What's the aim?? Help!

Hi all

I'm at a bit of a loss as to what I'm aiming for. I have been flaring (proctitis, mucous, blood, urgency and bloating) and currently on asacol tablets 2.4g twice a day (I was on 1.2g once daily at the start of this flare), mesalazine suppository 1g at night and I have had two courses of prednisone 40mg for 5 days. I have seen a very slight improvement but basically still getting all symptoms. My consultant asked me to phone if I don't see an improvement after 2 weeks. Is a slight improvement sufficient, do I wait a bit longer? Or is the aim to be symptom free? Those of you in remission - do you get mucous etc still?

Thanks in advance for your help!

What you and your medical pros are aiming at is remission, trying different RX meds on you to see what works because we are all so different in what works for us.

Saying "it's not working" will help, denial was something I was in for a long time at the beginning of my UC.
No, slight improvement is not enough. If you have to ask yourself if things are getting better then they are not.

Yes your aim is to be symptom-free, don't settle for less. Even if you don't achieve 100% symptom-free you will be much better.

Best wishes. It took me a long time to get better, for some here it took surgery which is not a lesser cure.

There should have been "more than slight" temporary improvement after the pred. It won't last, but should have been there.

Over a couple weeks to a month or so, the mesalamines should more than slightly reduce symptoms. For some, this will be on the road to complete remission - but they only work about 64% of the time, and some of that 64% is partial management. I think the total remission rate for mesalamines is about 43% (need to check).

Each mesalamine pill releases a bit differently. It could be you are not getting full benefit because the release point/mechanism is not a good match to your gut and symptoms. For example Lialda needs time for pH of colon to eat outer coating. If you have fast D or odd pH, you will expel the pill before it opens.

Also, you have proctitis, which is least effectively treated by oral mesalamine. The suppository is going to have to do a lot of work. If you switched to an enema, you get more med and coverage. But, they don't help if you cannot retain. It could help to do a few weeks of steroid enema, then do the mesalamine enema.

Also because your improvement has only been slight, 1) repeated stool test for c-diff should be done, 2) you should try to identify any foods that seem to be hard on your gut (cause symptoms), 3) you should increase anti-inflammatory foods, and 4) you might try to IBS meds to see if you have IBS secondary to IBD. Over time, it could help to try different forms of mesalamine.

You should not do everything at once however. Your disease has your gut microbes out of wack, and they greatly assist digestion. Eliminating (for a while) any trigger foods you find (which, will depend on your gut microbe profile, but many start with gluten) can help D. Only reducing the inflammation is going to help with blood and mucus.

The picture is complex, and for many takes a while to hit on a good regimen.

It does sound like you should have had more than "slight" improvement. Failure to respond to pred is of particular concern. Getting the enema might be 1st recommended step.

Finally, in some treatment resistant cases, there is growing research showing the advantage of moving more quickly to aggressive treatment with biologics is better than slowly ratcheting up meds.

Read, learn, ask, think. Make choices.

good luck.

So just to update, my consultant wants to do a sigmoidoscopy and based on the results; discuss next steps regarding steroids/azathioprine. I don't think gluten is having an effect on me either way so I'm just eating normally. Typically, my symptoms seem to be settling down now but I am still having mucous daily and urgency. Is it worth postponing the sigmoid? I'm reluctant to because if I flare again where do we go from here, I'm already on max mesalazine. Just don't want to waste anyone's time.
Also, I may be reading too much in to things but I bumped into my bed earlier and have come up in a pretty big bruise compared to force of the knock. Wasn't sure if it was mesalazine related, anyone else have this or am I just being paranoid?
Thanks!

If you're still seeing mucus an experiencing urgency then I'd get the sigmoidiscopy.