I got home last night after a ridiculously long and tasking day, wrote a tittle in the edit page, drank two bottles of Blackfly Long Island Iced Teas and proceeded crawl into bed and cry myself to sleep. I was in no position to be putting feeling into thought, thought into word and definitely word into sentences that other human beings may be able to comprehend. I’m probably still incapable, but new day new attempt.
So much has been building the stress lately at home. Trouble with the 10 year old, severely troublesome symptoms and an ass load of relationship woes going on WHILE we get a visit from the MIL (I know…timing is perfect right). All of this boiling up the weekend before I go in for my pathology report appointment.
I had gotten a call mid last week to come in and go over the results with Dr. GP because Gastro Guy had sent over the results FINALLY. This had me a little confused though, since I already had an appointment with GG on Friday to go over everything (since… ya know it’s his specialty), why should I need to make an even sooner visit to my primary doc. Either way I did it. I figured, hoped, prayed…whatever, that it meant that they found something and we have some good news.
Yes I know it sounds horrible. No one wants a big long tube shoved up their asshole, cut out over a dozen little bites and WANT them to find something wrong with it. Except for me…
To clarify. I don’t want to have and IBD. I don’t want to be sick at all in fact, but I do want answers. Coughing up blood on a semi-regular ocasions isn’t normal. Abdominal pain dropping me to the floor isn’t normal. Not being able to eat solids and have them pass from my stomach to my intenstines and being brought back up isn’t normal. Bloody, mucousy stool that even when runny cannot make it’s way out of the colon isn’t normal. Excessive bloating, pressure and strange tender spots is not normal.
It’s been 9 years since my IBS diagnosis and I’ve gotten pretty decent (I think) at being able to tell the difference in symptoms between that and whatever all this newer bullshit is. Having an IBD is not something I would wish on myself or anybody else, but I do want some fucking answers. Having my pathology come back positive for Crohn’s or UC would have meant moving forward with real new information.
It would have meant peace of mind knowing I don’t need keep feeling like everyone thinks I’m exaggerating or misunderstanding my own body (or that if I just tried this one herbal remedy or exercise or….you get the idea… I’d be good as new). It would have meant being finally able to work on a treatment plan that isn’t just laxatives, probiotics, enzymes, a fuck load of dietary complications and WAITING for more tests and hoping for more answers.
I’m assuming if you’re still somehow reading through my mess or rantings you’ve guessed the pathology came back clean of any active Crohn’s inflammation. Yes I’m aware that people are still diagnosed even after negative biopsy results, but until talking to Gastro Guy on Friday it would be pointless even having gone into depth covering the 3 page report. GP is sending my newer files to the Rheumo Chick and it may or may not be up to her to get a Neurologist on board. I think I might be finding myself making Gyno trip as well. If I’m gonna have a Harem of doctors, might as well go all out….
I think the GP I have loved so much has lost his steam in helping and I’ve simply become too hard of a puzzle to solve, he’s ready to pack me up and let me be someone elses problem. He’s there to fill out the scrips and navigate traffic between the specialists and he still is doing that job well. As for making the patient feel like she knows what the fuck is going on. He’s got an F for effort…
I’m pissed, I feel clueless and I feel helpless. On top of that I’ve been spitting up and shitting out blood more than usual, I’m spotting (this is a new development… hence the Gyno trip) and just over all I feel on deaths doorstep. Of course I didn’t bring any of this up because the appointment wasn’t made for me to discuss how I feel….it was to tell me that apparently I shouldn’t feel that way or at least that they still don’t know why but maybe by this time next year they will have completed a couple more tests and they can guess again.
All of it put together just makes me question a lot of things about my medical journey the last year or so. I’m losing/lost faith in my team at the moment and my support system at home is less than stellar currently which makes it just difficult to push through all of this with any sort of positive spin.
I just want to give up. I’m simply hardwired not to. Coffee, FFDP cranked and a call to the Gastro Guy’s office to confirm my appointment on Friday. Hey, maybe he’ll have some more in depth news that might lead to better way to go (that sounded positive didn’t it?)…but probably not.