The Good News
For all the ways that I am doing better since leaving our moldy home, see this post. Many things have improved. Also, I have not been diagnosed with any new conditions (except for CIRS: Chronic Inflammatory Response Syndrome, due to the mold exposure) since leaving our home. In the last two years that we lived there, I was diagnosed with a new condition every three months, on average. But even with all of this good news, I am still healing ulcerative colitis.
The Real Story
Many health bloggers like to write about all the natural things they have done to heal their bodies. They like to share their journey once it has become this amazing, inspiring story to share. I’m choosing to make a vulnerable move right now. I’m choosing to share my story in the midst of the journey, while things are still winding and the destination is out of reach.
How it Began
While many things have improved for me, I am still healing ulcerative colitis. It was first diagnosed in September of 2016. At diagnosis, my symptoms were mild enough that, aside from the help of one medication, I was able to control my inflammation with proper food choices. That all changed last March. Back then, I had been dealing with a candida overgrowth for more than a year. No treatment worked, herbal or pharmaceutical. (Now I know that it’s nearly impossible to get rid of candida while living in mold.) As a last ditch effort, my doctor put me on thirty days of Fluconazole, a pharmaceutical anti-fungal. She figured we just hadn’t hit it hard enough.
Well, by day 10, I was bleeding profusely from my large intestine. I now believe that by killing candida, we upset the balance of bacteria in my gut. The ensuing diarrhea increased to about thirty times a day. Having had C-diff the year before, we all thought it was a C-diff relapse, but the tests came back negative. When I reached a point of severe dehydration, I was admitted to the hospital. And that was the beginning of my 11 days there. The pain was agonizing. For much of the time there, I only passed blood, even on IV steroids.
Here and Now
Fast forward eight months, to now. I have been on oral prednisone since the hospital stay. Four times I have tried to taper off of the prednisone, only to be met with a cramping, bleeding colon. Before the pain and blood return, I experience extreme fatigue, like the kind of fatigue that makes you unable to get out of bed…unable to accomplish your daily tasks. I now know that the fatigue is the first warning sign that I’m about to start bleeding again.
So here lies the problem. While on prednisone, I appear to be a normal human being. I have energy. I’m not in pain. I’m not bleeding. I can function and do all the things I want to do. The problem is that you can not stay on prednisone long term. I’ve already been on it longer than I should have been. Long term prednisone use can lead to osteoporosis, cataracts, and thinning skin. It also affects the way the body metabolizes sugar, leading to an increased risk of type 2 diabetes. I can get down to 10 mg with no problem. A few times, I have even gotten as low as 7.5 mg with little issue. But below that, I flare. And then in this terrible cycle, to stop the flare, my doctor throws me back up to 20 or 25 mg and I have to start the taper all over again.
An Ultimatum
Well, at a recent doctor appointment, my GI said that he is no longer willing to prescribe prednisone. He is worried, rightly so, about the long term effect it will have on my body. He has said that this is my last chance to taper down. Knowing that as of yet, I have not been successful with the taper, I knew that I needed an intervention…something to help me bridge the gap from 7.5 mg to zero. I need help healing ulcerative colitis.
My gastroenterologist, who is western trained, is pushing for me to begin a biologic drug, such as Entyvio. A biologic drug like Entyvio works by targeting the immune system, specifically a protein known as TNF (tumor necrosis factor). Entyvio blocks TNF from it’s messenger duties in the immune system. While this can work to lessen inflammation, it also puts the immune system at risk. When you turn off the emergency messengers, they are not then able to rally an adequate attack in the case of infectious disease, for example. Biologics come with big side effects, such as serious infections, PML (brain infection), liver failure, reduced ability to form new blood cells, and cancer.
In Search of Alternative Treatment
So given this knowledge, I am trying everything I can to avoid biologic use. I realize that in certain circumstances, biologics save lives. I may reach a point where I have no other option, but I don’t believe I am there yet. Aside from high dose curcumin, omega 3s, bromelain, vitamin D, LDN (Low Dose Naltrexone), CBD oil, and SBI Powder (Serum Derived Bovine Immunoglobulin), last Saturday, I also began an elemental diet (through my integrative physician and nutritionist) as a method of intervention.
An elemental diet is a liquid diet of “pre-digested” amino acids, vitamins, and minerals. It is designed to be absorbed in the top three feet of the small intestine, thus giving the rest of the intestinal tract a break from the hard work of digestion. The theory is that rest equals time to heal. See this case study for evidence. I am currently on day six of this twenty one day liquid diet, using Integrative Therapeutics Physician’s Formula Elemental Diet. So far, things seem to be going well. I will update soon with a journal of sorts to document my (hopeful) healing of ulcerative colitis.
Why I Share
Overall, with all of this transparency, I am hoping that I can be a source of information and solidarity for others walking this journey. I am also hoping that friends who read this will keep me in prayer as I make drastic, difficult changes in an effort to heal. My hope is that my success story will read like this documented case study one day. Let’s pray for “reversal of ulcerative colitis in THIS HLADR/DQ genetically susceptible individual with biotin exposure.”
