Posted 6/20/2021 6:53 AM (GMT -6)
OK, got (significant) issues I'm still having abdominally, even after the 4+ surgeries/ileostomy surgery. Desperately trying to crowd-source any info I can gather, sincerely folks.
16 months ago I went in for a colonoscopy, had a hemorrhoid that bled(which I get from time to time, I'm 51 now) and a benign pollup. Went from procedure straight to ER with severe abdominal pain. No punctures found (weird), discharged with surgeon referral. I was semi-healthy before I walked in...never the same after that.
That severe abdominal pain turned into the sickest I've ever been. Spent next 40+ days in bed with severe pain with fever going to 104+, at times. Literally 16 ER visits til I had surgery 45 days after procedure.
IMPORTANT: surgeon reviewed case. Did NOT find the usual suspects: blockage, perforations, IBS, Crohns, diverticulitis, benign pollup, no cancers. He tells me we need to go ahead and take that pollup out and he wanted to go ahead and remove a foot of intestine, as well. He said whatever infection I had, had to be coming from that. He was convinced that was the cause of everything. Said, "look, I'm gonna take this out and I promise you are going to feel better.
I did not get better. Almost died 3 times, got septic, reqd 3 additional surgeries, went from 160 lbs to 105 lbs, and then the real hell hit: Ecoli, C-diff, MRSA, Candida A and 2 others, ALL went antibiotic-resistant. Blew thru last-line of defense antibiotics, plus 3 experimental drugs. Last one worked, as they advised me for 3rd time I was dying.
Was suppose to discharge to long-term care/nursing home for 6 months...ah, but Covid was a comin...it was 1/28/20. My ID dr is the ID director of local health system. Covid wasn't quite in news yet, but he was hearing bout it. Sat down with me, explained what was coming, we decided sending me home with home health set up. BTW, thank God for that...all 66 patients at the facility they were sending me to died from covid. Whew, caught that break, at least!? Still experiencing same abdominal pain as before, but now I have a host of other conditions that have developed, as well. Coming to learn some are complications from my ostomy set-up, etc. I finally got the wound-care aspect handled pretty well. Got my bag and base changes down pat. Diet and digestion completely different.
As a result of all the infections I was told to never have any kind of surgery again, like ever, as those AMR infections will come back, deadlier next time around, so my ili will be permanent. I can deal with that, I suck it up, put my big boy britches on, and stubbornness, and try and go face life! (Some days, admittedly, I cry every tear I have, too...some days really test your will to live, frankly) Admittedly, I am better at that some days than others...but I have to work a STRONG program mentally, emotionally and spiritually to...well...keep the bad and really dark stuff/thoughts at-bay. Living life requires much much more effort and work now, no getting around that, man. Either accept it, radically if necessary, and try to keep living or give-up...I'm a stubborn bloke, so I'm gonna fight and live, a while longer, at least!
I still experience a high level of pain that I'm sure you probably experienced, too, which is in the 7-9 range on the Baker-Wong scale. This is the area of my recovery giving me the MOST problems. The most effective medicines that work for me are opiates, of some kind. Have tried all the non schedule II meds, nothing works but that class of meds. I'm allowed a 10mg percoset every 6 hrs. Works great for my back/sciatica stuff, which I also have, but does nothing for the ab pains. I live in Oklahoma and I'm told by my dr that I'm at the highest allowable dosage, per state law (90 morphine ml equivalent). I don't know how all of that works but if percoset is a 1:1 equivalent then by my math I'm at 40 mml's a day?! At any rate, seeking feedback from what others are taking and their dosages, should someone have the courage to share with me.
Lastly, been back to the ER at least dozen times in past 6 months (to be clear, I would have gone back to that ER every dang week if it wasn't for covid! Chief of ER medicine knows me by name and well. She visited with me in the ER last couple of visits and explained that yeah, ordinarily I was sick enough to be admitted, however, there were simply sicker ppl ahead of me. I saw ppl in that ER and understood, painfully, the choices those docs were having to make with who would receive care and who would not...the best and worst of ppl you'll ever see) Same symptoms each time, severe abdominal pains, vomiting and mild fever. The ili is properly doing what it's supposed to do, expelling waste, etc., it's some kind of unknown infection/illness.
Saw surgeon again 3 months ago, got several post-surgical/ili-related complications: high-output stoma, some kind of itchy crap around my stoma that'll drives me crazy cause I can't scratch it! Softball size peristomal hernia, a small ab hernia on the left and another small one developing under by base. Feels like I got to defecate all the time. I have to do little enemas now, but I don't think there's anything there to expel?! Whatever I consume shoots thru the system. Took a time release supplement recently and that pill went thru my body and into my bag, intact, in an hour. I'm experiencing both digestion and absorption issues. Surgeon just says basically, "hey man, this is your new-normal and I'm gonna have to just find a way to deal with it". I appreciate direct candor, no issue. So, I work on my diet more, stick to the foods that body my I can tolerate, you know the drill...
What he said next struck really got my attention. He said: we never did figure out or identify that original infection or its cause. He said it has to be something autoimmune. To be clear, everything that was wrong pre-surgery is still happening, with the exception of the high fever frequency. Low-grade fevers are more common and sporadic.
I'm now scheduling to get in to my PC to go back to the drawing board again?!
Has anyone out there had similar issues? Has anyone had experience with infections of unknown origin, unverifiable abdominal problems in general?
Feedback/experiences sought...thank you for time and patience with me!