I know this is going to sound odd but I do aloe vera enemas at night during a really bad flare. I find the aloe very soothing and it helps calm down the inflammation. In fact, when I miss an enema....bad the next day. It's not a cure by any means but it does help me a bit. Your colon is just one big wound now. Aloe is the best thing to sooth that type of wound. I did ok this with my GI first. He looked at me like I was crazy but said it couldn't hurt.
Aloe is definitely on my radar. I was taking it orally during the worst part of the flare and it got me through some tough times. My home is filled with aloes, some of them are huge. It shouldn't be a problem to experiment. How do you prepare yours, or do you buy aloe juice? For an enema, I was told I should take the inner pulp (the clear stuff) and run it through a blender, then use an enema bulb. It could be a good base for mixing in other medicines too.
to try making cocoa butter boluses with goldenseal mixed in.
Chiron, I can understand your frustration that several meds did not help you and had side effects but that doesn't mean that all meds won't help you. It's very possible Cortifoam might help you when Remicade did not. That's actually comparing apples to tires.
There really is no such thing as your body has a different metabolism so therefore no meds will work on you. Many here have found no alternatives worked on them. There's no guarantees there either.
I visited my MD yesterday and she does not feel I'm a candidate for cortifoam because of my history with steroids. All they do is suppress symptoms, and as soon as I stop the flare comes back worse than before.
I never said "no meds will work on me", I said that the meds for UC, so far, have not worked on me. What you say about
metabolism is false. Google the CYP450 group of liver enzymes. Everything we take goes through the liver, and based on your genetics it will affect how you process things. It's not alternative medicine, it's modern medical science. Some people drink a cup of coffee and it affects them all day (slow metabolizers). Others, like me, are rapid metabolizers... I can drink 6 cups of coffee and it does nothing, because I have 10 copies of CYP3A4, the enzyme pathway caffeine travels through. Unfortunately dental freezing also goes through the same pathway, so dental freezing barely works on me. They can give me 5 times the standard dose (which is the legal limit) and I still feel the drill.
I know this about
my genetics because I've had genetic testing, due to my weird reactions to drugs, herbs, and certain food products. Anyone can get this testing. I highly recommend it.
You appear to believe you are different and no Meds will work for you ... and who am I, an internet stranger to question that ... you may well be. However sometimes is it not necessary to 'park' beliefs and try and be open minded and give things a try. As Gary says, different things work for different people.
Writing off Meds if one is anti modern medicine is perfectly acceptable (a line many of us would have loved to hold - so good luck to you) ... But this a world apart from writing off Meds as not working. After such an incredibly short time since diagnosis (4 months) this latter reasoning seems (to me) somewhat premature.
A lot of people on this forum keep feeding me the narrative that I'm closed minded and anti-modern medicine when I'm not. You guys are making false and hurtful assumptions about
me. Just because I talk about
herbal medicine a lot doesn't mean I'm anti-anything. I'm an herbalist, I spent 6 years in school and apprenticing in herbalism, it's my life and passion. That's why I talk about
When I had my fulminating UC flare back in March, the first thing I did was go to the hospital. They sent me home twice with morphine and said "follow up with your GI". It was only when I was literally dying two weeks later that a different hospital took me by ambulance. You think I was sitting at home tinkering with herbal medicine and foods at that point? Hell no. I spent an entire month in the hospital, only doing modern medicine. So don't lecture me about
being closed minded, okay? I've been through hell and NO SYSTEM of medicine has 'fixed' this for me. My approach now is multi-modal, and it's the only thing working for me.
I won't bother explaining my harsh reactions to medications again. You can do a forum search and look at previous posts, especially my very first one which tells the full story. I disagree that meds that didn't work before might work now. Adverse reactions to drugs don't tend to change just because the status of the condition changes. It's not just me saying la-dee-da and avoiding drugs.
I'm not a candidate for other biologics. I don't know how it works where you are but in Canada only remicade is indicated for UC. I can't take humira or the others. My GI said that there have been cases of people with UC dying from humira, so they only give it to people with Crohn's now. Whether that's true or not, I don't know, but it's what I was told. He was about
to give me imuran with my third dose of remicade, but then the hospital gave me IV antibiotics without medical evidence of an infection, it caused allergic diarrhea, and my GI assumed that meant remicade wasn't working. So I got cut off.
I'm at where I'm at because modern medicine completely failed me, and abandoned me. All my GI will offer me now is surgery, and no other drugs. Hell no. I am not getting a colostomy when it's my first flare and there aren't any complications. I have a new MD now who is awesome, maybe she can come up with some ideas. She thinks it's insane how much surgery was pushed at me, when I am gradually recovering.
Post Edited (Chiron) : 6/24/2015 11:38:27 AM (GMT-6)