I've tried both the GP and GI and can't get it covered as the NICE guidelines only recommend VSL3 for pouchitis. I'll admit to not taking VSL3 as regularly as I should have in the past but now I'm...
Hi Mia, I buy directly from the vsl3 website here https://www.vsl3.co.uk/index.php and it is delivered with a couple of ice packs to keep the package cool, when going through the checkout, you are...
Jane - are you in the UK? If so, might be worth trying a foam enema? I've never used liquid so can't compare between the two but I find the foam enema super easy to retain. Might help you as I don't...
I went through a period of feeling lazy also but have accepted I need what my body is telling me, albeit more sleep or cancelling on a night out because I'm tired...
I never spotted that on the website. Some UK members have been able to get vsl3 on NHS. I had no luck but worth trying to see if your gp/ gastro will prescribe it. I think you can get a little gassy...
Happychick - I saw my consultant today, fully expecting to discuss either increasing aza or going the allo route. He basically said he didn't want to go with either option since I seem to be doing...
The technical term is tenesmus and it's definitely a pain the the butt! Is this the start of a flare? Enemas and suppositories should help ease some of the inflammation. Proctitis is inflammation of...
Yes, in the UK. You're right, they only checked the ctherapeutic range as an afterthought as I wasn't doing so well. I'm under the care of a cardiologist and I've realised I might need the okay...
Thanks, when you posted that you were starting on the allo/aza and I remember thinking we were in a similar boat symptom wise then. I'm only on 100mg aza due to my tpmt levels. Iwonder whether...
http://www.crohnsandcolitis.org.uk/whats-new/nice-review-of-biologics-for-ulcerative-colitis-public-call-for-evidence Unfortunately I've just come across this and the deadline was 15 Oct. I'm sure...
Happychick - how you doing? I'm due to see my consultant on Thursday and will hopefully start on allopurinol. I'm a little worried as it seems to be that you got worse when lowering the aza? I've...
I was going to suggest that allopurinol could be an option to help you metabolise the imuran....
Hi, For the last week or so, I've just had no appetite. This is very unusual for me, I don't want to eat any of my favourite foods. I would normally be hungry when I reached work in the mornings....
I've been prescribed both buscopan, and mebeverine for cramps. Neither of which have done another much. See what the GI suggests for cramps. Since you're now on half term, I'd suggest resting when...
I'm going to guess you might be in the UK because assuming you're on half term from Friday? Even when in remission, try and stay on the supps or enemas once or twice a week. I do think this will help...
I'm in the same boat, I've been struggling with this stupid flare since May. I'm trying to get ahold of my GI as allo/aza is my next option. Completely understand how frustrated you must be feeling...
Would be great if you could keep us (I.e me) posted since allopurinal/aza is my next course of action when I have my GI appt in a few weeks time. Like you, my flare isn't too bad, just very up and...
I use the foam enema which only comes in a 1g dose per pump, so I've been taking approx 2-3g per day along with the 1g suppositories (supps taken 2/3 times a day). Good, i have no experience with...
Update - I saw the consultant today. He wants to do a stool test, checking for c diff and any other bacterial infection. No med changes I.e allopurinol/steroid enemas until we know whether it's an...
My most recent flare was classed as proctitis, with similar symptoms to you (except I didn't have very much blood). I was prescribed suppositories so pretty much stopped the nightly enemas (instead...
I was told it can take 6-10 weeks for the imuran/allo combination to kick in....
Thanks, I'm only on the mesalamine foam enema right now. I'm also planning to try psyllium seed powder to help with the D. I have a feeling the D means the inflammation has now spread higher than...
I use the foam enema which only comes in a 1g dose per pump, so I've been taking approx 2-3g per day along with the 1g suppositories (supps taken 2/3 times a day)....
My opinion is it's very likely the enema but, of course, do keep an eye out and monitor any changes....
I use the salofalk foam enemas and often get blackish blobs with stool or when evacuating the enema. However these blackish blobs are actually a very dark purple/black blob and are the enema. Do you...
My last colonoscopy was in Jan 2011, when I was diagnosed. I have only ever experienced D with all my flares, until experiencing constipation with current flare (flaring since May). D started up 3...
The flex sig I had on 30th June showed 6cm of rectal inflammation, so I was prescribed the suppositories to treat this area. I'm guessing the inflammation has reached higher, since I'm now...
No, I've never taken steroid enemas, which is why it never occurred to me. Great suggestion, thanks....
Hi all, I've posted over the last few months about my procitis flare that doesn't seem to be going away. New symptom - I've now been experiencing watery diarrhoea for the last 3 weeks, limited to the...
I've been on aza for over 2yrs with no problems. It took me about 6 months to with up the pros and cons before I decided to take it. I'm glad that I did. It kept me in remission for a year and a...
I would start the imuran when you come back from holiday. Some people find they have no side effects when they first start, I was not one of these people. I'd also suggest staying on pred while you...
Hi Karen, I'll echo some of the other posts and say that the pred dose is too low at only 20mg. The starting dose is often 40mg. I also find it slightly unusual that the dose is split throughout the...
Are you still on the foam enema, or only on the supps now? Someone will correct me but I believe one of the reasons you reduce down to 2.4mg is so that you can up to to 4.8mg if you start to have a...
Agree with the others, I definitely wouldn't be tapering down on the asacol just yet....
Thanks guys, I'll admit I had a little cry earlier. This just came out of nowhere and it freaked me out. I thought I was over this flare and this evening scarred me. I hate pred and couldn't help but...
Hi all, I've posted recently over the last couple of months about a proctitis flare I'm in. My flex sig showed 6cm rectal inflammation so was prescribed 1g salofalk supposities. I've been using these...
I've eaten it whilst in remission. Not much and not often though, as I'm not a big popcorn fan....
Completely agree with this. I've only ever done the foam enemas but don't even feel them. Although this is completely different when the inflammation is bad or there's some stool inside the rectum....
I second the suggestion of rectal meds. Personally, I think it's too early for you to decrease the meds just yet. I would give it a few more months before lowering, but that's just my opinion. I...
I've just re-read your post and noticed you mention that the urgency is very bad. Are you on any rectal meds? If not, I'd definitely recommend them as they should help with the urgency....
I did have side effects about 10-14 days after starting aza. I started on 50mg, then increased by 25mg at a time until I got to my current dose of 100mg. I experienced dizziness, headaches and...
Yes, lots of possibilities and 2 boxes of supps to start with... :smile: Don't think it'll be a prob to get liquid enema but I'll have to wait until my next appt which is in a few weeks. Supps and...
Great, thanks Quincy. I had been wondering about asking for the liquid enema. Yes, 1g supps. I'm in the UK and have the good old NHS so cost of meds isn't an issue. I want to try and treat this...
Thanks Quincy, I'll update my sig to add in enema dosage. It's the salofalk foam enema which gives 1g with each pump so I've been doing 2g nightly for the last 2 months. A recent flex sig shows 6cm...
Hi all, I started with salofalk suppositories earlier this morning to treat a stubborn proctitis flare. I'd been using foam enemas but my GI thinks these have been bypassing the inflamed area. I have...
I consider myself in remission when I forget I have UC. When I'm pretty much symptom free, not worried about diet, forget to look in toilet bowel after a bm and nor do I worry about where the nearest...
That feeling of not emptying out is very common for most people when flaring. It is rectal inflammation causing him to feel that way, The embarrassment factor can be difficult but for most of us with...
I agree with Gary, I'd increase to 4800mg mezavant and would definitely trying adding supps as well. Think you're in the UK? Do you have a prepayment certificate for prescriptions? Great if you do...
Thanks! Thanks Ewa, that's good to know. I'm in the UK and have a Polish friend going home for holidays soon... I'll see if she can bring me some back....