Hey peeps! Last we spoke, I was headed to see the IBD specialist’s Nurse Practitioner. Well that happened a week and a half ago, and I figure I should update you on my colon.
- I am starting Stelara ASAP. But (there is always a “but”) the infusion center scheduled me *way* far out on July 12th and that is not acceptable, so together with my IBD MA (medical assistant) we are working to figure out WTF is up with that.
- I haven’t spoken of it in awhile, but I still have a perianal fistula. Looking forward to getting that resolved one way or another in the near-ish future, I hope–fistulas are tricky, fickle things.
- I managed to drop my Prednisone from 40mg/day to now 35mg/day. I accomplished this by dropping 2.5mg instead of 5mg. I plan to stay at 35mg until after my first Stelara infusion, unless for some reason I am compelled to drop to 32.5mg–but my symptoms have increased a bit so I doubt I will attempt that.
- The 6MP does appear to be working. My toileting is down to 2-3x per day, mostly formed (albeit oddly), with only a little blood and mucus. I do still have “urgency’ when I need to poop, but I can’t complain–I am SO much better than I was a couple months ago. Amen.
- Plan is still to try Stelara and then have the surgery (ileostomy) if the Stelara doesn’t work. I feel so close to remission right now–as if I’m hobbling toward an imaginary “finish line” in a nightmare-ish marathon. It will really crush me if I have come this far but can’t reach remission. Like come the f*ck on.
- So my current IBD meds are: 35mg Prednisone + Humira 40mg/weekly injection + 50mg 6MP.
- I am also still breastfeeding BG at naptime and bedtime. She is healthy as a horse and has only had a few minor headcolds in 27 months (no croup, never had to suction her nose). I really feel the breastmilk is what boosts her immune system, and since my immune system is so f*cked up I am elated that BG’s is functioning so well and will continue to breastfeed her for awhile. So at least my body is doing something right.
- People have been asking me if I’m going to have another kid. My answer is I want to, but I have to get better first. What I don’t bother mentioning is that even when I do “start trying” I hardly expect things to be easy or timely, because that is not my lot in life. But I really, really hope it works out.