November, 2013 - March, 2014
I had just started a brand new job a month and a half prior (in September, 2013). I was working out of my house for a web development agency in another state. It was the job I’d been dreaming of for several years and I was incredibly excited. I got up in the morning, ran a 5-mile hilly route with my pup and was pleased with how easy it felt. I was training for a marathon and was seeing progress in my level of fitness. I got a shower and ate breakfast and then headed upstairs and got to work for the day. It was a busy day as I was still getting used to the new processes and tools, and I was surprised when I surfaced and discovered it was already 2pm. I went down and made lunch and brought it back upstairs so I could work while I was eating. Halfway through eating I started to not feel so great - nausea, dizzy, chills, not feeling good all over. I had to give up working and go lie down. After going to the bathroom several times during the rest of the afternoon and evening, things got worse.
My small intestine felt like it had completely seized up. Not the cramping you associate with an upset stomach or the flu. This was a complete seizing - no gurgling, no gas, nothing. It felt so inflamed that the compression that occurs by sitting up or bending over was intolerable. Even my shirt touching my abdomen or air movement in the room or the jostling from riding in a car was intolerable. For the next 10 days, putting anything through my system - liquid or solid - caused excruciating gut pain - like sandpaper going through my GI system - in addition to the chills, unrelenting nausea, headache, and just generally feeling dreadful.
A trip to the emergency room and a CT scan pronounced me completely healthy, just dehydrated. They tanked me up with a couple liters of IV fluids, told me to make an appointment with my family doctor, and sent me home. I saw my family doctor who referred me to a GI specialist. The quickest I could get in was 2 months out.
In the meantime, I discovered ginger tea cut the nausea a bit and calmed down the inflamed/seized feeling enough to be able to force 2 or 3 cups of tea down each day. After 10 days, I started to be able to drink more so the first order of business was to get fully hydrated. After 2 days, I felt like I could start drinking something with calories. It had been 12 days since my last calorie and I was pretty weak. Standing up became an adventure to see how many steps I could get in before I had to stop and bend over and wait for the dizziness to pass.
Over the next couple weeks, I was slowly able to get back on full liquids, then shakes, then soft foods, then normal diet. Within a few days of starting to eat normally, another attack happened and I was back at square one - struggling to stay hydrated for 10 days, then start getting calories again. And so it went from the beginning of November until mid February. By the end of December when I met with the GI specialist, I’d lost 25 pounds.
Meeting with the GI doc was an exercise in frustration. Once he found out that my mother had had Crohns, he completely stopped listening to anything else I had to say. That’s all he focused on. I tried to tell him that I know my body and I know Crohns and this was not Crohns but to no avail. And instead of wanting to find out what else it could possibly be, all he wanted to do was to try to suppress the symptoms with all kinds of drugs. I had no interest in just suppressing the symptoms. There was a reason they were there. We needed to figure out what was causing this. Given the alternative of waiting another 2 or 3 months to get in with another GI doctor, I submitted to his methods and agreed to a colonoscopy even though this was not about my colon. It was my small intestine. So we set up the appointment for the first available opening - 6 weeks in the future. He did take blood to test my inflammation markers and thyroid, all of which came back normal.
I got more and more annoyed about the appointment over the next couple weeks. I called him back and made an appointment where I insisted that if he’s going to put me under for a colonoscopy, that he also do an upper endoscopy to look at my small intestine where the actual problem area is. He resisted - the insurance company only pays him half for the second procedure if he does them both at once. I insisted and he finally agreed - but I had to pay for the procedure up front. I also requested that he checked for gut infections with a stool sample. He refused so I got my family doctor to order the test. It came back negative.
The procedure day approached, as did an impending snow storm. There was NO WAY I was going to go through the hell of the prep which was exponentially worse for me with the pain of putting anything through my system, and risk having it canceled because of a snow storm. I rescheduled it for 2 weeks later which took me to the end of February, four months in on this nightmare, and over 30 pounds down on a frame that wasn’t remotely overweight to begin with.
The colonoscopy, upper endoscopy, and the biopsies from them revealed nothing. I was perfectly healthy. There was nothing more he could do for me and he wanted to refer me to another GI doctor at the Hershey Medical Center. Lovely. Two more months of waiting to be seen and losing more weight.
But there was another issue. Through all of this, I’d been fighting with the insurance company. Because I’d just started a new job, had new insurance, and had had a lag in insurance prior to this job, the insurance company was kicking everything back as pre-existing condition. They refused to pay anything until I proved it wasn’t pre-existing. I submitted the forms they required listing any doctor appointments I’d had in the past year...which was four - two with my family doctor earlier in the year and the two since the onset of this GI issue. Every week I called the insurance company to follow up. Each time I’d get a different story - “Oh yes, we received the forms from Doctor X but haven’t received anything from Doctor Y”. I’d follow up with Doctor Y who said he’d submitted the forms. The next week I’d call in and be told the opposite, that they’d received Doctor Y’s forms but not Doctor X. Then the next week I’d be told that they received the doctors’ forms but not mine (which they had needed in order to have even sent out the forms to the doctors). And so it went. It was so incredibly frustrating and overwhelming and even more so when having to call in and wait on hold for an hour and then argue with the insurance people all while I was trying not to hurl. It was a new level of hell.
So, when the GI doctor told me that I would need to start over with a new GI doctor and wait another couple months to be seen AND I still had no idea whether the thousands of dollars I’d just spent for this doctor to give me no answers was coming out of my pocket, I knew that wasn’t an option. Something needed to be done. I didn’t have enough weight on me to be able to continue this way and no one else seemed concerned.
I kicked in my troubleshooting abilities. If there’s one thing in life that I excel at, it’s dissecting things into their smallest components to figure out how they work and how to fix them. It’s my super power and why I love working with computers and websites so much. Until this time, I’d been relying on and trusting the doctor to do that but he clearly didn’t have either the skill or interest or both. It was up to me. So I went with my reasoning powers.
Back in May, I’d crewed some friends in a trail race. Crewing consisted of hanging out at aid stations with our dogs, waiting for them to come through, and cheering them on. At one of the aid stations, I noticed the race staff pulling water directly from a spring without treating it. I assumed they’d tested the water to make sure it was safe and confidently filled up my water bottles in the spring. One week later I (and another person from our group) came down with diarrhea and some type of gut infection. I took a course of antibiotics and it went away and I continued life.
Fast forward to October when I decided to clear out a patch of ground with a weedwacker and rototiller for a flower garden on my property. Apparently I’d gotten into a bunch of some kind of poison during the work because the next day a horrendous case of poison ivy/oak/sumac broke out. Having had really bad cases of poison in the past, I headed to the doctor when I saw how fast it was spreading. He prescribed Prednisone and Benadryl. I started taking them and then flew off to the annual company retreat. The poison didn’t get better, it got worse. Within a few days, almost half my body was covered in the itchy rash. I gutted out the retreat and made it home and called my doctor who told me to wean off the Prednisone. He said it sounded like I’d developed an allergy to Prednisone. I did so over the next couple days. It was only a week after the quick wean off the Prednisone that the gut nightmare started. According to my logic and because all the major gut diseases had been ruled out, and nothing I’d read about the remaining gut issues that hadn’t been ruled out matched the symptoms I was experiencing, I suspected that the antibiotics I took for the gut infection back in May didn’t completely knock the bug out of my system but my immune system managed to keep it at bay until I took the Prednisone which suppressed my immune system. Then by weaning off of it too quickly, I didn’t allow my immune system to catch up and take back over. By that reasoning, this was still a result of an infection even if the GI doctor disagreed. I called my family doctor who got me an appointment with an Infectious Disease doctor.
While I was waiting to get in with the ID doctor, I researched and started taking natural antibiotics in the beginning of March - Grapefruit Seed Extract, Oil of Oregano, and Garlic. I also started following the Specific Carbohydrate Diet. While I didn’t feel that my issues were specifically food related - when I could eat, I was able to eat anything and when I couldn’t eat, it didn’t matter what food it was, I wasn’t able to eat anything. But I knew that I wasn’t getting the nutrition or calories I needed and I wanted to get the maximum calories and nutrition when I was able to eat. So, basically, I started a healthy, whole foods, no sugar, gluten-free diet with the Specific Carbohydrate Diet as my guide. I also saw a nutritionist who wasn’t much help and basically told me to just keep doing what I was doing. :-\
And I started getting better. My last attack was in early February. I didn’t have any attacks since I’d started the natural antibiotics. Yay! Except….