33F, desperate for results. GI follow-up today
Honestly at my wit's end and feeling so anxious and exhausted from this whole cycle. I have a follow-up with my GI this afternoon and I desperately need some advice on what to ask for, because what I’m doing right now is just not working.
Right now I’m taking 290mg of Linzess every morning, plus a cap of Miralax and 500mg of magnesium oxide (which was dropped from 1000mg) every single night before bed. The goal was to build up the Linzess (started at 72, went to 145, now at 290) so I could drop the Miralax and mag, but it hasn't worked that way at all. If I miss even one of these, everything completely stops and I’m screwed for an entire week.
The worst part- the Linzess doesn't even kick in on its own in the morning. Nothing happens until I eat breakfast. Once I eat, it triggers a sudden liquid movement, but I NEVER feel cleared out. It’s completely liquid, but it feels like my pelvic muscles are clamping shut and not allowing the rest to come out. I use a squatty potty, have tried bending my chest down towards my knees (which sometimes helps), have tried the “MOO” , but I’m still stuck feeling like a lot of it is trapped inside of me. I haven't had a normal solid bowel movement in forever—it’s just continuous liquid, yet I still feel backed up, insanely bloated, fatigued, anxious as hell and sometimes restless at night.
My GI ordered a SITZ marker test recently to check my motility. The markers moved through my upper and middle colon just fine, but almost all of them ended up completely stacked at the very bottom in my pelvic floor/rectum area. 14 of the 24 markers were still present in my x-ray 7 days after the swallow.
They referred me to a pelvic floor specialist for an anorectal manometry, but the waitlist is brutal and I can't get in until December. The anxiety, depression, and physical discomfort from constant incomplete emptying are just wearing me down.
For anyone who’s dealt with pelvic outlet issue or failed Linzess: Is there another medication (like Motegrity, Trulance, etc.) that actually helped with the exit issue instead of just blasting water into my gut?
What can I ask my GI to do today so I don't have to keep suffering until December? Has pelvic floor PT helped anybody here?Are there specific suppositories, enemas, or tools that helped you when you felt like you couldn’t expel it on your own?
TIA for any advice or experience you can share!!
Answers to questions 1-6:
Do you have the urge to go, but you cannot? Or do you have zero urge to go? —Yes I’ve always got the urge to go but never could, until taking my combined meds. Now I get an extreme urge to go, usually only after eating. I do go (liquid) but never feel emptied.
Do you have alternating diarrhea and constipation, or just constipation?— without meds only constipation. With meds it is constant liquid diarrhea paired still with constipation
Do you have nausea, vomiting, acid reflux, difficulty swallowing, or early satiety (getting full really early into a meal)?— No.
Have you had this issue since childhood, or did it begin in teen years/adulthood/after a major life event (surgery? divorce? car accident? mauled by bears?)— Since childhood
Did you in the past or do you currently take any medications that could damage your intestines?— No.
Did you suffer sexual abuse as a child?— No.