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Rectal bleeding driving me nuts

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Ulcerative Colitis
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Posted 2/23/2018 7:08 AM (GMT 0)
My flare is mostly under control but every BM has blood streaked stool and it's driving me crazy. Nothing I do stops it. I've tried all the rectal meds. My GI doc can only offer harsh immune suppression which I don't want for such a minor problem. I think most of the blood is coming from my sigmoid because that's where I still feel pain right before a bowel movement. I get urgency but still have rectal control, unlike my last flare when my rectum itself was inflamed and I was incontinent.

I can live with the bleeding but I still go to the bathroom 4-5 times a day so the bleeding really adds up. Every couple of months I need an iron IV. Also having inflammation smouldering like this can't be good for my bowel.

Surgery has been discussed but because this isn't life or death it's not ideal. I also don't want it.

Been trying to look at diet but aside from cutting out some sugar that's still in my life I'm already eating cleanly.

Any ideas? Even natural medicine ones? I heard vitamin E enemas can help.
Posted 2/23/2018 7:10 AM (GMT 0)
Forgot to mention I'm on Enytvio also. I can't tell if it works or not. My condition still goes up and down even right after I get an Entyvio dose.
Posted 2/23/2018 12:56 PM (GMT 0)
what exactly does your "eating cleanly" look like ? paleo, gaps, scd, ?
Posted 2/23/2018 1:08 PM (GMT 0)
How long have you been on entyvio? It can take a while to take full effect
Posted 2/23/2018 1:10 PM (GMT 0)
If you are having 4-5 bms a day with some urgency and blood then you still have some moderate inflammation going on, and are flaring moderately. So, it isn't a trifle but rather something that needs a lot more intervention.

Are you only on entyvio?

I'd recommend combination-therapy: Entyvio, plus oral mesalamine (pentasa/asacol), plus rectal-route mesalamine (pentasa/salofalk/rowasa retention enemas). If that doesn't work then add in immunomodulators (like azathioprine/imuran or 6MP). It can take a lot to get you into a remission, and then you sustain a remission with less.
Posted 2/24/2018 5:43 AM (GMT 0)
ipoop I tried the rectal meds but they don't work. I've never tried azathioprine or 6MP. I wonder why my GI doc never recommended them?

I've been on Entyvio for over a year.

My diet is paleo for the most part, but not exactly. I tried the other diets and they didn't work.
Posted 2/26/2018 6:30 PM (GMT 0)
Is there a kind of oral steroid I could take that does not get absorbed into the blood but helps the bowel?
Posted 2/26/2018 6:37 PM (GMT 0)
If you want an oral steroid with minimal systematic absorption then you need something like Uceris (also know as Entocort EC/Clipper in other countries). Essentially, it has a delayed-release coating (much like asacol/lialda/apriso), so the medication is released topically in only the large intestine. That has a 90% topical effect and only 10% blood absorption. It's a budesonide steroid, which are known for less side effects than prednisone is.

Steroid enemas/foams/suppositories are also 90% topical and 10% systematic. If you have left-side only inflammation then these work well.

Only footnote is that these topical steroids are best for mild inflammation. If you have severe inflammation than prednisone is the only viable option to treat it.
Posted 2/26/2018 10:50 PM (GMT 0)
My rectal bleeding stopped when I took about 2g/day of Qing Dai (Indigo Naturalis).
Posted 2/26/2018 11:00 PM (GMT 0)
Thanks Dawgg that's good to know. When I googled Qing Dai and IBD I got isatis cooling. Is that the same thing?

iPoop... so Entocort is taken orally but then breaks open in the large intestine? I would not call my inflammation severe right now, but it's in that last 10-20% that's really tough to get rid of. I'm just really worried that all my prednisone use is killing my adrenals so I'd like to transition to something non-systemic.
Posted 2/27/2018 11:53 AM (GMT 0)

www.ncbi.nlm.nih.gov said...
Budesonide (Entocort EC Capsules) is an oral corticosteroid with a high degree of topical activity and low systemic bioavailability (approximately 11%). The budesonide capsule has been formulated to dissolve in a pH dependent manner, delivering most of the drug to the ileum and ascending colon, areas of the intestine most commonly affected by Crohn's disease.


/www.ncbi.nlm.nih.gov/m/pubmed/12381231/

Sounds like it is ileum (junction of small and large intestine) for it's beginning release point and most is released right-side. If you have predominately left-side inflammation then go for steroid enemas.
Posted 3/1/2018 12:52 AM (GMT 0)
Chiron - Yes, I think that is one of the ingredients of Isatis Cooling. I have a local herbal store here in Berkeley, CA where I buy Qing Dai (about $0.12 / gr). Also available on Amazon from different vendors. It worked for me within a day - and I had more than 25 years of constant on and off bleeding. Good luck.
Posted 3/1/2018 6:12 AM (GMT 0)
Thanks ipoop that is great information. I was about to ask my doc for it but now I won't.

Dawgg... you took Qing Dai on its own? I was looking at Isatis Cooling and there are like 10 or more different herbs in it. Does it work just as well by itself?
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