Just Waiting…

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. So my current IBD meds are: 35mg Prednisone + Humira 40mg/weekly injection + 50mg 6MP.
  7. 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.
  8. 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.



7 thoughts on “Just Waiting…

  1. I am thrilled that you sound like you are feeling so much better these days! I know your still not at 100%, but you sound so much better then you were. Which, is pretty darn amazing! I hope you make it to remission without having to have surgery. πŸ™‚
    Also, I had no idea you were still breastfeeding through all of this. You may just be my hero for managing everything so incredibly well!

    • Hey MPB! Yeah I don’t talk about breaatfeeding much these days, as there isn’t much to say except “still going”. It’s actually easier to keep going than to quit, as BG is not ready to wean completely and it would be drama to “cut her off”. I have plenty of drama, don’t need more. It’s also useful to breastfeed BG when she needs comforting, like on the plane ride to/from California–the suckling helped to calm her and “pop” her ears. So I hardly deserve any awards when I’m simply making life easier by continuing–but thank you for the compliment πŸ™‚ XOXO

  2. Sending so much love your way my friend. Sorry I’ve been awol online though I’ve been holding you in my thoughts and heart. Life has been jam packed, not all in a good way but you’re always in my thoughts and prayers.

    • Also, I am also still BFing at nap and before bed for the same reason (and more so after Azulito had the crazy Stephens Johnson reaction to penicillin – so afraid of him needing even the alternate antibiotics now). Is BG always chilled about the business boob? A is becoming very possessive and sometimes we have turf wars – he thinks he should be able to nurse whenever lately esp in the middle of the night and not go back to sleep. Um – no. It’s made me wonder if I need to wean him then I get sad about that. Just curious if you’ve seen anything similar.

      • Oh man, “turf wars” is exactly right! We argue. I “kick her off” the boob and then we are both miserable as she struggles to get to sleep. She has been wanting to nurse more outside of bedtimes. My “business boob” is sore and I have been thinking about weaning. Yep. XOXO

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