Okay I'm sure you are all sick of me by now (will take down if asked, my apologies)
I just wanted to add an update post to my journey/horror story and ask for ongoing advice. I spoke to my GI in March/April and had an MRI (MRCP+abdominal and pelvic, all without contrast due to allergy) to follow up on the low fecal elastase and rectal pain. Everything appeared normal. At the moment we're all trying to avoid a colonoscopy since I don't really have any signs of colitis and I'm scared shitless (no pun intended) of the prep process and the possibility of things going wrong after all the horror stories I've read online. My gastro thinks a scope could show issues in the rectum, but without any obvious signs of colitis (all my poop is formed, there has been no blood, calprotectin only 57 with active symptoms), she doesn't think that it would show much else and doesn't think it's worth the suffering. Her guess is that the Giardia infection triggered hypersensitivity/hyperalgesia in my colon and rectum as part of the Pi-IBS. We have no idea where the pancreatic stuff factors in. I'm currently wrapping up school so we're planning on considering further investigation once I graduate in a few weeks.
Update: I had a solid 14 days with very little symptoms (seemed correlated to an increase in fiber) then got constipated again and now the rectal discomfort and spasming are back. F*cking hell.
My symptoms seem to follow a pattern of 5-10 days reprieve, followed by about three days of progressive worsening, followed by 1-7 days of utter hell, then a tapering-off period, rinse and repeat. Each time my symptoms flare up does seem incrementally less severe than the last time and I've had that long stretch of very minimal symptoms, so things are SLOWLY improving but much slower and I'd be going backwards. It has been SIX |Expletive| months since the Giardia infection was eradicated and I've seriously had enough.
My pooping schedule has also been a little wild, I've been pooping earlier in the morning than usual and then usually again anywhere from 4-8 hours later, and occasionally a third time. All solid and so far no more than three a day, but a little annoying since it's so uncomfortable when I do have to go. I can also almost guarantee that whenever I get on the bus to go to school unless I've already been within about two hours before I'll have to go while in the bus and be touching cotton by the time I reach my destination. That is probably largely psychological because I always get stressed about having to poo et voila, self-fulfilling prophecy
Another thing that's developed concurrently but not necessarily directly linked has been wicked insomnia, where I'm up and wired and one night recently pooped at like midnight which spooked me (I had never fallen asleep that night and felt the hard stool poking my butt right at the exit). This kind of leads me to believe that the level of anxiety I'm in is definitely worsening the constipation and prolonging healing even if the infection is what triggered this in the first place. I know night time poo is a red flag but it wasn't exactly the type of night time poo usually talked about (it was solid and didn't wake me from sleep)
Original post:
Some of y'all may remember me from the "I wish pooping was less dramatic post," but I'm asking a serious question here. I'm marking this as a "rant" because that's a lot of what it will be, but any and al advice is welcome since I'm at my wits' end and my doctors don't seem to be taking this particularly seriously.
So last December I caught what was presumably Giardia off the family puppies (anywhere from 1-5 diarrhea stools a day, tenesmus and severe cramps and gurgling, generally felt pretty ill) and got a 7 day course of metronidazole for it. My doctor said many of her patients went back to normal within 24 hours of starting it which I didn't, it was about five days of my poop slowly going from liquid to mush all the way back to solid again. But then many of my symptoms didn't resolve. To this day I still have tenesmus that drives me absolutely crazy (it always feels like I'm about to shit my pants) and constipation with occasional fecal urgency (once my gut finally moves things through, it means business). I go 2-3 times a day and it's generally Type 2-4 with the occasional type 1 or 5, often slightly pale in color and sometimes a little greasy or strange looking. Especially recently it takes a lot of wiping, and I'll go back a couple hours later and there will be a teeny tiny piece left behind up in my butt from where I couldn't get it all out the first time. I went to my doctors and my fecal elastase was very low (63), then even lower (7), then randomly went up to well normal (484). Hoping for another test since I still have the exact same symptoms. Calproctectin borderline (57) and the two days I took digestive enzymes for the low fecal elastase before getting the normal reading just caused a feeling of being incredibly full and my stomach pushing against my ribs.
This is the second time in my life something similar happened ,the first time being when I was a toddler and had a similar infection. At this point I"m about to go to college but it's hard to do anything when I always feel on the brink of soiling myself. Any suggestions or insight?
Edit: My doctor prescribed Bentyl to see if it would help with the intestinal spasms and feelings of (usually false) urgency I get, I plan on starting it this week. I'm also probably in for a pancreatic MRI due to my low pancreatic enzyme levels and a colonoscopy, because we all know the prize for diarrhea is...free diarrhea all night! I'm seventeen and really did think I had at least ten more years, but noooo
Edit/Update 2: The Bentyl did very little, surprise surprise /s. I've been instructed to discontinue it. We're kind of suspecting this is more than just Pi-IBS and I'm being referred to a new gastroenterologist.