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Ulcerative Colitis
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Posted 6/9/2022 7:54 PM (GMT 0)
I saw a consultant yesterday (unfortunately not my usual one and to be honest I didn’t get a good vibe off of this one)
Told me the appointment was only to discuss my post op recovery.
When I mentioned the proctitis he said we needed to wait for colonoscopy, said he’ll look into why I haven’t been booked in yet

I told him I’m not seeing much of a difference with the mesalamine suppositries. He was reluctant to change my meds but after some pushing he has prescribed me Budenofalk foam enema.

Has anyone had any experience with these and how effective did you find them?

Asked him for more information - side effects, when I should be expected to see improvement, will I use these long term etc and he couldn’t answer any of my questions.
Posted 6/10/2022 12:00 PM (GMT 0)
Currently using these. I can’t say they’ve made a huge difference. Ive had no side affects at all. I started them when i tapered off pred to keep things stable while I wait for entyvio to work.
Posted 6/14/2022 11:45 AM (GMT 0)
I’ve never used the foam but I have had great results with the steroid enemas. Hope they work for you and you get a scope soon so they can see what is happening.
Posted 6/14/2022 9:24 PM (GMT 0)
So far I can’t complain. The first couple of days I was getting a belly ache which I don’t normally get.

I’ve had 2 days of no leaking at all and 2 days of minor leaking when I sat on the toilet.

Find the enema a lot easier and comfortable to hold in and seem easier this time around as opposed to when I was pregnant and doing enemas

I haven’t had a proper bowel movement since Saturday which had me back and forth to the toilet for over an hour. (Not going for a few days is normal for me, I normally just leak blood and mucus when I feel like found) but as I said haven’t had anything the last couple of days

Been chasing for my scope, no one getting back to me. Had an appointment through text for next week which got me excited until I recieved another text saying it was sent to me in error.

Hopefully not too long now
Posted 6/14/2022 9:29 PM (GMT 0)
Good to hear you are doing better!
Posted 6/23/2022 6:04 PM (GMT 0)
Hey,

Just thought I’d update on progress.

Been on Budenofalk for 2 weeks now. Foam enema I do once at night and that’s it The leaking stopped within 2 days which was great. I thought I was seeing less blood with bowel movements - these movements were only every 3 days as still constipated.

The past 4 days I have been going more than usual. Still very constipated but having to go to the toilet on average 2-4 times per day - noticing more blood. Blood is mixed in with the stool along with mucus and also there when I wipe.

I find when I do have a ‘normal’ bowel movement it seems like there is less blood but these movements only happen 1-2 times a week.

Is it early days to tell whether the enema is working?

The no leaking is definitely a positive although I do feel like the suppositries in the morning had alot to do with that.

Still watching what I eat - eating alot of fermented foods and probiotics. Have been taking curcumin supplements for a month now but can’t tell if have made a difference.

I chased and chased and have finally been booked in for colonoscopy in 2 weeks so at least after that will know what I’m working with.
Posted 6/24/2022 5:53 AM (GMT 0)
It means you are still flaring, but the inflammation will most likely be limited to lower in the rectum. It's awesome to see you're able to retain the enemas...using the supps during the day is good.
It's great you kept in contact re getting your c-scope...2 weeks is impressive.

Looking forward to your results.

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