Gut Issues, IBS-C, and Ankylosing Spondylitis
Editor's note: Read the first part of Katie's journey here.
Have you ever experienced stomach pain and the need to evacuate your bowels so severely that you start sweating, shaking, slumping over, becoming nauseous and/or vomiting, and inevitably begin to blackout and lose consciousness? You may have even started ripping all your clothes off, desperate to cool down, all the while feeling like you’re fighting for your life? If you’re someone who has experienced childbirth, you may equate the pain to labor. And this is all happening because you just need to have a BM? If so, same.
This wasn't the first episode I'd ever had
These “episodes” were not something foreign to me. They had happened a few times before, the first time ever being when I was pregnant with my first child. And as I said, the pain is so severe that I did, in fact, think I was in pre-term labor and went to the ER!
Turned out I just needed to poop. Talk about humiliating. It happened once more during that pregnancy and then again during my second pregnancy 2 years later. And then oddly enough, it happened during two separate severe AS flare-ups. I honestly never gave it much thought until it started happening regularly around August of 2021.
Blockages and more changes
When the "episodes" first started happening at this point, it seemed to me that there was a blockage issue, which made sense with chronic constipation. Once I was able to clear the blockage, the pain would immediately stop. The only thing that had changed was that once I was able to clear it, it was immediately followed by diarrhea until I was empty (or so I assumed). Luckily, I was scheduled with a GI right around the same time that this all began.
My first GI appointment
I was scheduled to see a nurse practitioner rather than the actual MD at my first appointment due to him being booked out for months. No problem. I detailed every symptom, comorbidity (primarily ankylosing spondylitis), episode I’d ever had, and even laid out my entire family history of IBD to make sure she understood the complexity of the situation. She ordered a stool calprotectin test (checks for inflammation in the bowels) and wanted me to start a prescription for IBS-C. Well, insurance denied the medication, so that was off the table. And to my surprise, the calprotectin test came back normal. She said it was most likely IBS-C and didn't seem too interested in looking into it any further.
Things continue to change
By October, I had experienced the third one of these “episodes”. I would take Miralax when I remembered, but nothing seemed to make me regular. And by the time November rolled around, I was having at least one “episode” a month. It became my new norm.
A new type of upper abdominal pain
As if I thought things in my GI tract couldn’t get worse, the week before Thanksgiving of 2021 everything seemed to come to a head. It was Wednesday evening. That following Thursday morning, I was going to have an ultrasound to look into a suspected vascular issue and was told not to eat anything after midnight.
Around 2 AM, I woke up with what I thought were extreme hunger pangs accompanied by pain in the center of my upper abdominal area. My stomach was making all sorts of unfamiliar sounds, and there was all of this strange movement that I would describe as a bubbling sensation. I went to the bathroom several times because even though my issues were in my upper abdominal area, I felt like sitting on the toilet and bearing down would bring me relief, but it never did.
Does anybody else experience unexplained stomach and bowel issues like this?
Do you live with any other conditions in addition to AS? (choose all that apply)