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My 3 year remission is over

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Ulcerative Colitis
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Posted 6/6/2013 5:59 PM (GMT 0)

Hi everyone

It saddens me to say this, but after 3 wonderful years, my UC has once again reared its ugly head.

I pray that this flare wont last as long as the ones I usually suffer. I am still on the Vedolizumab clinical trial - and that is probably the reason that I have not moved into the bathroom yet. As I usually have to do that.

I am trying to figure out what caused this flare. There are 2 things that I did in the past few weeks which I believe may have caused my flare:

- Started taking a Chinese herbal med called Schisandra

- Had a Hepatitis A vaccination

Its so depressing to feel house bound again and seeing blood in the toilet.  Its painful when I have a BM and despite the bad urgency, I still have to strain. The BMs are formed, however. So, I believe the inflammation is around the rectum. 

I have started a steroid enema nightly and will hopefully move to a Salafalk foam enema next week.

Hope you are well, take care.

Posted 6/6/2013 6:05 PM (GMT 0)
Sorry to hear your remission is over. Hopefully the enemas take care of the inflammation quickly.

How have you tolerated vedolizumab? What were the circumstances behind 8 years of Steroids?
Posted 6/6/2013 7:06 PM (GMT 0)
What put you in remission in the first place? I'm a little confused as to why you started a Chinese Herb if you were already in remission, unless it was for something else. I doubt the vaccine is responsible but who knows for sure?
Posted 6/6/2013 8:34 PM (GMT 0)
Coulda been either.. The vax challenging immune response or schizandra, which is a powerful adaptogen. Hope you can pull out quick. I assume you stopped the schizandra?
Posted 6/6/2013 9:32 PM (GMT 0)
I'm sorry to hear that you're starting to flare up again.

Instead of switching to a herb medicine, you should probably just stay on what was working for you. That's just my opinion though, I'm too afraid to switch when I've found something that works because I don't want to screw up my colon again.
Posted 6/6/2013 9:41 PM (GMT 0)
The Hepatitis A vaccination IMO, how do you know what they injected in you?
Posted 6/6/2013 9:56 PM (GMT 0)
Don't beat yourself up; it could have been neither of those things that pushed you into a flare. If you didn't take the herb or get the vaccine, you would probably blame it on a food you ate that you hadn't eaten in years. I think we spend too much time figuring out what caused the flare, as if we have that much control, which doesn't bode well for overall health. Be good to yourself; UC is unpredictable.

Sue
Posted 6/6/2013 10:05 PM (GMT 0)
Hi everyone, thanks for your replies.

I tolerated Vedolizumab very well - it is what put me in remission after 8 miserable years of flaring. I was steroid dependent until I went onto vedolizumab.  I developed addisons disease after taking so much prednisolone and was, therefore, unable to come off it.

I started taking the schisandra as I read it cools down the body and I get hot at night, so I thought I would try it. 

It did actually help in this regard, but now, obviously, I am regretting it.  Yes, I have stopped taking it now.

The Hep A vaccination was Avaxim.

I should try to stop analysing the situation and just focus on getting better. But, it is difficult.  I am in the last chance saloon, there is nothing left for me med wise, should the vedolizumab fail me.  Which is very scary.

Take care

Posted 6/6/2013 10:26 PM (GMT 0)
According to this, Schisandra could reduce the efficacy of meds that are broken down by the liver. It sounds like it could have reduced the effect of your meds?
http://www.webmd.com/vitamins-supplements/ingredientmono-376-SCHISANDRA.aspx?activeIngredientId=376&activeIngredientName=SCHISANDRA


The place where I go for accupuncture (which is a great balancer on its own I find) always tried to force herbs on me, when I got the list of what herbs they wanted to give me and went through the interactions on webmd, I could see they were at risk of interacting with mesalazine and over stimulating my immune system, we need to be careful with Chinese herbs, some of them are very powerful and not to be mixed with Western meds

Hope the rectal meds knock this flare on the head for you
Posted 6/6/2013 10:29 PM (GMT 0)
Have also just seen on that page that "Improving liver function in patients with hepatitis. Schisandra fruit extracts reduce blood levels of an enzyme called glutamic-pyruvic transaminase (SGPT) in patients with hepatitis. SGPT level is a marker for liver damage. A higher SGPT level means more damage; a lower SGPT means less damage."

So possibly it was really confusing for your body and bad luck timing to have a hep vaccination while you were taking something that fights hep
Posted 6/6/2013 10:42 PM (GMT 0)
Perhaps you can get right back on the remission wagon again because you stopped what possibly caused your symptoms. I have had rotten luck with supplements myself and it usually takes me a week of downward progress to realize it and quit whatever.

Best wishes for a speedy recovery.
Your body did it once, it can do it again. It just wanted to tell you "stop that."
(I'm not disregarding commenters who said it might not be anything you did, just UC itself. I believe in trusting your instincts and the OP thinks it was one of these 2 things).
Posted 6/6/2013 10:42 PM (GMT 0)
I wouldn't beat yourself up thinking you did something to bring on the flare. There is no rhyme or reason to this disease.
Posted 8/28/2013 9:58 PM (GMT 0)
Hello barnsbury,

I came across your post looking for ones on Schisandra. Are you still taking it ? I was taking it for a while to help with my chronic fatigue. While it helped me some in that area, I started getting acid reflux more often and stomach upset. So, I wonder if it does upset the GI system ?
Posted 8/29/2013 10:05 AM (GMT 0)
Hi snowbell

I stopped taking the schisandra quite a while ago, due to my flare.

My flare has gone but I am still not sure if it was caused by the schisandra, so I haven't dared go near it again

I would be very cautious If I were you

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