Crohns / ulcerative colitis sufferers

No need to apologise, this thread generally isn't for the faint of heart, even if we are all faint of colon/stomach/anything else!

I have a follow up with my GI consultant on 8th June so will lobby him for a good prescription if the enemas haven't sorted me out by then. Though early signs are quite good.
 
Hope they work for you mate. I’ve not tried the foam but I hear they’re good.

Enemas are very good for me, but can be quite uncomfortable sometimes, I think foam is a more pleasant experience (as pleasant as squirting medicine up your bum can be that is).
 
After my last OPD check up, the nurse suggested a full suite of exams to assess my current status - colonoscopy, Adalinumab levels, stool tests, MRI, etc. This is very welcome. I am pretty certain the last few months, I am not digesting as well I could have, bowel movements are bit harder (I never have diarrhea generally), bloated most of the time, which all makes me more lethargic than normal. It does feel like something's gotten worse recently.

I've been on the same treatment plan for 5 years btw.
 
After my follow up with the consultant today, I'm being taken off Methotrexate and being put back on Mesalazine to see how it goes as a trail on a higher dose then I had before. So that's a huge relief for me as I really wasn't too happy taking auto immune suppressants and having to go for regular tests to ensure my liver was OK with all of it.

So I am see how I fair on these for the next few months and if things go down hill again I am to go back on the Methotrexate. However, my consultant is very happy with my progress.
 
After my follow up with the consultant today, I'm being taken off Methotrexate and being put back on Mesalazine to see how it goes as a trail on a higher dose then I had before. So that's a huge relief for me as I really wasn't too happy taking auto immune suppressants and having to go for regular tests to ensure my liver was OK with all of it.

So I am see how I fair on these for the next few months and if things go down hill again I am to go back on the Methotrexate. However, my consultant is very happy with my progress.

Thats good news mate...Hope it keeps it at bay for you
 
My niece (14) has just been diagnosed with this, and my brother and sister in law are still trying to come to terms with what it all means.

What started out as stomach cramps, and then moved to weight loss and then to the passage of blood she is where she is now.

I am going to need to go through this thread to try and educate myself on all of this.
 
I’m starting my tapering off the steroids now. I’m down to 30mg and so far all is good. This time they worked fast and pretty much put me back to normal within 2 days. Thankfully the horrible cramps stopped too.

Going to taper a bit slower than I usually do this time to try and stop any rebound but tbh I think I’m going to have to go back on the aza or something similar as I doubt my Asacol will keep me in remission when the steroids are removed.

The docs want to see how I go coming off the steroids and work from there.

All good fun....... Not....
 
Going to taper a bit slower than I usually do this time to try and stop any rebound but tbh I think I’m going to have to go back on the aza or something similar as I doubt my Asacol will keep me in remission when the steroids are removed.

The last time I had to take steroids I tapered really slowly especially right at the very end, 5mg for 2 weeks then 2.5mg for 2 weeks then 1mg for 2 weeks kind of thing, ide had a helluva flare & was on egg shells so didn't want to rock the boat, I don't know if it helped or not but I thought it did, & I think where my heads at is half the battle for me or so ive noticed, ymmv obviously. :)
 
I have to taper slowly at the end too.. Going down to 5 then 3 then 2 then 1mg. However what else I found to help was the pred foam enemas 1 at night for that last 1 mg week..Just in case.....
 
I had a consultation the other day with GI specialist. He was the best guy I have ever seen, interested and listened well, extremely knowledgeable, open minded for discussion, and funny. All of which are very important when dealing with this sort of disease! Makes me wish our system (NHS) meant you could stick to just one guy, but I get why it has to be how it is. A real breath of fresh air compared to some of the guys I have seen.

Anyway I said my 4.8g Asacol isn't really getting me back to full remission, and I wanted to try clipper again. He said he wanted to try Budesonide, and while that is working, do a colonoscopy. As I'm in semi remission and it's only 18 month since my last one (without a bad flare in between), I was reluctant, but he did a good job of convincing me, so that's now booked in for July. Meanwhile I've started a 9 week course of Budesonide (3 pills/day for 3 weeks, then 2 pills/day for 3 weeks, then 1 pill/day for 3 weeks). Has anyone used oral Budesonide before? I was a bit sceptical as I've just tried a course of enema based Budesonide without any noticeable change. But he assured me the oral pills will be much better. Just hope he is right.

Regarding Clipper, he called the hospital pharmacy to see if they had it but they couldn't say when they'd get it in, and he wasn't familiar with it and said without knowing what dosage to use he would rather do the Budesonide. This was the only downside, but he said that if the Budesonide doesn't work then for sure we can give the Clipper a go after that. Just 9 weeks to wait potentially.
 
Hope it gets sorted for you..

I've not used either of those two you've mentioned so I can't really comment.

However and probably strangely I look forward to my oscopy's I like to know whats going on....
 
I've have budesonide (entocort) a few times, seemed to do the trick. I quite like the fact it is targeted so can be given at a low dose rather than a general steroid like pred which I've heard plenty of people get side effects with.
 
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