What is proctitis? Same as UC?

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had_enough1980uk

had_enough1980uk

Joined
Oct 25, 2012
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104
I got a colonoscopy today and the diagnosis was "proctitis". The nurse on the phone said it was more than likely UC. Has anyone got any experience with proctitis?
 
DS has proctitis among other areas of crohn's disease.
He is inflamed from esophagus to rectum so it can be crohn's related, UC related or a disease all on its own.
Basically it means your rectum is inflamed.

your doc -GI can describe the best course of action for you depending on what he saw/biopsy results.
There are foam enemas, suppositories , 5-ASA's ( Asacol-DS takes) depending on your history.

Proctitis is inflammation of the lining of the rectum, called the rectal mucosa. Proctitis can be short term (acute) or long term (chronic). Proctitis involves an inflammatory change of the rectum (within 15 cm of the dentate line). Proctitis is similar to proctosigmoiditis but is not necessarily associated with proximal extension of disease into the colon and usually does not evolve into ulcerative colitis. If proximal extension does occur, it usually does so within the first 2 years of initial diagnosis.

Proctitis has many causes. It may be a side effect of medical treatments like radiation therapy or antibiotics. Proctitis caused by sexually transmitted diseases (STDs) is transmitted through receptive anal intercourse and is most commonly due to gonorrhea and chlamydia, or less commonly lymphogranuloma venereum or herpes virus. Nonsexually transmitted causes include autoimmune disease of the colon, such as Crohn disease and ulcerative colitis, celiac disease, chemicals, rectal instrumentation, and trauma to the anorectal area. It may also occur as idiopathic proctitis.
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Medication Summary
Drug therapy consists of antibiotics, antivirals, corticosteroids, and GI agents
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from:

http://emedicine.medscape.com/article/775952-medication
 
Thanks for the info :)

Got the steroids and suppositories today. Haven't taken them yet though.

Got mixed feelings as I don't want to be inserting suppositories everyday of my life :-( but I know steroids have much worse side effects
 
hopefully itll not be everyday. when and if you go into remission you shouldn't have to use suppositories.
uc starts and ends in the rectum and its the most difficult to shift.
proctitis is just the area that's inflamed ie the rectum. you also have left sided colitis, proctosigmoiditis(something or another) and pancolitis which means the whole large bowel is infected. some people's uc can spread very quickly so its important to find the right combo of meds. if you feel the suppositories aren't working or are making you worse(yes it can happen) get on to your GI asap cuz theres loads of different drugs out there to try.
its also important to know that proctitis is a form of IBD and just because its limited to the rectum doesn't mean it cant get out of control very quickly.

all the best
ju
 
sickinlk said:
hopefully itll not be everyday. when and if you go into remission you shouldn't have to use suppositories.
uc starts and ends in the rectum and its the most difficult to shift.
proctitis is just the area that's inflamed ie the rectum. you also have left sided colitis, proctosigmoiditis(something or another) and pancolitis which means the whole large bowel is infected. some people's uc can spread very quickly so its important to find the right combo of meds. if you feel the suppositories aren't working or are making you worse(yes it can happen) get on to your GI asap cuz theres loads of different drugs out there to try.
its also important to know that proctitis is a form of IBD and just because its limited to the rectum doesn't mean it cant get out of control very quickly.

all the best
ju
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Ditto. My disease started in the rectum and the first doctor I saw just gave me a steriod enema and azulfadine (back in 1986). Three weeks later my sypmtoms were worse and I saw another doctor who then put me on Prednisone. Just over two months after original diagnosis my entire colon and rectum were affected (small intestine was clear). Then 25 years later dx with Crohns, so back then I guess it was Crohns Colitis and not UC but oh well. Definitely want to inform your doctor anytime your symptoms are getting worse!
 
I started with proctitis years ago, a couple of suppositories and it didn't return until 8 years later. I don't know that it's 100% a sure thing that it's related to UC because that's not what I was told initially. However, it can be one sign.
 
sneezey said:
I started with proctitis years ago, a couple of suppositories and it didn't return until 8 years later. I don't know that it's 100% a sure thing that it's related to UC because that's not what I was told initially. However, it can be one sign.
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So are you saying the suppositories are only mean to be used for a short period to see if it works? If its works the odds are I won't have to use them for the rest of the life? It's just to be honest I don't want to start the suppositories to find out they work and then I need to insert everyday for the next 40 years
 
had_enough1980uk said:
So are you saying the suppositories are only mean to be used for a short period to see if it works? If its works the odds are I won't have to use them for the rest of the life? It's just to be honest I don't want to start the suppositories to find out they work and then I need to insert everyday for the next 40 years
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Suppositories are direct steroid of one variation or another. Definitely not meant for long term usage. I was only on that for maybe a month. If they work for you long term they switch to oral meds. But most people that I know eventually stops working and you're on something else anyway. I don't know many that are on it for more than 2-3 years and that's oral.
 
I have proctitis. Stemmed from my Colitis. My full bowel is clear apart from the last bit at the rectum. This can be so annoying because it can be hard to Do the toilet at times.

Im currently on predfoam, its a foam you spray up your arse twice a day and it works wonders. ill only use it a few weeks and things start improving.

This is my second time using it. If it doesnt clear you will have no choice but to get put orally on pred steroids and you dont want that. the side effects are horrendous.
 
Danico85 said:
I have proctitis. Stemmed from my Colitis. My full bowel is clear apart from the last bit at the rectum. This can be so annoying because it can be hard to Do the toilet at times.

Im currently on predfoam, its a foam you spray up your arse twice a day and it works wonders. ill only use it a few weeks and things start improving.

This is my second time using it. If it doesnt clear you will have no choice but to get put orally on pred steroids and you dont want that. the side effects are horrendous.
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What kind of side effects then?

Thanks for the info btw, good to get people's input!
 
The main side effects of pred steroids is putting a ridiculous amount of weight on. i put 2 stone on in 12 weeks and took me forever to loose.

Sweating and shiney moon face aswell lol
 
I have used supps. for over 6yrs as maintenance,and do ok on them.Only use them at night.Have stopped a few times,just to see what happens,and flare after a few weeks.The supps.usually sort me out quite quickly.
 
If in doubt ask.Do you have an I.B.D.nurse you can phone ? If not,go back to the Docs an discuss your concerns with him.You are obviousely not happy with things.The aim is to get on meds that suit you,and work for you.Everyone is different and finding what works is trial and error.This forum is THE BEST,but you can become confused with TOO MUCH advice.Hope you get what suits you soon.
 
sneezey said:
Suppositories are direct steroid of one variation or another. Definitely not meant for long term usage. I was only on that for maybe a month. If they work for you long term they switch to oral meds. But most people that I know eventually stops working and you're on something else anyway. I don't know many that are on it for more than 2-3 years and that's oral.
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Not all suppositories for UC are steroids. Mesalamine suppositories are also given long term for UC.
 
Pentasa is mesalamine, a super hopped up aspirin..non-steroidal. It's the mildest medication used for Crohn's and UC with very little side effects, if any. Most of us here have been on it at some point.
 
I tried it last night and I was worse this morning!!

Is it worth sticking with longer? Next I have been advised to move onto mezavant...
 
Mezavant is the same drug as Pentasa, mesalamine. How long have you been on Pentasa? It takes several weeks to notice improvement if it's in tablet form. Suppositories work much faster. What did you try last night?
 
mezevant is slightly better. im not long off that and im gonna ask to go back onto it. there a bit stronger, prob similar to pentasa but stronger.

if the suppositorys dont work then your next course of action is steroids. you will take them orally. i see your from glasgow so it will be the same as what they put me on. you will take 8 tablets in the morning and do this for about a month, then 7 for a week then 6 and so on.

You will put on weight and you will constantly be hungry. Some ppl like this because they are very thin, but it just gave me excess fat everywhere. Also gave me a big red shiney face. Im hoping i can get rid of my symptoms without using steroids again but may end up out of my hands.

There not the end of the world, they do usually make you better. But just a pain.
 
btw im taking colazide just now and there rubbish. ive went backwards since i started taking them. im going to ask to get put back on mezevant or pentasa!
 
Mezavant according to on line sources is the same as the US Asacol, also mesalamine. Basically the exact same thing in the suppositories only in an oral medication. If the suppositories are not working then the oral medication won't work either. It doesn't sound right to me to go from the suppositories to an oral medication of the same thing. I would have thought it would have been the other way around.

Danico85 is also right - that's perfectly good medication for maintenance. It's not the right thing for a flare.
 
Asacol may be the best solution for you although i dont know if it targets the rectum area as strong as other parts. Asacol was the first meds i took, along with the steroids and that brought me back from Severe inflammation to mild inflammation. Im just struggling to get the inflammation away from my tail end. Thats the hardest part, so i hope a few more weeks of predfoam will sort it.
 
Topical mesalamine (suppository form) can help when the oral form does not because it is topical. Same drug, but they work differently. Topical can help during an active flare and the oral can help keep things in remission.
 
For me, nothing worked to put me in remission...not even Remicade, but mesalamine suppositories definitely eased the pain. There are also steroid suppositories, mesalamine enemas, steroid enemas and steroid foam that can be used, but generally all of these are paired up with some kind of oral medication.
 
It was pentasa in suppository form I took last night.

The nurse said if they don't work to try the mezavant and only take 2 a day...
 
Got an appointment with the GP to discuss as I want to know what's happens. I got biopsy's done but I know that takes upto 6 weeks for the results to come back.

I also want to ask the GP about the meds/supps too

Not sure if my GP can do further tests while I wait on the biopsy results???
 
no offence to gps but they generally know very little. mine was like "oh, so you need a script for..how's it spelt" while she looked them up in a book...lol. I got the best info from the colorectal nurse. she should be your "go to" if theres owt wrong.
anyway, has your symptoms gotten worse since starting. you should definitely try the drug a little longer before crossing it of. I once stayed on salofalk enemas for 6 months even though my bowel couldn't tolerate it at all(it came straight back out.lol)
that's because I knew what was next if it didn't work. steroids.
ive been on mezavent too. anyway nothing worked for me that's why im on remicade.
proctitis can be stubborn but it also can stay that way and not progress at all.
ju
 
sickinlk said:
no offence to gps but they generally know very little. mine was like "oh, so you need a script for..how's it spelt" while she looked them up in a book...lol. I got the best info from the colorectal nurse. she should be your "go to" if theres owt wrong.
anyway, has your symptoms gotten worse since starting. you should definitely try the drug a little longer before crossing it of. I once stayed on salofalk enemas for 6 months even though my bowel couldn't tolerate it at all(it came straight back out.lol)
that's because I knew what was next if it didn't work. steroids.
ive been on mezavent too. anyway nothing worked for me that's why im on remicade.
proctitis can be stubborn but it also can stay that way and not progress at all.
ju
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Yeh i thought i would "play the game" and go and see the GP. GP gave me the nurses name that i was dealing with. I mainly wanted to go to ask them if they could do anymore blood tests that were worthwhile.

The pentasa made me worse. For the short time i used it. Sticking with the Mezavant for a while to see how i get on with that.

Hopefully by then, I will have my biopsy results back to see if it is indeed UC.
 
So I got the biopsy results and it said "minimal inflammation". The nurse specialist said that the GI consultant that scoped me put proctisis and it wasn't really that. She thought that inflammation was probably caused by me constantly going to the toilet in the morning. She said I was a difficult case to figure out. All my bloods and stools are all normal.

So she booked me in for an MRI to rule all small bowel conditions. She mentioned Crohns but I really don't think I have crohns.

She has put me on antibiotics which I will start tomorrow. This is just to rule things out at this stage.....

I am tapering down the pred as its not working... Still on the mezavant and will start lomotil to get my stools harder...

What does everyone think?
 
My brother was dxed with ulcerative colitis and proctitis over 35 years ago. It has been so long he still refers to sulfasalasine as salasopryosin. He initially had a couple of short rounds of prenisone on a quick taper. he has been having a scope every year as well as an endoscopy. The sulfasalasine is keeping things pretty well in check and if there is any slight flare of the proctitis he uses suppositories for a short time. He has been dx with barrets osophogitis(Please excuse any of my spelling mistakes there is too many big freaking words with these diseases) .He takes one of the heavy duty proton pump inhibitors for that. He has had no surgery and really has suffered in silence,old school ,you don't talk about bowel issues. It wasn't until i was dxed with bowel ca he started opening up a bit. All in all his condition seems to be very well controlled. He has only been on prednisone twice and last time his doc said he did not want him on it ever again.. Ron.
 
Had Enough.....to be honest,I think you are "over thinking".You've had bloods done and a scope,and you're going for a scan.You've had a diagnosis,sort of.So wait for your scan,and see what comes of that.I know you're worried,and rightly so,but please try to relax.Worry can cause all sorts of problems,and it doesn't solve any.Also,can I suggest a "sensible" diet.There are lots of threads on the forum with dietry advice.Also,keep away from threads that may make you worry unneccessarily,until you know exactly what illness you have.Go back to the docs if your symptoms worsen of course.Best wishes.Keep us posted.
 
I'm not over thinking it... This is what the nurse specialist has given me.... That last post was just all facts about my appointment lol
 
So i had to go home from work today as i was going to the toilet every 15 minutes (it was only a really small stool everytime). I was also bleeding and sore around my colon 9sorry if too much info!). It was just on the toilet paper and not the actual toilet.

When i got home, I phoned the nurse specialist. They said to go into their clinic tomorrow. She admited that she is puzzled by all of it as i didnt respond to 30mg a day of pred.
 
had_enough1980uk said:
So i had to go home from work today as i was going to the toilet every 15 minutes (it was only a really small stool everytime). I was also bleeding and sore around my colon 9sorry if too much info!). It was just on the toilet paper and not the actual toilet.

When i got home, I phoned the nurse specialist. They said to go into their clinic tomorrow. She admited that she is puzzled by all of it as i didnt respond to 30mg a day of pred.
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small stool?
is there a lot of mucous too. sound like you have a lot of inflammation in your rectum. maybe an enema or suppository will help.
steroids not working shouldn't be that puzzling to her. lots of people are steroid resistant. I was. didn't make a dickie bird of difference to me except blow mw up like a whale!
keep us updated on your app.
ju
 
had_enough1980uk said:
So i had to go home from work today as i was going to the toilet every 15 minutes (it was only a really small stool everytime). I was also bleeding and sore around my colon 9sorry if too much info!). It was just on the toilet paper and not the actual toilet.

When i got home, I phoned the nurse specialist. They said to go into their clinic tomorrow. She admited that she is puzzled by all of it as i didnt respond to 30mg a day of pred.
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Hope you've had some satisfaction today.I really feel for you.Please let us know the outcome of your clinic visit.Best Wishes.
 
Hi everyone!

Well I had the appointment today and a few things happened. She mentioned that the MRI was on hold as I commented how bad the cleanprep was. I said to her that if I had to take i would be wondered if there was an alternative. Apparently there isn't. I would have had the MRI by now if it wasn't for that lol ah well!

Anyway, she has not prescribed me codeine phosphate 30mg. Has anyone had experience of this? I know it's primarily used as a pain killer with constipation as a side effect. Also know it can be very addictive. But have u found this an effective treatment? Could this be used long term?

I get the pills tomorrow, so will take my first dose on Wed night all going well.
 
I haven't used it myself,but like you have heard of it being used for our problems.How often do you have to take it ?If it settles your D.then it's worth a try eh? I know it can be addictive,but see if it sorts you out first,then ask about that side of it.It's all trial and error.I don't know which is worse,but personally after you've been running to the loo as often as you have,C. might be a relief in the short term.I would try to drink plenty water,which might help.Has no one suggested you try loperamide ?It helps me enormously.Give the codeine a try for a few days and let's know the outcome.Good Luck.
 
I just picked up the prescription there. Its 56 tablets of 15mg. The nurse said to try taking two at night and then adjust to what suits me (upto three times a day)

Yeh its totally trial and error, which i don't mind. Hopefully something i try will work lol
Loperamide doesn't work for me. I had to take bigger and bigger doses for it to actually work, like my body was building up a tolerance to it.
 
O.k,well let's hope it's an improvement.You might not sleep tonight,wondering what the morning might bring LOL. Are you still on a sickie ?Try not to rush back if you are.Let your body rest and adjust over the week-end.
 
Just phoned my boss there and told him i would be in tomorrow. So thats just the three days off. Will put it down to a winter vomitting bug officially.

My stools were abit harder this morning for some reason so i might hold off on the codiene until tomorrow night. And see what tomorrow morning brings without any meds at all lol
 
Take ur time on the codeine it can bung u up . I was given it but only took one with 2 paracetamol every 4 hours granted it eases the pain but in th long run will bung u up try to give ur body a rest frm it aswel.
 
Everything seems to take an age when you're not well,doesn't it? But hopefully the MRI will get to the bottom of things (sorry !!).I would try to persevere with the codeine a bit longer,then if you're not happy,go back to the docs.Don't feel you're being a pest,they should be told if they're not doing the job (that's both the doc and the meds).
 
Got my MRI results in and it's all clear. Which isn't good news. I just want a dx to get some answers.

And to makes things worse when I was driving I had to go to the toilet straight away and it was all over my car.

All time low point now TBH :(
 
well your scope said proctitis so its not that they're saying theres nothing wrong.
bear in mind proctitis can give you just as much trouble as anything else.
im sorry your having a bad day. don't dwell on it too much just concentrate on staying well.
ju
 
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The nurse specialist said ttte proctitis dx was probably false due to the inflammation being caused by frequent bowel movements.

So I am unsure where to go from here.
 
what are your symptoms currently?
have you any diarrhea, blood mucous or pain and where is it?
sorry just trying to see if ive any ideas.
ju
 
Have you tried loperomide.You can buy them over the counter but your Doc.should prescribe them if your D.is daily.I have trouble in the morning and it's a nuisance as I like to get stuff done early.Loperomide works ok for me,although I try to use it when I absolutely must,and not just because it's there.I have Proctitis,and although I've been in remission for a good while,the urgency is always there.I'm careful with my diet (mostly)and although I don't work,I get up especially early if I have an appointment,to try to get all the bad stuff out of the way.Also,worrying about it doesn't help one bit.
 
Tried everything...

Loperamide I have tried, with little effect. I want something to stop the morning urgency completely. Not sure if this exists.
 
You won't be able to stop the morning urgency until the inflammation is gone.

I used to get up 2 hours before even attempting to get ready for anything in the morning just to get everything out. If I had a 7 a.m. appointment, I had to get up at 4 a.m. It sucks.
 
2thFairy said:
You won't be able to stop the morning urgency until the inflammation is gone.

I used to get up 2 hours before even attempting to get ready for anything in the morning just to get everything out. If I had a 7 a.m. appointment, I had to get up at 4 a.m. It sucks.
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What have u been diagnosed with? Do u find anything eases the diarrhea in the morning?
 
I have (or had, fingers crossed) UC. I've had a colectomy now.

Nothing helped me with morning diarrhea. Suppositories slowed down bleeding and other meds changed diarrhea from 20 to 10 times a day, but even then, the morning diarrhea was the same. BUT, that's just me. Many people with proctitis do find relief with pills and/or suppositories or foam.
 
Probiotics tablets worked for me and then they stopped working. The lomotil worked then stopped working for me :-(

I plan on doing my own type of elimination diet. Going to fast for the first two days then eat grilled chicken for the next 2 days after that. The slowly phase in rice, cheese and other food types. Does this sound like madness or a good idea??
 
Hi I'm still so confused .. I was just diagnosed with uc/proctitis , I have so many questions... I'm not sure what it means to have a flare up or be in remission? I went to the doctor because of blood in my stool since may 2013 I really don't have any other symptoms except having to go to the bathroom in the morning and at night it's usually more at night and not stool just blood and mucus I have no pain ..... Is this what they call remission? Or is remission mean that all this goes away and my bowels are normal again? Does this ever go away ? I had a colonoscopy 3 weeks ago and it showed my rectum really inflamed with ulcers on it ..... Everything else was clear my report said uc not active in my intestines but proctitis in my rectum uc not to be ruled out ... The dr gave me meds but I been scared to take them so I haven't started anything.... ......?....just not sure on what a flare up is or not ? If I'm even in one not? Does the blood ever stop? It's not a lot but its there sometimes it's more than other times ....lots of mucus:( morning I go to bathroom about 2 or 3 times and at night about 4 or 5 times Blood and mucus .... But I don't go all day long
 
Hello and welcome.It sounds to me like you are in flare.I was dx'd with Proctitis in 2006 with more or less the same symptoms.I was prescribed Asacol suppositories and they work fine for me.I stay on a maintenance dose.If I flare,I up the dosage and it usually does the trick.What meds.have you been prescribed ?.......You won't get better unless you take your meds,and you could get very much worse.There is a med.thread on the forum so you can check what they are,and what they're for.Give them time to work,it can take days or weeks.Once you're symptoms clear,you could be in remission for months or years if you're lucky.Just take one day at a time.I still have problems with urgency,mostly in the mornings,but Loperamide really helps with that.You just have to learn how to manage.Please take your meds.and let us know how you're doing.Best Wishes.
 
The Questran generic Cholestyramine works great for the diarrhea for me most of the time. I take codeine almost every evening for fibromyalgia and arthritis pain. So I know that helps too. Hope you get some relief soon!:)
 

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