ll get into the logistics of things in another post.
I saw the Ostomy Nurse, got marked where my stoma will go, and am now testing out a Coloplast mio bag. Testing the bag out is a game changer! Most people don’t but I think everyone should. It’s not bad at all–I forget it’s even there! Easy to conceal under clothing. BG thinks it’s cool. I was building it up in my head that it would be strange and awkward, but it’s not.
Of course then today my colon has been much better and I’m like “WTF colon–quit playing games” but I am still ready for surgery. Mr. MLACS only has to use a week of vacation and they’ll let him work from home the second week, so he doesn’t need to file FMLA. He and BG will stay in a hotel near the hospital (since it is a 2hr drive from where we live) until I’m released.
Ok so so so exhausted, but just wanted to let you guys know “the scoop”.
T-minus TWO WEEKS until surgery!!!