One week health update.
Alright, let’s dive right in.
11-18-2024 I had a virtual meet with a PA at my colorectal surgery office. She presented the option that I could get botox injected into my rectum to help it relax and then follow up with intensive pelvic floor physical therapy (PFPT) after that. Then she said that I have something called levator syndrome (which basically means muscle spasms in my rectum) and said that I could talk to a lifestyle professional, whatever the hell that means. She said there isn’t much to do beyond that but could refer me to the Cleveland Clinic or to someone else. I ended up losing my cool that I like to hold on to and started crying. I told her I just wanted my colon cut out of me. She listened and then just reiterated that there wasn’t anything else to do. After this conversation, I basically was like I have nothing to lose and sent them a message that I wanted a colostomy. They then sent me a gaslighting message about how they don’t do elective colostomy procedures to which I responded back and said it wouldn’t be an elective procedure, it would be a treatment option and cited a paper that explained that it was a treatment option. They never responded back to me, which like valid I guess because they didn’t want to deal with me. But I’m honestly just so fucking sick of these doctors who think it’s their way or the highway. Like I’m fucking smart too and I know how to do research, but they won’t listen to me. So many doctors have just dismissed me or brushed me off to the fucking side and I’m fucking sick of it. I’m sick of being treated like I’m not smart and that I don’t know what I’m talking about. And yes, I don’t have a MD but honestly at this point I feel like I’m getting close because oh how much I’ve learned.
So after that I just felt defeated. Like what the hell am I going to do?
So I did a few things:
- I reached out to the dietician and I am going to start the elemental diet to (1) give my body a rest and (2) to see if I can figure out what I am allergic to.
- I made an appointment with my allergist because even though she doesn’t think it’s MCAS and the SM MCAS test result came back negative, there is something going on because I get SO sick when I eat certain things.
- I have an appointment with my gastroenterologist for like a week and a half away and I’m going to ask her a lot of questions.
- I talked with my PCP and I’m going to switch from metoprolol to propranolol to see if that helps at all with the muscle spasms I seem to get after I take my beta blocker.
- I am probably going to consider the rectum botox but I feel like I’m in a pissing contest with that doctors office and secretly I want to fucking win.
- I called my GI doctor and had her prescribe me another round of Xifaxan for SIBO which has tremendously helped me.
As I described it to my therapist this week, I basically was this ceramic jar that has just been sitting there and this last week a crack that has been there for awhile just started to widen and deepen and eventually shit just broke. I fully cracked and I felt like I went full crazy. Even though my therapist reminded me I was hardly crazy at all (not even really) and that losing it was warranted in this kind of situation, most people would be losing it to have to continue to go through this bullshit. It just didn’t feel good. I hate that these doctors have pushed me to this point. It makes me fucking angry.
So all that being said, I broke this week mentally and what felt like physically.
I cancelled the rest of my appointments for the week and just worked. Although another “fun” thing is that I need to renew my ADA accommodation of working remotely for the time being. I met with the ADA person on Friday, which was also a joy, not. And even though I keep pushing myself to be positive through dealing with all of these difficult people, sometimes all I want to do is scream. I want to go into the forest and just scream and cry and scream until I lose my breath and just lay there for awhile.
I feel like this is the first time I’ve truly just cracked and I don’t think it helps that I hate the dreary, cloudy winter time in the midwest. It’s the worst and it’s for sure not helping my mood.
Okay I know that my ADHD has really taken over this post and I’m sure it’s been hard to follow, but welcome to my brain.
I am going to end this sort of by going through what I like to call the Kylie theory of the week (maybe I’ll make this a regular segment in my future posts, we will see):
- So what I think is happening is two fold.
- (1) I think that I am allergic to food? Or something along those lines and every time I eat something I’m not supposed to, I keep getting really sick. Like nausea, joint pain, dizziness, muscle pain, heart palpitations, fatigue. It’s not good. That’s why I think I have MCAS but we’ll see.
- (2) I think that my gut has just called it quits. I think that it’s been trying to quit for years and then last fall something was just like okay this is it, bye. And it has basically stopped moving things through properly. Like no matter the size of the meal or what I eat, I feel like it gets stuck in my stomach. Then it barely moves through my intestines and then it refused to move out of butt and poop. And I think because the whole GI system is doing this, it’s causing my SIBO infection to come back immediately because the lack of movement is causing a build up of bacteria. It’s also causing me to have really bad hypoglycemia symptoms because I think with the lack of movement, my body thinks that there is more food than there actually is in my stomach.
This might sound insane but I think I am on to something and I am looking forward to having more conversations these next two weeks with my different doctors. So I’ll keep y’all posted. Even though I think like 1 person reads this, if that, this is going to be an incredible journal someday to reference back to and be like holy fucking shit, I cannot believe that I lived through that for so long.
(Picture is from Ann Arbor, MI, USA.)