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Advice needed - proctitis/mesalamine enemas

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Ulcerative Colitis
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Posted 2/16/2017 12:27 PM (GMT 0)
Hi, I'm just hoping to get some advice if possible!
I'm in the middle of a second flare up of proctitis - first time was about a year ago but after successful treatment with mesalamine enemas and steroids (prednisolone) the consultant withdrew my meds and I've been managing ok with just probiotics and being careful with my diet.
Had a trip to India in January 2017 and picked up food poisoning - that and stress with moving house/new job has set off another flare up again.
I've been using mesalamine enemas twice a day for the past 3 weeks. My symptoms had been improving a bit but today they seem to have got worse again. The consultant's advice when I was discharged was that if I flared up again I needed to take the enemas twice a day for a fortnight and if they didn't work to have another course of steroids.
I had an awful time with the steroids so I'm kind of reluctant to go back on them - just wondering if people had any advice for how long I should give the enemas before looking at other treatment options??
Thanks in advance for any advice!!
Posted 2/16/2017 12:43 PM (GMT 0)
while i'm never a big advocate for extensive viewing, i would suggest having a look see up your hooter to see what's going on before jumping on steroids again -

were you scoped at the time of your DX ?
Posted 2/16/2017 1:02 PM (GMT 0)
Hi soynomore thanks for the reply! Yes I had a flexible sigmoidoscopy last year when I had the first onset of it. Yes that's good advice although it's a bit tricky because I'm in the UK and have just moved so will need to go and see a new GP and ask them for a referral for further investigation - no idea how long that will take so just worried that if I'm not treating it properly now it's going to get worse. I think maybe a trip to the GP tomorrow to speak to them might be a good idea though smile
Posted 2/16/2017 2:15 PM (GMT 0)
if you have gotten some relief form the enemas, then adding Uceris instead of pred might make sense. Uceris is more limited to the colon. but some say it is not as strong. could work for you.

getting on a low dose of oral mesalamine as a maintenance therapy could also make sense. Unless you have known food tolerances, I think it is mostly a myth that you can retain remission by watching diet. At lease follow a diet rich in anti-inflammatory foods and supplements.
Posted 2/16/2017 2:59 PM (GMT 0)
"I think it is mostly a myth that you can retain remission by watching diet"


i think what you're thinking is mostly a crock -
Posted 2/16/2017 2:59 PM (GMT 0)
Have you had a stool test to check for possible infectious causes to your symptoms (c diff)?

Proctitis can be difficult to treat. You might need stronger medications like immunomodulators (azathioprine/imuran or 6mp).

You can try steroid enemas, foams, or suppositories. You can try delayed release oral steroids like clipper (UK) or uceris (USA and Canada). Some times those are enough and you can avoid prednisone/prednisolone.
Posted 2/16/2017 5:37 PM (GMT 0)

soynomore said...
"I think it is mostly a myth that you can retain remission by watching diet"


i think what you're thinking is mostly a crock -

I'd say it depends on how severe your disease is. If it's a havoc wreaking beast there's no stopping that son of a B with anything.
Posted 2/16/2017 5:49 PM (GMT 0)
Probably a c-scope for total colon, cecum and terminal ileum is in order.
With biopsies.

If you did have a gastro bug, stool samples would be a good thing.

Are you on an oral mesalamine?

What enema are you using and what dosage?

q
Posted 2/16/2017 5:59 PM (GMT 0)
Hi all thanks very much for the advice. I had a stool test to rule out infections and that came back clear but they didn't do a faecal calprotectin test so I'm thinking I should maybe ask for that (and a referral for another flexible sig). I'll ask the GP about those possible alternatives to prednisone and see what they say.
Posted 2/16/2017 6:01 PM (GMT 0)
If you've not had a colonoscopy, you should push for that rather than a sig-scope.

Good to hear that stool samples were done.

q
Posted 2/16/2017 6:04 PM (GMT 0)
Hi quincy no I'm not on oral mesalamine - just the Pentasa mesalamine 1g enemas 2 x per day (not much fun trying to retain the morning one..!).
I will ask about a c-scope - the last time they just did the flexi sig but maybe I should ask if they need to check it all out
Posted 2/16/2017 6:11 PM (GMT 0)
The pentasa enemas will cover all the area you have affected, but the dosage is low. You would be best to ask for the 4g dosage and use it nightly. I can imagine he morning one is hard to retain. There is, however, asacol foam, which I believe is easier to retain.....but again, it's only 1g dosage.

A sig scope would be a waste of time and money since you still have to prep. You need to know what's happening at the highest poing instead of ignoring it.

Again, you should be on an oral mesalamine.

q
Posted 2/16/2017 6:25 PM (GMT 0)
Ok that's great thanks for the advice. I think it's going to be difficult because the GPs don't seem to understand proctitis or how to treat it but I'm going to ask for a referral to a specialist and for the full colonoscopy and hopefully they can get me on some better meds including the oral mesalamine.
Gutted it's come back tbh, I had a nightmare with it last year and was hoping I'd not get it back again.
Posted 2/16/2017 6:44 PM (GMT 0)
Absolutely see a GI. Keep this in mind....there is a huge value to a GP who actully gave you appropriate meds...some GIs actually refuse rectal meds. Go figure!

As well, the enemas should be used nightly (and increased to twice daily if needed) till symptoms subside totally (and that includes constipation). Then they should be tapered....basically, the butt rules with those symptoms regarding timing.....then stay at a maintenance dosge. I used to taper to weekly, but stick to twice weekly to help maintain remission.
Yes, I still flare, but very, very mildly.

q
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