Hearing about other people who are struggling with similar problems is always pretty difficult. You don't want to overwhelm people with medical suggestions because, well, I know I tend to shut down after a while when people do that, especially if it's something I've tried already. Medical treatment is a little like religion - people have to have faith in their treatment, and they protect it, sometimes blindly. I've been guilty of that and tend to resist advice initially, but ultimately consider most suggestions because you might stumble onto something that works. Knowing this, I still have a hard time biting my tongue. Why? I don't want them to go through all of the trials and errors I did.
Because this is my blog and I can pick my topics, I'll write to anyone who will read about what has and has not worked for me. In the interest of full disclosure, I still am struggling to hit colon perfect health. I still get gas and bloating and am having a heck of a time getting rid of candida and c. difficile. We'll get to that in a bit...
What has worked
Back in 2004, I was running to the bathroom to go number 2 upwards of 20 times a day. During a 20 minute commute to work, I would have to stop up to 5 times at different business buildings and restaurants to run in and use their bathroom. Embarrassing! Colitis wasn't my only problem. As time went on, interstitial cystitis, lupus, and other issues arose.
My first steps were to cut out dairy, soy, and gluten. Unfortunately, I didn't know I was allergic to many more things and didn't cut them all out at once, so I didn't think it was working! I read online about different supplements, started taking l-glutamine (helps), slippery elm (might have helped), marshmallow root (eh), and probiotics. I went to a naturopath and had an IGG and IGE blood test done for allergies. This helped me cut out a lot of foods and feel quite a bit better, but I was still having problems. I started researching my supplements and the probiotics I was taking contained soy and dairy, which explained why they weren't helping. I switched brands and started paying attention to how I was feeling immediately after I had meals.
I cut out more foods on my own and went to an Environmental Medical Doctor who did provocative skin testing. There were tons of foods that were not picked up by the blood test that showed up with skin testing...and the manifestations were weird! I was injected with corn (I wasn't told what was in the shot during testing) and I broke out in a rash all over. Guess what my staple food was at the time?
One of my major issues at this time was spontaneous weight loss and muscle wasting. I also was having muscle cramps at night, nerve issues (numb limbs, tingling, etc.). I started taking magnesium glycinate (up to 600 mg before bed) and the muscle cramps stopped. I started taking b12 shots and my energy levels went up and the nerve issues dissipated. I ate a ton of congi (rice porridge) with lamb (fattiest meat I could find), yams, parsnips, garlic, and ginger. Nothing else would settle well on my stomach, so I would have this several times a day. Oddly, I also developed a mild allergy to rice and was a complete loss as to what to eat.
I started allergy shots and low dose naltrexone. I also started Nystatin. I didn't notice much help from the low dose naltrexone other than an increase in energy - everything still hurt. It turns out that naltrexone kind of kick started my immune system and it was actually recognizing the candida I had been struggling with for a while. Arthritis pain went up and the Nystatin caused herx die-off reactions. After a couple months (yes, it took a long time), the naltrexone seemed to start working and I could work and function well.
I'm fairly convinced that if I just had started raw vegan during the height of my stomach issues, it probably would not have gone over well. I started on a whole food diet without any refined sugars, preservatives, or items I was allergic to. Because of the number of allergies, I cooked all of my meals from scratch. As time went on, I noticed that I didn't feel great after meals with a lot of meat - and I ate a lot of meat because I thought that was the only way to get protein and calories from fat since I had a hard time with grains and soy. Eventually, my sister-in-law sent me my first raw book and I was excited to see that sustaining yourself was entirely possible.
- magnesium glycinate (up to 600 mg per night)
- b12 injections 2x a week
- low dose naltrexone
- daily multiple vitamin
- pharmax or Klaire Labs probiotics
- Thorne Platizyme
- vitamin D
- vitamin A
- DGL (I actually took licorice - low blood pressure)
- diet changes leading up to raw veganism
- SCD diet
- Animal proteins
- protein powders (most of them have corn, soy, whey)
- traditional treatment
- Acupuncture (helped)
- Massage (helped)
- Kombucha, miso, sauerkraut
My health isn't perfect, but I work and have energy to do pretty normal stuff. I've even picked up guitar and am taking an art class. That may not sound like a big deal, but I work really long hours and am happy that I still have energy. That energy has been dipping a little. I got frustrated after months of Nystatin again. I went on Gabriel Cousen's phase I diet, and it seemed a little too strict - I detoxed quickly and didn't handle it well. I started pulsing, which helps. I can go a few days on phase one now. I've been eating every fermented food I can find. I'm going to try to go about this a bit more naturally, but realize that candida and c. difficile, and my obvious predisposition to contracting intestinal bugs is just a symptom of a crappy immune system. I'm going to talk to my doctor next week about testing for heavy metals. There has to be more at work here - and if there is I'd like to look at zeolites. There is also a quick detox with them...which the doctor will have to watch. We'll talk about it - he's a great doctor and may have other ideas. Symptoms right now aren't diarrhea (thank God), but I get a sharp pain in the descending colon before I have to go. My energy is sapped a little, but not bad. I get some bloating.
The next adventure for me is making my own fermented foods and continue the search for water kefir that isn't soy or milk derived....