I have been wanting to start writing this post for months, but new things kept happening at my doctor’s office. Plus, who wants to share details about their BM’s over the internet? It is embarrassing, but so many people have these issues. We NEED to talk about them. I’ve been trying to get my digestive health issues under control for YEARS. Thank goodness, I’m seeing a new doctor next week. I’m hoping to share my healing journey with you in the future.
After I moved to Tucson in 2006, my IBS-C issues began. I’ve always had a bloated stomach problem, although it was not a daily thing growing up. I mentioned the chronic constipation to my PCM then who prescribed me colace. She told me I wasn’t getting enough fiber and water, so I made sure to bump that up in addition to the colace (even though my BM’s were more like IBS-D). I’ve never been one to take more pills than I really need (besides birth control), but I took them anyway. After taking them for 1 week and feeling worse than before I started taking them, I stopped. I remember being so constipated after 9 days at one time, and being so desperate that I ate an entire bag of prunes and drank a big glass of coffee, and NOTHING happened. The acne also started during this time. I had never broken out or had cystic acne before this so dealing with acne for the first time at 23 years old was rough! I think I must have tried at least 10 different skincare lines that year in an attempt to fix the raging pimples all over my face.
The hubs and I moved to Germany the very beginning of 2008 which is where I saw my first GI doc for my issues. After he performed a colonoscopy (and literally tested me for NOTHING else), he told me nothing was wrong with me besides a few internal hemorrhoids that were “normal” from my constipation. He also sent me to a nutritionist to have my diet analyzed for fiber content. The nutritionist said that I was getting more than enough fiber, and he didn’t understand why I was having problems. Both the nutritionist and the GI doc said that it must be stress. I remember sitting in my GI doc’s office literally crying my eyes out while he told me nothing was wrong with me.
After that experience, I started researching online of what I could do to help myself. I went GF for a week and came out of this mental fog that I had no idea that I had even been in. My headaches and migraines went away for the most part. My BM’s seemed more frequent at first. Slowly but surely the constipation/bloating/ stomach pain reared its ugly head again, and every time I blamed cross-contamination even though I was very meticulous about it. The stomach pain got so bad sometimes that I would just curl up in a ball in bed, crying, trembling, and trying to breathe the pain out. One night it was particularly bad, and my husband was pleading with me to let him take me to the emergency room. I declined. What were they going to do? Give me more colace?
We moved to Spokane in 2010 where I intentionally didn’t mention my stomach issues that were taking over my life because I didn’t need a doctor to tell me it was “just stress.” I did switch to Yasmin b/c it is the only (at least what I’ve been told) birth control on the market that can treat hormonal related acne. It cleared up my acne within a month.
In 2012 and 2013, I started doing more and more research about diet and anything else that could be causing my IBS symptoms. I even went paleo for 6 months taking all kinds of supplements to heal my gut after I moved to San Antonio last year. The bloating went down just a little, the constipation issues got better, then went back to the same 5-9 day transit time, my energy went up just a little, and I didn’t get colds or the flu during that time.
However, after all of this I was still fatigued more than I thought I should be, and the thought of turning 30 and feeling like I was 80 was unacceptable. I spent every minute of free time researching IBS cures and causes. I had also developed anxiety about going out to eat at a restaurant or even a friend’s BBQ. Even if I ate 100% Paleo, I would still get bloated, and somedays doubled over in teeth clenching pain. I put my anxiety aside about seeing another doctor for my issues and made an appointment. This was taking over my life, and I couldn’t handle it anymore!!
With my scholarly articles and newfound digestive knowledge in tow, I went to see my PCM with my list of health issues. She proceeded to me it wasn’t possible that I could have SIBO, it was basically my fault that I didn’t have sex drive (yes folks, she said that!), and there was nothing wrong with my thyroid or any other hormones (even though I had hormonal related cystic acne…hmm). She also said that I may never find a cure for my digestive issues, and I should learn to “deal with it.” Nice, huh? At least when she looked over my last GI doc’s notes (from Germany), she recognized that he could have tested me for more issues instead of only doing a colonoscopy. Thankfully, she still referred me to a GI doc.
The first time I saw my new GI doc, she spent an hour with me. She told me that I wasn’t crazy. She believed me that I was having these issues. It felt so good to talk to a doctor who was willing to help me!! She assured me that she had about 30 different tests/procedures that we could do to figure out my issues. She said that if I continued to see her, I would have to “play by her game.” She even appeased me with hydrogen/methane breath tests for SIBO and fructose malabsorption which both came back positive. Despite the fact that I seemed to know more about these tests than she did, I was still on board with her treatment at least in the beginning. I know that it is not possible for a doctor to know everything! However, she never addressed these tests besides giving me riflaximin and neomycin (10 day supply) for the SIBO. While I was taking the antibiotics for the SIBO, I bought The New IBS Solution and discovered that SIBO is a symptom of a range of other issues. When I asked her about what we would do if I got SIBO again (since I had read that it is often reoccurring if you don’t address the root cause), she said she would just prescribe more antibiotics.
Her “game” included keeping a “poop journal” for 1 week while taking colace and miralax. I felt incredibly ill that week with no poops to write about. My stomach was so bloated and painful that I didn’t even leave the house that week. She also insisted that I start eating “normally.” She insisted that I should eat gluten because my celiac test came back negative, and she was worried that I would miss out on nutrients and fiber. After being gluten free for 3 years, I ate gluten approximately 7 times over the course of a couple months. Every single time I ate it, the very next day I had a horrible migraine headache. I experienced brain fog, bloating, and stomach pain. After experiencing my symptoms of a gluten intolerance on several occasions, I decided against eating anymore gluten. I had also added back all the grains and legumes that I had cut out when I went paleo. I felt worse than our first visit together. Those things are out of my diet now as well.
Her “game” also meant seeing another doctor for an anorectal manometry and a defecography. She said that I may have an issue where my internal sphincter tightens while my external sphincter relaxes when I try to poop. I’ve never had an issue actually pooping when I need to go. This clearly wasn’t the issue, but I’m not a doctor so I went to see the specialty doctor for the initial exam regarding this a few weeks ago. He performed a rectal exam and an anal sigmoidoscopy. It was very painful (this is NOT normal), gave me nausea, and made my anxiety worse regarding seeing any doctor for my issues. The specialty doc said, “You don’t really seem like a candidate for this procedure, but if this is what your GI doc wants, then we will do it.” After getting home that day and experiencing bleeding from my rectum, I was not happy. I had a week until my actual procedures.
During that week, not only was I sore, I started thinking… I am not comfortable with this. My GI doctor has not talked to me about diet at all. I could have a sensitivity to a random food, and not even know it. She didn’t even address my positive fructose malabsorption test. If the specialty doctor who performs these anal tests all the time doesn’t think I need this somewhat invasive (to me, at least) procedure, why in the hell am I going to get it???? After that, I decided that I would not go forward with the other rectal procedures. In my mind, my GI doc was going through of a list of random tests to try that her computer suggested with no real thought or reason. Logically, I’m sure there was some thought in there. I’m not mad at her, and I know she is a really intelligent person. She truly wanted to help me, but it just wasn’t working for me. It was apparent to me that I needed to try another route.
And you know what? I don’t really blame any of them. Relating gut health to the rest of the body is a new thing. If I didn’t take immunology this past semester, I wouldn’t have questioned my treatment so much (delayed IgG sensitivities, etc.). It is impossible to keep up on all the new data as a doctor especially if you are overworked seeing a million patients a day. I’m interested in treating the cause, and not just the symptoms. For some reason conventional medicine hasn’t quite caught on yet to that mindset, at least in my experience. I’m interested in science-based medicine, and at the same time, I want a more holistic approach. It is worth a try. I’m kinda sick of military medicine. I’m not saying all military doctors are horrible. I just know that I’m not crazy, and it isn’t “just stress.”
I made an appointment to see a new doctor in Austin about an hour and fifteen minutes from my house next week. She is an MD, but she practices functional medicine. She will be running all sorts of urine, blood, and stool tests on me, and she knows her stuff! I’ve watched all of her youtube videos describing the tests, listened to all of her podcasts, and read most of her blog entries. According to her past clients, she is often the “end of the road” for most of them. I guess I wanted to do my research on her before I tried another doctor. I’m trying not to get too excited because everything that I have tried before hasn’t really panned out the way I wanted it to, but I can’t help it! I want to be optimistic that this will not control my life anymore.
There was a another point to me sharing my story with you besides to just share my journey. Be your own patient advocate. If you aren’t comfortable with something, don’t do it!!!!! If I seriously would have felt in my heart that I needed to have those procedures done, I would have, BUT there are such people as “Scope Happy” docs. I’ve heard other doctors talk about them. Get a second opinion. This is your health. I’ve been discouraged over the years, but I keep trying new things. I’m annoyingly persistent which I think comes in handy sometimes. 😉 I hope by me sharing my story with you, you might find some inspiration if you have health issues that need to be adequately addressed. 😉
Current updates on my IBS Story: