I learned I have UC and was prescribed Asacol. Standard of care approach. During the 5mos I was on Asacol, I developed such joint pain I had trouble dressing myself and I found I was so tired I could not function at work and just fell into bed when I got home. Life stopped even while all my UC symptoms kept going and GOING! I spoke to my doc repeatedly and he finally told me he could not treat me because I did not trust his guidance. (Up to that point, it was actually the medicine I didn't trust.) I weaned myself off the Asacol and within 2wks the joint pain resolved and within a month, my energy level was back up to almost normal. Problem was that by this point my symptoms had increased in severity. I tried turmeric (curcumin w/pepper), aloe juice, nopal water, l-glutamine and bromelain. All powders or liquids, as there was not time for capsules to break down in my system. I visited 4 more GI specialists who all wanted to put me back on Asacol. One even told me I was probably so bad I should just have surgery to remove the defective colon. I finally found a doc who considered my concerns re: the SEs associated with meds (I'm also Type 1 Diabetic.) and had experience treating autoimmune diseases without an immediate rush to Rx meds. Those Rx meds were kept in a hip pocket, in case we hit serious issues.
By the time I saw this new doc, I'd lost a great deal of weight, was malnourished and dehydrated. I was in really bad shape - needed help walking, couldn't drive, work or care for myself on my own. Help moved in with me for 3mos. In the first month, we focused on addressing the nourishment and dehydration issues with a medical food (UltraIflamX 360) and lots of water. In the 4th week, I was instructed to drink 100ml (most juice bars call this ~4 shots) of wheatgrass juice every day. I was told to fish oil with very slow increase up to 2000mg/day and VSL#3 to 3packets/day. I was told to stop the curcumin, nopal and the aloe and to keep taking the l-glutamine and bromelain.
Sounds hokey, I know, but within 2wks after starting the new supplements (wheatgrass, VSL#3 & fish oil), BM frequency decreased down from >25x/day to around 10x/day. After 1mos, I was not experiencing the severe urgency/diarrhea/bleeding I had been!!
In the second month, I had a calprotectin test done, CCC. diff. was negative and stool cultures were reviewed to identify the degree of imbalance and food sensitivity testing was done - specific to a level including whether my immune system lit with cooked vs. raw egg yolk. I've revamped my diet, eliminated those food items that spark my immune system. It has been DIFFICULT, but I've seen dramatic improvement in 3mos. My SED rate continues to drop and I'm now just 6 little points outside the normal range!! BMs are soft-solid, with minimal bleeding, which (uugh!) I can directly associate such with food ingredients that I now know light my immune system. BM frequency is down to 1x/day, without that horrible sense of urgency.
This approach is not for the faint of heart. I have experienced a rollercoaster ride and have learned the trend is more critical than the specific time-point. We'll continue to monitor, continue the supplements and will be very strict about
foods and food ingredients, ensuring my immune system relaxes as my body rebuilds healthy colonic tissues, heals ulcers and my digestive system balances. Then we'll begin testing reintroduction of food items - slowly. We'll determine which supplements remain must-haves, and which may be decreased in dose or eliminated altogether.
I get that most of you are following the SOC approach. I chose to take a different approach WITH THE GUIDANCE OF MY DOC because the SEs associated with SOC meds just are not acceptable to me, especially given I had 2 GI docs tell me these meds simply delay path to surgery. They expect their patients will need surgery! Aaargh!! Also, NOT acceptable to me. My doc continues testing to constantly evaluate progress, and this will likely continue for some time to come.
Good news is I'm beginning to live life again!! I'll be back at work in 1wk, the person who moved in to help me has returned home and I'm looking forward to having fun and joy and laughter in my life again.
This approach is not for everyone, but I'm completely ecstatic with the approach I chose and my super doc, who continues to help me take it.
SUGGEST YOU TRY:
Wheatgrass juice 100mL (~4shots) per day for at least 30days
Fish oil 2000mg/day (work up very slowly, It took me a month to get to this dose)
VSL#3 3 packets/day (work up very slowing 1/4 of a packet at a time. It took me 2.5mos to get to 3packets/day)
l-glutamine 8g powder in water/day (I take this at the same time I take the probiotic, which can be a bit tough on the system.)
Get tested to see what foods light-up your immune system, as an immune response anywhere in your body can inspire more immune activity in your gut.
Post Edited (NatureCalls) : 9/22/2015 2:33:48 PM (GMT-6)