The being too underweight to receive drugs sounds odd. Like couple of posts above I'm seriously underweight - 5ft 11 and 119lbs (BMI 16.5) but that has never been a factor. It sounds like you've had some dubious medical advice/treatment and I can appreciate your cynicism ... But I strongly doubt it's a 'Canada' wide problem. Good and bad docs everywhere ... Find one that will listen and work with you as to what you want. Sorry but I wouldn't have faith in anyone who 'took one look at me' and decided on medical treatment. We all know how misleading the external view of an IBD patient can be.
At the time my CRP was through the roof, so that was also a factor. I think "normal" CRP is 40 and under, mine was 70. The GIs here tend to call for surgery based on that number alone. But at the time I was also 130lbs (and I'm 6'4 192cm tall), had enormous thrombosed hemorrhoids that prevented me from sitting properly, and I was in a wheelchair. He said to me that his primary reason for pulling remicade was that he didn't want me to get an infection... but the risk of infection is always there when you use an immune-suppressant, so I don't get it. Maybe he just looked at me and decided he didn't want to be liable for my potential death, I dunno. But like I said, surgery would be a big deal too... my tissues were so atrophied that I don't even know how my body would heal from being cut
BUT... 4 days before leaving the hospital I had an MRI done on my bowels and there was no indication of toxic megacolon, bowel perforation, diverticulitis, or any kind of complication that would call for surgery. I was just really underweight from lying in bed for over a month, and the antibiotics they gave me caused diarrhea so bad that I developed those hemorrhoids.
I think you're right... the GI was dubious. I kept trying to argue with him about
the facts of my case but he wouldn't hear it. His exact words, "It doesn't matter what brought you to this point, you need surgery and I won't prescribe anything else."
I've read your other posts with interest, and if you're currently trying the non-pharma route, I believe the first step should be to concentrate on dysbiosis regardless of the UC cause. Things like Vitamin U or Gastrazyme (cabbage juice in pill form), pure ethically sourced colostrum in combo with l-glutamine first thing in the morning an hour before you eat. Second step: probiotics like VSL3 and bacillus coagulans. Sauerkraut non-vinegar based. No sugar or fruits (I only eat pineapple because it works for me). Great you're already taking propolis. In my case UC (developed to chronic) is caused by yeast infection (after years of antibiotics) and this protocol has led me to living a usually carefree life. I don't know your story but I hope you find your own way of kicking UC to the curb.
I don't prefer commercial probiotics. I've taken VSL and it doesn't do much. I use homemade ferments like milk and water kefir, kombucha, and sauerkraut. They have much higher numbers of the good stuff, in the trillions. Interesting you mention bacillus coagulans... I bought some of that when my flare first began. At *that* time, it did nothing, but maybe it would help me now. How do you recommend taking it? I've read that its spore coating lets it survive stomach acid. I wonder if there'd be any conflict taking it with my other ferments.
I have a 5L crock of cabbage fermenting as we speak. I can't tolerate the cabbage itself but the kraut juice tends to help with digestion. I have to be careful though because it causes a lot of painful gas. I tried juicing fresh cabbage and the results were... explosive.
The SCD approach to no sugar does not work for me. I can't live without it, mind you I am highly selective in my sugar choices. Nothing refined. Lots of raw, unpasteurized honey. Molasses sometimes (mixed with things). I do ingest carbs in the form of brown rice pasta, but not copiously. I also consume fruit smoothies. In the beginning when things were at their worst, sugars were bad news. Now thanks to the fermented foods it doesn't seem to be a huge problem in moderation. But... I am still
open to using sugars cautiously.
Thanks for the wonderful info, especially about
the bromelain. When my BMs reduce in number I'll try the pineapple juice for the scarring. How would you take it for that purchase? I can't imagine using the juice rectally, ouch!
Left sided UC Dx in Feb 2015
Meds: 20mg prednisone, tapering
Failed: 5-ASAs, prednisone, remicade
Modified GAPS diet
Home made ferments (milk and water kefir, sauerkraut, kombucha)
Grape seed extract, colloidal silver, bee propolis / royal jelly
Vitamins: topical magnesium oil, daily B12 injections
Post Edited (Chiron) : 6/25/2015 1:31:45 PM (GMT-6)