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Ulcerative Colitis
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Posted 4/26/2021 5:08 AM (GMT 0)
Hi,
This forum looks like it might be more helpful than others I've tried, so here goes:

I have UC that is usually very mild, pain-free and controllable with modified AIP diet, VSL3 and sups (which I had full approval of GI over) but due to a new health issue I was on permanent painkillers for a couple of weeks and barely able to get out of bed, slacked off on everything and wound up with a nasty little bloody flare. Two weeks of getting back on track had poop almost back to normal, twice a day and solid with a barely visible trace on the TP. Then I was put on new, very notorious for side effects meds for the other health issue, which I was reluctant to start until I was sure the flare was clear, but doctor nagged and I gave in. Surprise, three days in, massive nausea and then diarrhea and then blood. And pain.

I can't take steroids and I had a bad allergic reaction to mesalamine on my one and only shot at it, hence the protocol I've been following. So, question: are there any other rescue meds? (have access to GP, but not to GI for at least a month) Or anything non-med I can try to stop the bleeding? Looking for out-of-the-box suggestions.
Posted 4/26/2021 12:09 PM (GMT 0)
Hmmm - if you can't take steroids or mezalazine (mesalamine) I'm not sure what your options are unless you want to try other meds - azathioprine, biologics etc

My alternative suggestion is this, but it depends on where you live and what your personal views are. I've been able to get into remission rapidly with this on two occasions, once when I was about to have my bowel removed and had nothing to lose (well except my bowel!), but I'll say no more than that as I live in the UK where it isn't legal. If you search on the site you'll see other threads on the same topic.

https://www.healingwell.com/community/default.aspx?f=38&m=3951789
Posted 4/26/2021 12:14 PM (GMT 0)
If you were very unwell and in hospital I'd suggest cyclosporine as a rescue medication, which has got me into remission when IV steroids weren't working, but it's pretty strong stuff, and it doesn't sound like your UC is severe enough to jump to this option.
Posted 4/26/2021 1:24 PM (GMT 0)
I mean until you have tried a first line biologic like a remicade or entyvio you really aren’t considered a “rescue”. There is lots of good alternatives still for you!
Posted 4/26/2021 2:09 PM (GMT 0)
By 'rescue' I meant something to try to stop the blood now, as it's going to be a while before I can see the GI and I have no desire at all to go to emergency.
When scoped last year it was still mild proctitis (diagnosed 11 years ago) I've only had flares this bad with pain twice before, and they were both reactions to non-UC medications. Nicotine worked on the first but not on the second. I've had some luck in the past with l-glutamate, wheatgrass and qing dai, which I still have a bag of, but it gave me bad headaches, which wouldn't be great atm as I have a rare brain disease which is doing the same thing.
UCyousee - I would love to try it but illegal here too and not something I would have a clue how to get.
Posted 4/26/2021 4:33 PM (GMT 0)
The bleeding doesnt "stop" unless inflammation is treated.
q
Posted 4/28/2021 9:07 AM (GMT 0)
What are the least systemic steroid enemas?
Posted 4/28/2021 11:14 AM (GMT 0)
Hmm good question. Sorry I don't have the answer. I'm currently on pred foam enemas and Clipper (beclametasone diproprionate) tablets (and Humira, and mesalazine orally and rectally) and still flaring!
Posted 4/28/2021 2:56 PM (GMT 0)
Ugh, that sucks. Hope something works for you soon. Stupid disease.
Posted 4/28/2021 5:06 PM (GMT 0)
It isn’t a enema, but uceris foam I believe is the least systemic rectal. My GI years ago told me the medication representative to their practice shot off a canister in the office to demonstrate how far it would reach and the foam shot all the way across the room so by that description I would guess it travels as far as an enema. And don’t worry - I’ve used it and it doesn’t blow out your gut! 🤣. You can feel it expanding and traveling upwards tho (not uncomfortable— just weird).
Posted 4/28/2021 7:01 PM (GMT 0)
FlowersGal: Did it work for you? And how were the side effects?
Posted 4/28/2021 7:07 PM (GMT 0)
No side effects. If I was actively flaring the pressure was a little much and I couldn’t hold it. Otherwise I’ve always felt it was pretty soothing.
Posted 4/28/2021 7:38 PM (GMT 0)
I am very actively flaring! but it seems like something I might be able to talk my doctor into, thanks for the info smile
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