Warning: Poop talk ahead
Okay, so I’ve been miserable for several weeks, and there has been some discussion regarding the potential need to increase my Humira. There was also concern that I was suffering from C.diff colitis, only now I’m in the same place I was this same time last year, painfully constipated. I actually was obstructed, but the E.R. in my small town was inundated with influenza cases. They didn’t even order an x-ray despite the fact I was screaming in pain, couldn’t even pass urine, and was only having leakage from my rectum. The doctor did a rectal exam, announced I only had an impaction, and told me to go to a drug store, get gloves, an enema kit, and laxatives, and go home to manually extract it myself. Yes, that’s what you think it is, but in case you’re not thinking it: he wanted me to put gloves on, reach into my own ass, and pull out the fecal matter that was “impacted.”
I later talked to my G.I. doctor, who was outraged to hear just how much was stool was involved. He confirmed that it was more likely that I had an obstruction, but that with all the laxatives, enemas, and my willingness to stick my entire hand (past my wrist) into my own ass, I had managed to pass it all. Apparently I was lucky I didn’t suffer an intestinal rupture, as laxatives were not indicated given the severity of obstruction symptoms I had.
So, here I sit, constipated and annoyed with life, treating my symptoms conservatively because I have passed some stool, and I’ve been eating relatively little, when a new fun symptom emerges. I had been hesitant about the antibiotics just because I don’t, as a rule, like to take them unless proven necessary. I’ve had a lot of allergic reactions, and I harbor some nasty microorganisms as a result of repeat exposure due to infection. That being said, I recognized that I could very well have a decent amount of C.diff in my system, and if that were the case, a course of Flagyl seemed appropriate. I didn’t get nauseas or miserable after the first two doses…but I was really itchy, something I attributed to a different medication I was taking, Sucralose.
Yesterday the numbness I’d been noticing in my top lip went from mildly annoying, to incredibly severe. I looked in the mirror and was shocked to notice I suddenly had a very plump pout. I used to think I wanted lip fillers…then this happened and I realize I would just look ridiculous. Unsure as to whether it was the Flagyl or the Sucralose, I decided to discontinue the more likely culprit, the Flagyl, and go from there. Once I’d been free from the Flagyl for 24 hours, the numbness decreased, and no further swelling occurred, but clearly damage was done.
Today I noticed, despite using chapstick, my lip was peeling. It wasn’t just flaky in places, it was literally sloughing off, on the outside and the inside. My gums and the inside of my lips were so raw they were bleeding. I was on the phone with a friend and after 30 or so minutes of talking I tasted something metallic, I spit, and realized my lips, and gums, were bleeding. Food and even water burn my mouth violently now. I’m able to tolerate some Italian ice, but even that is difficult.
I’ve had flares, but this is something much worse, and I’m concerned I may have Steven Johnson Syndrome. This happened years ago, with Augmentin, but the doctors weren’t sure whether or not it was SJS because I was later diagnosed with Behcet’s. I tended to err on the side of being reasonable…both conditions are rare…what were the odds I’d have both. Now, as I confront my scalded mouth, I have to wonder if I really did have SJS, and I’m just that lucky. I also have to wonder if the worsening abdominal pain, mucous, and bleeding, are from the constipation, potential C.diff, or if Steven Johnson Syndrome is eating my intestines.
There is stress in my life, too, and I recognize that can trigger a flare, but I don’t have any telltale ulcers, at least not externally, and while the pain is similar, the presentation isn’t. I tell myself I need to reduce stress, but the things that make me happy also make me stressed, so it’s a fine line between satisfying wants and needs, and slowly killing myself in the process.
When you have an autoimmune condition you go through periods of denial. I have a friend who had a kidney transplant in her teens, and admits that she didn’t initially take the best care of herself post-transplant. She still had the disease that damaged her first pair of kidneys, but there is this young invincible attitude which overcame her. For me it was different. I started having noticeable symptoms around age 20, but life was complicated for me at that time, and I was able to sort of deal with the ones that bothered me, and shelve the ones that didn’t. As my condition progressed, and my life semi-stabilized, I was able to accept there was something wrong, and attack the issues as they arose.
But it was never holistically.
I always attacked symptoms. When my issue was nausea, and they found my gallbladder was basically failing, I turned my sights on the fatigue. When they told me there wasn’t much they could do for that, I attacked the joint pain. I catch myself doing the same thing now, even though I have a systemic diagnosis. It’s kind of hard not to. With Behcet’s your main doctor is a rheumatologist, but you still have a primary care doctor who handles your random infections. Those random infections may or may not be Behcet’s related. (My bronchitis for example was inflammatory, possibly viral, which means it could have been related to the Behcet’s…or not.) I also have a neurologist, and need to find a gastroenterologist, urologist, and potentially a nephrologist. Probably wouldn’t hurt to toss in a cardiologist, despite my 72-hour EKG results having been normal-ish.
So here I sit, my mouth burning, wondering if I have Steven Johnson Syndrome, or some random drug side effect, but knowing that I’ll probably have to talk to a handful of doctors to sort it out. I still need to see a GI specialist, and at some point a nutritionist now that I think about it…
The point is, nothing is simple when you struggle with a chronic condition. I’m realizing I need to stop denying the totality of my battle with Behcet’s. Even when my symptoms are managed, I still have the disease. I can live my life, but I need to also acknowledge the things in my life that can flare my condition. Stress, lack of sleep, various medications, all of those things and more, can cause a flare.
Now…how do I actually apply this knowledge without not living my life?
Fun little conundrum right?