Here I am, writing a blog for the first time. Why? A complete health meltdown in my mid-forties. While I have been struggling with my health for a while, my most recent and very significant health challenge is post-infectious Irritable Bowel Syndrome. I want to chronicle my story for anyone else who may be struggling with this or similar GI challenges. I have found it so helpful to read the experiences of others, I hope telling my story can be helpful to someone else. Right now, I have not found the solution, but I am learning why severe gut dysfunction happens and am not going to give up until I heal it.
Since early this year, I have suffered continuous diarrhea, fatigue, and brain fog. I’ve had nearly every GI test known to man – some more than once – and the GI doctor concluded that my food-poisoning earlier this year has resulted in post-infectious IBS. Here’s how it all started:
Late in 2013, after a very difficult year of extreme stress and minor to moderate health problems, my gut started acting up (diarrhea) shortly after I finished a 10-day course of antibiotics for an eye infection. I ate lots of yogurt, took Immodium when I needed it, and figured it would pass. It didn’t. In January I went to my family doctor’s physician’s assistant, who ordered a stool test. The results were normal. By the end of January, the diarrhea subsided, and I went on with my life. For about a week.
The first week of February, I went out to dinner at a chinese restaurant I had never been to. It wasn’t very good but my boyfriend and I were being hosted by his dad and stepmom, so I ate everything on my plate. The next morning I was violently ill with diarrhea. I felt better by the afternoon though and figured I had food poisoning from the dinner, and I’d recover. I continued having diarrhea in the days that followed, and started taking Immodium figuring it would clear up soon.
After a few weeks I noticed things weren’t improving. I was taking Immodium every few days to keep the diarrhea under control, but when it wore off I was right back to the same place. I modified my diet to eat simpler foods (BRAT diet) and made another appointment with my physician’s assistant in March. She said she had to refer me to a GI specialist as I had just had diarrhea in January. She refused to order any tests, and only suggested a food diary. So I made my GI appointment (waiting several weeks to get in) and was given a stool test in late March. It came back positive in April for Cryptosporidium. This is a microscopic parasite you get in the gut through food poisoning. Most people’s bodies will fight it off after a week or two. Mine apparently could not.
The GI doctor put me on a three-day course of Alinia, a new type of prescription antibiotic, and I had improvement while on the medication, but symptoms returned after I finished. I tried two more courses of the Alinia, but the symptoms returned each time. The GI doc ordered a colonoscopy to rule out Crohn’s and other inflammatory bowel diseases. The colonoscopy and blood test results were all normal (no gluten sensitivity detected). Another stool test at the end of May showed that I was no longer infected with Crypto. Yet there I was still struggling with diarrhea every day, multiple times a day. I started to really worry despite all the positive test results. What the heck was wrong with me? I’m not getting better despite no evidence of Crypto?? And why couldn’t my immune system kill the Crypto without help?
At this point, I had become quite tired. I told my boss about my illness, and she was very supportive. She had suffered a serious GI infection as a child, staying home 7 months eating a bland diet. She supported telework when I needed it, and was very understanding about my countless trips to the doctor. (There is nothing better than this kind of support at work when you are exhausted and sick. It makes all the difference!)
At this time, I was also seeing a functional medicine MD, Dr. H, because of my previous health issues. She had started me on adrenal medication which had helped my energy level and mental clarity, and started prescribing various supplements and enzymes to help my gut. I will get into more detail about what things I’ve tried and how they worked (or didn’t) for me in a later post.
The GI doctor (who I never saw again after the colonoscopy) had his physician’s assistant inform me of the PI-IBS diagnosis and put me on a cholesterol-reducing medication that had the side effect of being constipating. Again, I’ll share more details on specific treatments tried and abandoned later on, but this did not work for me. The GI doc also put me on VSL#3, a very potent and expensive OTC probiotic which I still take today. They had no other suggestions for me. Apparently Post Infectious-IBS is a diagnosis that modern medicine has no rejoinder for.
I research everything online – so that’s what I started doing. And in September I found the FODMAP diet out of Monash University in Australia. Thinking I had struck gold — 74% of IBS sufferers improve on this diet — I immediately began to follow it. I also stopped taking Immodium. How was I going to know if I was getting any better if I was on a drug that masked my symptoms? While I improved somewhat, it wasn’t a return to normal. Eliminating FODMAPs was stabilizing and gave me back a bit of normality. The bowel movements were still terrible, but I began to have fewer of them and they happened mostly in the morning or late in the day – versus the anytime-day-or-night party that had been going on. This made my work day easier, and gave me more confidence when I left the house. But, I was still having diarrhea three or more times a day. Not normal. Not healthy. Not okay.
So this brings me to where I am today. I am in the third week of a very restrictive program that uses an elimination diet and digestive support, among other things, to attempt to bring the digestive system back to normal. The program is from a book I purchased by Aglaee Jacob called Digestive Health with REAL Food. I plan to chronicle here my experience with this program and any further treatments or approaches I try to get back my life and health. I will tell you I have no connection to Ms. Jacob and no interest, financial or otherwise, in promoting her book. I have no idea if her program will help me either, although I hope and pray that it will.