Colonoscopy Report Pan Colitis

Hello,

I am fairly new to this site and have been in and out of it since I first got diagnosed with left sided uc in Sept 2011.

I have been having a bit of a tuff time of late with my uc and have received some great advice from people on here and since I had an Iron infusion about 6 weeks ago have been feeling the best I have for a long time. The urgency has now subsided I am able to go back to work and out and about with out much bother.

I have had no hard stools for about 6mnths and have been taking VSL3 on a regular basis(just managed to get this today on prescription from my GP, I Live in England) on the advice from people on this site, Thank you, along with taking 5ASA(asacol) going from 4.8g for 6 weeks to 2.4gfor the last three weeks maintenance dose as well as watching my diet.

Yesterday I had a Colonoscopy to discover that my UC has now developed to the whole colon and have been diagnosed with Moderately active, entire colon, (pan-colitis).

I have been prescribed Prednisolone 40mg to taper 5mg a week until I get to 20mg to stay at that for 2weeks and then tapper 5mg a week again to eventual finish as well as upping the 5ASA back up to 4.8mg for 6 weeks.

I felt really bad as I left yesterday as I am thinking that the UC is getting worse a little sedated and not really understanding everything that was being said to me.

Could this just be a really bad flare? or am I right to be concerned? I don't believe my symptoms are as bad as some people on here or am I in denial. Could the steroids clear this right up and put me back into remission? like I said I have had no hard stools but I feel the best I have for a long time no urgency which for me is the worst part.

I have read lots of articles on pan colitis today some make me feel better and some make me worry for the future. I am sorry to have gone on for so long but I don't know who to talk to.

Like I say right now today I feel ok. Thank you to any one who has taken the time to read this. All advice is greatly appreciated.

Many thanks
Bez

41 Male

Hello Db

I have been taking vsl3 probiotic along with phylum husk fibre as recommend no people on here what is butyrate? and is this something you have tried?

Bez

Bez, you probably need to stay on the max therapeutic dose of your oral 5-ASA in order to maintain a remission. The pred should give you a good start toward a healthy colon, but increase your Asacol.

I think you should probably remain on the max 5-ASA for much longer than 6 weeks. There isn't really a downside to this dose - bad side effects from 5-ASA are quite rare and your Dr can monitor you for any issues going forward. I would say that you shouldn't taper the 5-ASA until you have a clean scope. Your symptoms don't seem to correlate with the condition of your colon from what you posted (although your need for an iron infusion is a big clue that your inflammation was not gone).

Ok I see what you are saying now. My GP has always told me that I can only stay at this dose for 8 weeks max? I will continue to take this a the higher dose until I see him next and ask him this question. It makes perfect sense In what you are both saying and I think I would agree that a clear scope would be the best option before I tapered down the Asacol.

I have never had pred before this is my first time on it so hopefully it will work for me. I have has three flares since being diagnosed in 2011 this one being the worst and the one that has really made me start to look into my UC.

This scope is the only one I have had since being diagnosed in 2011 so i'm not sure how long it will be before I have another one should I be asking to have one every year? or if things appear to get better is there still a need to have one.

Thank you bez

@Bez - I was diagnosed with pancolitis years ago and never managed to reduce down from 4.8mg of mezavant. I've been in remission for a couple of years and I put this down my decision to start on immunosuppresants (azathioprine). I debated this decision for nearly a year and my opinion is I made the right call. This might be something you want to think about since you've not been able to get in to remission on your current meds.

Enemas are recommended frequently on this forum and I'd suggest adding this in to the mix. This should hopefully keep the lack of urgency in check.

I'm pleased you managed to get vsl3 on the NHS. My gp or hospital doesn't prescribe it..

Thank you all so much for the advice it really is a big help. I am going to continue with the pred my second day Now and up my Asacol (5ASA) to 4.8mg as suggested and see how I go.

Like I was saying the urgency has now subsided and I am not feeling to bad in myself just came as a bit of a shock on Monday when I was told I had pan colitis where as before it was only left sided in Sept 2011 actually watched the monitor as they did the scope and my colon looked very angry red and sore.

Was still a little sedated and only really heard my consultant say this only happens in about 20% of cases which as I'm sure you can guess got me worrying about things again. Read lots of different articles on pan colitis and some made me feel better and some a lot worse.

Having spoke to people on here and with some of the advice I do feel a lot more positive and hope to get myself into remission soon.

Things have improved slowly over the last 6mnths with the use of enemas and suppositories' as well as taking Asacol (5ASA) and the inflammation has been shown to be reducing from my blood test. However my Consultant was not happy with the amount of inflammation to begin with and suggested a scope to have a look. Now know its Pan Colitis.

So will give the Pred ago along with the Asacol and see how things go.

Thank you to all who have taken the time to read and answer to this post it really is appreciated.

Many thanks

Bez

Thanks Bez. I asked the gp a couple of years ago and they said they didn't prescribe it, nor did the hospital so I was buying it directly (£54 for 30 sachets inc postage). I stopped taking it due to cost but now I'm flaring again I'm thinking of buying some. I mentioned this to the gp and she commented another patient also buys it directly. I know pcts have phased out but maybe it's something to do with location? I will do a bit more research and ask her again why exactly she can't prescribe it.

@DBwith UC I am taking vsl I have had a look at Butyrate on the net and it does sound like a good supplement is it advisable to take it along with the pred or when I have finished the pred?

Do you take this and has it helped you.

Many thanks

Bez