Pardon Me While My Life Blows Up: A Continuation
SIBO, a gut issue, was finally diagnosed, wreaks havoc and remains unresolved.
Posted Oct 22, 2017
It’s been a little over two months since I posted my last blog “Pardon Me While My Life Blows Up,” and at the end, I promised a continuation. Here it goes.
In the beginning of June, I woke up in the middle of the night with incredible abdominal pain and diarrhea. The next day was Friday, a workday. I made it through Friday and on Saturday, I just curled up in bed. Sunday morning, I went to an urgent care center and waited for an hour-and-a-half, thinking that I would have been seen sooner if I’d gone to the emergency room. However, due to my history of frequent ER visits, that activity is something I’m making a concerted effort to avoid.
The doctor poked around my stomach. “Does that hurt? Gasp “Yes.” He sent me for an x-ray which was clear and ordered some blood work, the results of which were normal. Three hours later, he shrugged his shoulders and said, "maybe gastritis?” He told me if the pain continued to see a GI.
The pain got worse over the next few days, along with nausea and a loss of appetite. I’d take a few bites of something and push it away, full and disgusted by the sight and the smell. My weight started to drop.
I made an appointment at a Center for Women’s Health in New York City, where I had found the female cardiologist who had correctly diagnosed my heart condition in 2015 after a male cardiologist had told me my severe and unusual bouts of chest pain were “anxiety.” She'd prescribed the correct medication that has significantly reduced the frequency of the spasms.
I saw a female GI there within the week, who saw that I was in pain and immediately ordered a CT scan. We had a scare as there was a shadow on a part of the pancreas and my mom had passed away of pancreatic cancer, but an MRI was negative. An endoscopy proved there was no ulcer and that the pancreas was absolutely clear. There was one more scan, which was negative. I drank so much of that chalky white stuff (yuk). And the amount of contrast dye that was injected into my veins for the scans.
The GI told me that she wanted me to have one more test: a hydrogen breath test. Her office staff told me that the test takes three hours, plus there was more than two-hours travel time to NYC involved round-trip. Additionally, the test had some incredibly severe diet restrictions, starting two weeks before and becoming increasingly so in the time leading up to the test. I had to cut out at various times, my proton pump inhibitor, my yogurt (a favorite!), the probiotics, for example. Since my managers had been so generous about letting me take time off for all the scans, I wanted to wait until my vacation as not to take advantage.
I scheduled the test for the last week of August, not really thinking that anything was going to come out of it because hey, everything was always all in my head anyway. I almost canceled once or twice because the diet was such a pain. After the test, about a week before I was told the results would be ready, my weight dropped to a number that was so low, I felt terrified when I stepped on the scale. The weight loss from the combination of physical symptoms—nausea, abdominal pain (especially after eating), loss of appetite and feeling full after eating only a little bit—and the ensuing weight loss, was not driven by anorexia. Throughout this entire time, each time I got on the scale and I began to weigh myself less frequently, for fear of what I was seeing, I didn’t want to believe what I was seeing. Having lived through the short and long-term consequences and well-aware of the challenges to get healthy again, it was easier to remain in denial.
That morning, the number in the little window finally got through to me. It was one pound above the number I’d been hospitalized on an eating disorder unit in 2001 when my mother was still alive. That day I reached out to my old nutritionist M., who I’d worked with for eight years. She was surprised to hear from me, but welcoming and gave me the first appointment that was available. I also reached out to R. who runs an eating disorder recovery group that I participate in. R. listened to and heard the panic in my voice. She thought it was a strength that I was reaching out to her. And she told me why I was so scared, something which I didn’t even realize. R. told me that even though I had not been actively anorexic, at this point, for five years, my brain, anorexic brains were permanently altered and were triggered by weight loss, even if that weight loss was not achieved by starving.
The GI’s office called me earlier than expected with the test results.
“The hydrogen breath test is positive," some insensitive soul said. "The doctor wants to know if you want to go ahead with antibiotic therapy.”
“Positive for what?”
“Positive for SIBO.”
“What the hell is “SIBO?”
“Small intestinal bacterial overgrowth. The doctor wants to know if you want to go ahead with antibiotic therapy.”
“I guess so. Why can’t I speak to her?”
“She’s away. Didn’t she speak to you before she left?”
“No,” exasperated I almost slammed down the phone, but then I heard a voice asking me to confirm my pharmacy.
No one told me that one of the antibiotics had to come from a specialty pharmacy in the middle of New Jersey and would require me to spend the entire next day on the phone jumping through hoops from this pharmacy to the doctor’s office to the insurance company and back to the pharmacy. The average retail price of Xifaxan is $2,383.36. Luckily, the entire cost was covered by my insurance.
Two weeks on this and another antibiotic, I felt a tiny bit better, but not great. I still hadn’t been able to gain and keep on any weight. When I did gain any, a couple of days later, I’d get sick again and lose it. I was still in pain, exhausted and my migraines were out of control from the lack of nutrition.
The GI recommended another medication called EnteraGam which is designed for IBS or irritable bowel syndrome. It’s a powder that I mixed into my yogurt and it was from yet another specialty pharmacy, this one in Missouri. This stuff was not covered by my insurance.
After about two weeks, I felt as though it may be helping. I was able to eat more at each sitting, though I still hadn’t gained weight, the pain had diminished somewhat and I wasn’t as nauseous. Then I got a migraine that lasted for three days before I called the headache center where I see my neurologist. That day the migraine was so bad, I could not look at a computer screen so I took the day off.
That migraine felt as though it knocked the SIBO practically back to the beginning. Weight still low, in pain, nauseous and totally exhausted.
The GI is thinking about what the next steps are. I’ll let you know.