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Oral meds for proctitis?

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Ulcerative Colitis
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 8/20/2020 11:03 PM (GMT -7)
Hey y’all,

Dx’d with idiopathic proctitis Aug 2015... I’ve been on generic mesalamine enemas nightly since last Oct. I had trouble getting a refill recently and had to drop off of them for three nights. I subbed with some hydrocortisone enemas while waiting to get my refill and boy that didn’t work! Back into a flare. Ugh. Not a major one but not feeling great. Lesson learned.

So I’m back on the rowasa wagon and just curious what opinions are about oral meds for maintenance of remission of proctitis. I’m overdue for a scope but am considering taking something like Asacol in the meantime as a preventative. The PA I went to seemed convinced oral meds don’t get low enough to treat the rectum but said I could try them if I want to. I’m okay using rectals long term assuming they’re most effective but wouldn’t mind adding an oral med if it’s got good utility at keeping any future development of inflammation minimal, especially if the risks of taking the drug are low. Please let me know what your thoughts/experiences are! Thanks.
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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 8/21/2020 9:31 AM (GMT -7)
You were still in a flare...not in a flare again after 3 nights.

What exactly are your symptoms? And whether you have proctitis or pancolitis...oral 5ASA meds should be part of the med regimen.

q
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 8/21/2020 12:33 PM (GMT -7)
Hi q,

2-3 semi-formed bms per day which is typical. No diarrhea or constipation. Some blood and mucus mix at the beginning of at least one of the bms. Some intermittent tenesmus and a slight burning feeling in the lower gut (this is usually a hallmark symptom of inflammatory activity for me). I still can’t tell if the occasional minor bleeding while I was taking enemas nightly was hemmies or rectal ulceration. Gotta get in for that colonoscopy to get a full view.

I’m going in for blood work soon and will talk to the GI about oral med options. Crossing fingers that my insurance doesn’t rip me on co-pays.
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iPoop
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Joined : Aug 2012
Posts : 16194
Posted 8/21/2020 12:35 PM (GMT -7)
The most successful treatment for Proctitis is rectal-route meds like suppositories or enemas (goes straight to the source and is effective). Some doctors do switch Proctitis patients to orals during a remission, mostly due to compliance worries with maintenance rectals.

The orals are designed to release medication over the roughly 5 foot length of the large intestine, and your rectum is the last 6-8 inches of that area. By the time your oral pills reach your rectum, they're mostly dissolved and active medicine mostly dispersed. The treatment of the rectum via oral pills seems to be inconsistent and incomplete. Maybe very mild proctitis cases are okay with it, but I'd think it's less effective than rectals.
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nakamura1967
Regular Member
Joined : May 2018
Posts : 113
Posted 8/27/2020 12:48 AM (GMT -7)
You need oral meds and rectal meds in our experience. I would say for proctitis the rectal meds are essential to treat the disease and the oral to stop it progressing.
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Guigsy
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Joined : Jul 2020
Posts : 15
Posted 8/30/2020 5:44 PM (GMT -7)

nakamura1967 said...
You need oral meds and rectal meds in our experience. I would say for proctitis the rectal meds are essential to treat the disease and the oral to stop it progressing.

I was under the impression that, as an autoimmune disorder, if chronic proctitis is going to progress there’s no stopping it. But perhaps oral meds could slow down progression. I need to do some more research.
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quincy
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Joined : May 2003
Posts : 32560
Posted 8/30/2020 9:08 PM (GMT -7)
The suggestion of oral/rectal 5ASA is baseline medication therapy and in practise for decades. Continue your research till it meets your approval, although, experience speaks here. What more do you need till it's an OK thing to do? Been here a long while and know that many have put it off or quit meds... to their detriment.

q
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TroubledTurds
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Joined : Jan 2004
Posts : 8593
Posted 9/1/2020 11:23 AM (GMT -7)
what quincy says x a bunch -


TT
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 9/16/2020 12:29 PM (GMT -7)
I have an appt. in two weeks and will be asking my GI for oral meds. Some sort of 5-ASA. I’ve been reluctant because I just hate taking medication and all the potential side effects that come with it but it looks like the benefits outweigh risks with this particular class of drug.
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Stayingstrong970
Regular Member
Joined : Dec 2019
Posts : 20
Posted 9/16/2020 12:45 PM (GMT -7)
5-asa’s have very few side effects. Trust me get on top of it now or you will end up on much more serious drugs.
Good luck

Missing Key Value : en-US, 736

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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 9/16/2020 8:49 PM (GMT -7)
I've taken them for nearly 32 years. No side effects except no worsening of UC and excellent results, minor flares...etc. Request them...because if you waver or whine about possible side effects and not liking to take meds or whatever, the doc might acquiesce that you don't need them. Been here long enough to say that it most probably will not serve you well in the long run if you don't. Just wondering if you read the benefits of it helping protect from cancer?

Good to hear you have an appointment soon.
Looking forward to your update 😊
q
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 922
Posted 9/17/2020 3:13 AM (GMT -7)
Hi, just wanted to come back on a topic you mentioned above. I had pancololitis when first diagnosed, it later evolved into proctitis as the various medications could not fully control it. Having had multiple scopes (5) I can confirm that 1. The inflammation was always worst in the rectum and 2. The worse my symptoms, the further up the descending colon the inflammation had spread. For the vast majority of UCers, inflammation starts in the rectum and spreads upwards as the flare progresses. Keeping mild inflammation in the rectum under control can and does prevent it from spreading. I use immunomodulators but the last time I started to flare i used enemas to get back into remission. And we know for sure that i have pancolitis potential.
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 9/30/2020 11:03 AM (GMT -7)
Had an appointment with the doc. Going in for bloodwork and assuming that’s okay I’ll be taking a 1.2g generic mesalamine capsule in addition to nightly Rowasa and a Canasa in the morning (the latter for at least a month). He mentioned the utility of biologics for knocking things into remission but wanted to try a 5-asa combo first...I am trying to hit the proctitis more aggressively than I have been. Rowasa seems to get me most of the way there over a few months but there has been a degree of inflammation stubbornly simmering away over the last year.
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quincy
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Posts : 32560
Posted 9/30/2020 10:48 PM (GMT -7)
I hope it's 1.2g twice daily.
q
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 10/3/2020 3:33 PM (GMT -7)
It’s a generic mesalamine 1.2g, three tablets per day. Seems like a high dose level to start out with but what do I know? I take omeprazole as well and the pharmacist says that can diminish the efficacy of the 5-ASA so I gotta taper off of the former and maybe take famotidine instead. I sure hope the nightly Rowasa + tablets brings a true remission this time. I’ll stick with both forever if they really work.

Post Edited (Guigsy) : 10/3/2020 4:46:32 PM (GMT-6)

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journeytoheal
Regular Member
Joined : Aug 2010
Posts : 34
Posted 10/4/2020 6:48 AM (GMT -7)
I am now on a oral/enema mesalamine combo, having started in early August and it has been a game changer. I started with proctitis and my condition evolved to left-sided colitis based on my recent scope in August. I had not been on any oral meds for at least 10 years, which is probably why it got worse and, I admit, was intermittent with my enemas, at times, but took it more than not. I was in a worsening flare, worst compared to my previous symptoms which were very mild. We talked about biologics after my scope but my GI wanted to try me on this combo first since he didn’t see my symptoms being beyond mild-moderate. I was still only going 1-2 x per day but with bloody mucus mostly and some formed stool. Knock on wood, it is working wonderfully. I have no symptoms right now. Try it out. Hope it helps you too.
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 10/25/2020 2:31 PM (GMT -7)
Quick update: I’ve been using the Lialda/Rowasa combo for a week now. Once I started the tablets the bleeding and mucus stopped immediately (except a tiny bit today). Pleasantly surprised! BMs vary from 2-4 a day, first one of the day is softer from the enemas but the rest are pretty well-formed and look typical for me when things are calm. I do tend to pass a big volume of stool as I eat a vegan diet very high in fibre. I did have a very small bit of blood today which I think is happening at the anus. It’s been sore and it itchy lately and I think it’s partially from using rough toilet paper last week for multiple BMs on multiple days. But it doesn’t look like the mucus-blood of a raging proctitis flare.

Anyway, I’m going to stick with this treatment for a while. I’ll continue with Lialda as long as it works well but I’m wondering about tapering enemas. When’s a good time? And what’s the reasoning behind tapering? I’d love to bring them down to a few times a week but will use them every day if needed.

Post Edited (Guigsy) : 10/25/2020 4:23:29 PM (GMT-6)

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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2357
Posted 10/26/2020 3:48 AM (GMT -7)
Glad the oral meds are working! My doctor’s policy is that you wait to taper recitals until you have had 2 weeks of no bleeding. Then start every other day for at least two more weeks before reducing again.
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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 10/26/2020 9:24 AM (GMT -7)
Stay on the regimen for another month, and treat the anal area with external meds...sounds like a fissure.

At the one month, if all has been consistently good, then start your taper to every second night for at least a month. From there, if all is good, go to every third night or twice a week.

After 6 months or so, consider to drop the oral to 2400mg daily...and STAY there. Should you flare, it can be increased and then the fun starts all over again....
q
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 12/21/2020 3:49 PM (GMT -7)
Update: haven’t tapered rectals yet. I’ve been *almost* symptom free for the past two months on combo therapy. Two mostly solid BMs a day, three max, no urgency, no mucus, no D or C. Still intermittent blood though. Two to three times a week. Small amounts on stool. Used a hemorrhoid cream the last two weeks nightly in case it was hemmies or a fissure. Seemed to relax that symptom, then I got some mucus with blood last night (ugh). None this morning though. Mild abdominal uneasiness and pressure. What a frustrating disease this is.

For treatment, I’m looking at going ahead with Canasa in the morning and Rowasa in the evening and staying on 3.6g orals. I initially avoided the supps due to expense (150$ for 30 days) but am desperate enough to try now. Anyone else have experience with high levels of ASA rectals to kick stubborn proctitis into remission? I’m open to suggestions. I thought about cortenemas too though last time I tried them for three nights and they seemed to make me worse. Maybe I wasn’t patient enough with them.

Also: my GI is retiring so I’m waiting to get in with a new one. He’s convinced I’ve still got limited proctitis based on lab results and symptoms. My guess is there’s a patch of inflammation in there that is very stubborn. I do want to get a colonoscopy next year to get some certainty though I may be waiting a while considering the only place to get on here is the hospital and they’re limiting the procedures due to the Covid situation.
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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 12/22/2020 1:10 AM (GMT -7)
Hi...the longest I was on tthe enemas nightly was 4 months...then s l o w taper. Some others have been on longer.

If you have the steroid enemas, try them during the day and the mesalamine at night. The other option is steroid suppositories during the day and mesalamine enemas at night.

When you say blood....how much, around stool, and in the toilet?

Hang Tough...hope your doctor will provide you with an rx with lots of refills gill you get a new GI,.

You are improving....a good thing.

q
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 12/23/2020 10:40 PM (GMT -7)
Hey q,

Thanks for the encouraging words. The combo therapy is definitely working... It’s been two months and I get the feeling I’m very slowly improving with the occasional hiccups. The blood from a few nights ago was around the stool (with mucus) and I’m guessing a teaspoon or less? None in the toilet. Whenever I bleed it’s only in the stool and/or on the surface of it. After seeing it a few nights ago I’ve had almost none in the last few nights, save for a teeny bit once. Seems like bleeding is the absolute last thing to hang on while everything else subsides. And when I saw hang on I mean small amounts on a weekly basis for moooooooonths.

Hopefully I can get that solid month of no problems so I can try a taper again. I think I’m going to alternate Canasa supps on off nights considering I’ve been on Rowasa for over a year. I’m freaked about taking the taper plunge considering things are working pretty well but I like the idea of having something to increase into when needed. The dream is to get the rectals down to a few times a week. Crossing fingers.
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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 12/24/2020 11:00 AM (GMT -7)
With blood is inflammation...after blood there is still inflammation healing, so it's not the last to go.

But blood on stool can be from a hemmie on its way out...so keep that in consideration as well.

Clarifying...you've been on nightly Rowasa for a year? And the plan to use supps between is a good one.

Keep us updated.
Happy Holidays 2020-style!
q
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Guigsy
New Member
Joined : Jul 2020
Posts : 15
Posted 2/10/2021 10:48 PM (GMT -7)
Been on Rowasa nightly for almost a year and a half... still getting good, if uneven results.

Had an appt. with a new GI doc today. He was insistent on doing a scope in a month or so. Any suggestions on what to ask for? The main request I heard from y’all to mention is “biopsies throughout.” Just want to make sure surveillance is thorough. Also, he mentioned possibly trying Humira to knock the proctitis out and I told him I want to max out rectal meds before any step-ups. Might go to a steroid suppository in the morning in addition to the nightly rowasa for a bit and see how that goes. Once I get scoped we’ll talk it over... I’ve got GERD as well so the doc is doing an endoscope too! Fun fun!
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quincy
Elite Member
Joined : May 2003
Posts : 32560
Posted 2/10/2021 11:32 PM (GMT -7)
Hi...definitely frustrating, and not getting worse...a good thing.

When is the date for your scopes?
Definitely ask for biopsies throughout...it's appropriate for UCers to be screened rectum rectum to terminal ileum. Biopsies will also be done during your uppermscope.

I see in your signature that you failed steriod enemas...have you used them in conjunction with the mesalamine enemas ?

Hope you like your new GI and that you're able to get on a med regimen that will help get you into a remission state.

q
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