Posted 4/22/2017 12:43 PM (GMT 0)
Hi everyone, I know this is an old thread, but I just wanted to post my experience with Qing Dai for anyone who may happen to come across it in their search for more information. I've had fairly severe pan colitis for 24 years now. It's put me in the hospital a number of times, once with a hematocrit level of 17 (normal 45-54) due to the bleeding. The primary drugs I've been prescribed for treatment over the years were Asacol/Lialda, Entocort/Budesonide, and prednisone. Generally I would have 3-4 severe flares a year which would take 1-2 months to subside, and rarely did I have what felt like no inflammation at all.. I could probably count on one hand the times I felt "normal" during that period.
During my early 20s, after ending up in the hospital, my GI prescribed me large doses of Prednisone which I'm convinced caused joint damage to my hip along with other side effects, and resulted in me refusing to take it again until recently.
about two years ago, I had a severe flare (urgency, 12-20 bm a day, diarhea that was mostly blood). That lasted nearly 4 months. MY GI doctor tried to force me onto the immuno modulator Humira. He was pretty beligerent about it too. I have other health conditions (Lymes), and didn't feel that this would be a good move. The side effects listed for immuno modulators just didn't seem worth it to me, and my sister who is a nurse said I shouldn't take an immuno suppressor as its only a downhill slide from there. As a compromise I did agree to try prednisone again, which did bring the flare under control for a bit. The next flare though, the doctor refused treatment, and ditched me as a patient for not taking the Humira. Around this time I discovered the SCD diet and made a go of that pretty rigorously. It did help, and I found a modicum of digestive normalcy for a bit, but then came last year.
It was an extremely stressful year. My father was diagnosed with cancer, and as he declined my system again flared significantly. My new GI prescribed me prednisone again which brought the flare under control, but a month and a half later it was back again. At this point, she started to press me a bit regarding immuno modulators, but was willing to respect my wishes and give me another dose of prednisone. It was 2 weeks before this appointment that I first read about Qing Dai. After finding several studies/articles through the NIH website, I decided to give it a try (what more harm could it do right?). I informed my doctor of my intent to self treat with Qing Dai along with the prednisone and lialda. Though skeptical, she was supportive after reading several studies I had printed off for her and doing some research of her own. found and ordered a powdered, pure qing dai I found on Amazon. My order arrived the day before I picked up my new prescription for prednisone and Lialda. Prednisone and Lialda alone doesn't always work for me. In the past I would generally get an effect from the prednisone for the first two weeks or so, but with declining results as it tapered off. Lialda.. I really don't know if it's effective at all for me really.
After the first week of treatment the frequency of bm decreased. After the second week I noticed the diarrhea had decreased and solidified significantly, and by the third week I saw no real traces of blood and BM were down to 1-2 a day. This was astounding to me, since I was used to a recovery period of months not weeks.
I continued to take the qing dai (at roughly 1-1.5gm a day) after the prednisone tapered off. Two months later I had my yearly colonoscopy. I was astounded by what I saw. There was very little trace of inflammation throughout my colon. It was the cleanest colonoscopy I have had in over 20 years. The docotor was impressed by what she saw, and concluded that I should keep doing what I was doing, and we would see how effective it is at the next colonoscopy. It has been 6 months since that checkup. For much of that time, my only medication has been the Qing Dai, as I did not renew the Lialda after running out. During that time I have not had a single sign of a flare, no diarrhea, no blood, and all my blood tests have come back normal. It is the first time I've felt truly normal in 20 years.
My system held up during the considerable stress, poor diet, and lack of sleep through my fathers final days. I stopped following SCD and couldn't resist eating all the garbage I haven't been able to eat since I was a kid including dairy, sugar, oatmeal, etc... In fact my biggest side effect has been weight gain (40lbs since Sept). Now I'm having to adjust my diet to fix that rather than colitis (not that I'm complaining). Other than that, I have had a couple bouts of pancreatitis (which I had before starting Qing Dai), and misc pains that I don't remember having before, though most of those started after the weight gain, so I'm going to attribute them to that. Anyway... that's my story with Qing Dai... Sorry for the long rambling diatribe... I'll let you know if anything changes...