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Uclerative proctitis newbie

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Posted 12/22/2017 7:24 PM (GMT 0)
Hi everyone!

I'm here because I need advice on living with and managing my proctitis smile

I was diagnosed 3 ish months ago after 3 months of ongoing symptoms; mucus and blood when passing a stool, urgency and going 4-5 times a day (compared to some things I've read on here I consider myself extreeeemely lucky there), plus some on/off pelvic pain. I was diagnosed via colonoscopy and given asacol suppositories to take once daily before bed.

I came off the asacol when I ran out about 6 weeks later and told to stay off them, and all was well in the world once again!

3 weeks later, I noticed the mucus was gradually coming back, however, and within the next 2 weeks after that I was right back where I started sad

My IBD nurse has since prescribed me the asacol again, which this time isn't working as well as last time. It was better but still lingering after a week. I was then prescribed prednisolone 5mg to take at night and told to continue the asacol in the day.

A couple of weeks on I've noticed that its a little better, but every couple of days I pass a blob of pink mucus or I'm still bleeding a little after opening my bowels. I'm due back to see the specialist on 2nd Jan.

Initially I was told that proctitis eventually burns itself out. During my initial flare before the colonoscopy I did notice that it was subsiding somewhat (but not completely stopping).

I don't know how long I'm supposed to be on these suppositories for. Does anyone take suppositories indefinitely or is there some other form of maintenance medication for proctitis? (mine is 2-10cm)

I don't know exactly what sets mine off yet since this is all very new to me, but it's proving difficult to get rid of this time around. I've had bouts of fatigue this time with it that has since subsided and I'm carrying on with my everyday life as normal again.

Sorry for the long post ^_^
Posted 12/22/2017 8:34 PM (GMT 0)
Go on Asacol supps and stay on for as long as you want. Don't be in any rush to get off them. Some people need to take long term. I could never get off them until my proctitis spread to involve more of my colon.

500mg of asacol supps is actually too small of a dose. A better dose for flare would be twice a day or 1000mg and bedtime.

Options in case not fully responding would be to add oral mesalamine (5- ASA). Studies have shown that both oral and rectal are better then rectal alone.

Another option would be add rectal steroids such as cortifoam. I would avoid oral steroids at this point and 5mg is actually a really small dose.

Post Edited (joe99) : 12/22/2017 1:45:18 PM (GMT-7)

Posted 12/22/2017 11:18 PM (GMT 0)
proctitis may bur out by ulcerative proctitis does not. you should have been instructed to taper to a less frequent asacol dosage, but not to just quit.

it does not sound like you are being treated by an IBD specialist.
Posted 12/23/2017 5:56 PM (GMT 0)
Did you have biopsies done during the c-scope? And do you have a copy of the results? If not...get one.

You should be on higher dosage of rectal meds, such as retention enemas of 4g....as well as oral mesalamine.

Clearly the initial treatment was barely sufficient.... considering MOST who have had this treatment end up with upward spreading of disease anyway.

Welcome to the forum. I encourage you become more forward in dealing with your treatment....as in requesting full coverage meds.

Any medical professional, who pacifies a patient with the statement that ulcerative proctitis burns itself out, is an idiot.
q
Posted 12/24/2017 10:48 PM (GMT 0)
Thanks for the replies peeps smile

Despite a wonderful christmas eve, the bleeding seems to be on a steady increase once more. I won't be seen by a specialist again before the 2nd Jan and I'm keeping my fingers crossed that the asacol/pred suppositories will at least slow the progression down before I can be seen if anything.

When it's bad, there's fresh blood in the toilet bowl, I pass a lot of gas and mucus and a 'crumbly' stool. I'm not there just yet, I seem to be having perfectly normal and well formed stools, I just bleed afterwards and its usually in the evening before I take my pred.

I didn't know that there was a difference between proctitis and ulcerative proctitis. My IBD nurse said that I have proctitis which should 'burn itself out'. But on my colonoscopy report it says ulcerative proctitis under diagnosis. I had 8 biopsies taken and they were all fine.

I'm confused by everything to be honest. My proctitis did seem to be burning itself out by the time the colonoscopy came around and the asacol alone worked pretty much straight away.

By the way, if everything was totally normal again for 3 weeks does that mean I had a period of remission? Seems to short to me :/

Since it's come back the same treatment I had before doesn't seem to be working :/ does that mean it's getting worse? My symptoms aren't all that debilitating luckily, just a few bouts of fatigue and lack of appetite, but not much pain at all. If anything my proctitis is just annoying.

I don't know if it's getting worse or I'm just on the wrong medication...
Posted 12/24/2017 11:17 PM (GMT 0)
Proctitis is caused by something. So perhaps a bacteria or infection, but they didn't say you were positive for any pathogens? Did you do stool tests?

/www.webmd.com/digestive-disorders/proctitis#1

The strange part is the discrepancy between your pathology report and how it's being treated. If the pathology says ulcerative proctitis, then you would think it would be treated that way. How could the pathology report say UP and the biopsies be "normal"?

I think what you're doing is a good plan, but you may be undertreated as others mentioned. The steroid supps and asacol should help, but it's possible you would do better with enemas. Do not discontinue medication, taper down to where you're feeling 100% & make sure you have some on-hand, for if you have any flare ups in the future. Three weeks is short for remission. I always had 6 months or a year between major flares. Each one requiring additional medication to curb.

I am not sure if anything burns itself out. With proctitis, you take an antibiotic and clear the infection, and it goes away, it didn't burn out, it was cured with the antibiotic. In cases of UP, it's chronic.

Of course follow your doctor's advice, but like others have mentioned, you would benefit from seeing someone who specializes in IBD. Best wishes for a happy holiday smile
Posted 12/25/2017 12:55 AM (GMT 0)
the easiest way not to be confused is to listen to what the members of this forum are advising you and not the medical idiots you have been seeing -

i would advise you not wait till jan 2nd - call them relentlessly and tell them you want a script for mesalmine enemas and additional asacol so you can increase your dosage -

and hopefully you can have a Merry Christmas -
Posted 12/25/2017 3:37 AM (GMT 0)
Don't use the term burning itself out. They who are treating you don't even know what it means, and it a crappy way of pacifying a new patient. It doesnt go away, it's for life if its ulcerative. Idiots. Unless its their way of saying healing, which burn my you know what! Sigh. Sheesh...

You're new to this situation....become your best advocate and request higher dosage mesalamine of both oral and rectal as we suggested.

q
Posted 12/26/2017 10:24 PM (GMT 0)
Hi all smile

Unfortunately I'm back to square one despite still taking my medication. Though I don't think all the christmas food has done me any good... oopsie! I'm still only going up to 4 times a day with fully formed stools but 3 out of 4 times I'm bleeding. I also have difficulty passing the stool, which I'm guessing is due to the inflammation.

I'm going to call my IBD nurse in the morning, they don't answer the IBD hotline on bank holidays which has left me screwed for today. I'm going to try and get myself seen at the hospital before the 2nd Jan but I can't see that happening realistically :/ (NHS).

I remember them saying last time that I'll need some more bloods doing if it didn't get better (all my bloods up to now have been normal). I gave them a stool sample last week, though most of it was blood; I don't know if they can work with that or not.

If I can't be seen face to face before next week then they'll probably put me on something else until then, but I'm going to really press for an appointment in the next couple of days.

There have been a few occasions recently where the suppositories don't stay put for very long (no longer than a couple of hours) because despite emptying my bowels beforehand, I seem to need to go soon after again.

I also suffer with PMDD (pre-menstrual dysphoric disorder) which is set to kick off in the next few days. My bowel habits change during this time and I go more frequently due to the hormonal changes (emotions, anxiety etc.). I'm not having treatment for the PMDD as during the past few years I've discovered that I'm intolerant to most contraceptives, and I believe to this day that coming off a pill, that was causing me absolute havoc, triggered the proctitis in the first place. The only treatment they can offer me is anti-depressants, which they won't give me because they can upset the stomach.

I'm tucked up in bed for the night, just taken my pred even though it's stopped working in hope that it is doing SOMETHING to help. I have lots of questions to ask my specialist about my diagnosis, and I just wanted to say thanks to you guys for giving me the courage to do so smile

Wish me luck for the morning!
Posted 12/31/2017 10:44 AM (GMT 0)
If there's one thing I've learned recently it's that proctitis is veeery stubborn.

I've been on a new course of treatment for the past few days;
Oral prednisolone 30mg daily, reducing dose weekly.
Oral mesalazine 800mg x3 daily.
I was told to stop taking the suppositories because they were doing nothing for me.

All was well in the world again until last night when I had another bleed, but about 5-6 hours prior I'd eaten a looot of food at a party (sandwiches, cake, pie, crisps etc.). I also drank fruit juice after drinking only water for the past week. I also had horrible back ache, bloating and cramps.

I'm wondering if overeating or eating food I'm not used to could aggravate a flare? I'm hoping that this was a one off. I've been again this morning with only a little blood which would be the aftermath of last night.

My appointment is still on the 2nd Jan because they couldn't fit me in any earlier.
Posted 12/31/2017 6:03 PM (GMT 0)
Hi....request mesalamine retention enemas of 4g dosage. Did you ask?

The fact regarding the suppositories doing nothing is that the dosage was useless for a flare. You should have been on higher rectal meds from the start before the pred.

q
Posted 1/1/2018 7:38 PM (GMT 0)
My appointment is tomorrow morning, and I have a lot of questions to ask, the most I've gone into detail about my proctitis with a specialist face to face was right after the colonoscopy... which I can't remember most of. (Helpful, I know).

At first I think I was told that it was idiopathic proctitis which I had a 50% chance of relapsing with in the future, which I now have.

I think I really need to know where I stand regarding my diagnosis and the level of the disease, I'm writing a shed load of notes down to take with my to the hospital tomorrow.

I did request that I stay on rectal meds on a higher dosage, as well as the oral pred and mesalazine but was reassured that I didn't need them. After 5 days on only oral meds, I have noticed a big improvement but I've still had two small bleeds. I'll request a higher does of rectal meds again tomorrow.
Posted 1/2/2018 3:19 AM (GMT 0)
Keep us updated please....
q
Posted 1/2/2018 7:06 PM (GMT 0)
What a wild goose chase... which began with being told that I was in the wrong hospital (admin error), and it took me a good while to be seen because there was only one IBD nurse on site.

She was very apologetic and cut straight to the chase by showing me photographs from the scope and the histology report that confirms that I have ulcerative proctitis, which is obviously active.

I was told to continue the pred as prescribed but to up the Octasa (mesalazine) from 2.4g daily to 4.8g, apparently I was on a maintenance dose. I've also been told to reintroduce the asacol to give it another boost. I've been told that suppositories are better for me than enemas due to how low down the main part of the inflammation is (also, I tried an enema twice before and I managed to injure myself sad )

I have to produce some stool samples this week and had a bunch of bloods taken to monitor things and to do a full screen on whether I'm suitable for immuno-suppressants, which I'm told I'm unlikely to need. I may also need a calcium supplement.

But for now, it's back to work tomorrow after the holidays! And the pred/octasa combo seems to be going alright, I woke up with actual energy this morning and noticed some improvement :O
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