what to do next?

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 mornings only (approx 3 bathroom trips).

I've worked from home the last few days in order to up my enema usage to twice a day.

I'm seeing the GI on Tuesday and would like to consider next steps as pred is not an option for me until I have run out of other options . I'm only prepared to take steroids when I'm running to the bathroom 10+ times a day with uncontrollable loose, bloody D.

Can anyone suggest what I could be doing now?

I'm going to buy some psyllium husk tomorrow. I've struggled to find psyllium seed powder ( anyone in the UK find this?)

At my GI appt I'm going to propose:
Stool sample (I can't see visible blood but believe there may be blood in the stool)
Taking allopurinol alongside azathioprine (imuran). Anyone know how long this takes to start working?

Worth suggesting flex sig/colonoscopy??

I also wanted reassurance as I'm not sure if I'm just making excuses and delaying taking pred??

fruitgirl said...
Have you ever tried steroid enemas? That'd be my next step, I think.

No, I've never taken steroid enemas, which is why it never occurred to me. Great suggestion, thanks.

pink1 said...
How far is your inflammation? There is a steroid foam (cortifoam) which I like better than the enemas. But it doesn't go up as far.

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 experiencing D. I'm going to see if it's possible to have a colonoscopy to see what the inflammation is like now.

pink1 said...
When was your last colonoscopy? You just had a flex sig in June? My UC has always been very low and I go b/w constipation and D.

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 weeks ago. Joint pain in hands/feet has started up the last couple of days..

I definitely think steroid enemas might be the way forward.

Dreadsteel said...
also switch to 4gm enema

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).

when I was first diagnosed cortifoam got me into remission. Its really easy to use and no problem holding it either.

Hope you feel better soon.

ceecee600 said...
sorry just read your other post, I see you already are doing the steroid foam. I don't know if you are using any fiber supplements which helped me also when the inflammation was confined to rectum.

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 the rectum.

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 infection or flare up. Consultant doesn't think it sounds like a flare since D hasn't got worse and is limited to mornings only (not how I would normally progress... Once I have D, this soon shoots up to bloody D 10+ times a day within a few days).

He was really pleased I'd increased my supps from the original nightly 1g, and that I've been using the enemas as much as poss. Also pleased to hear that I've ordered vsl3, and encouraged me to try psyllium seed powder/fresh tumeric.

I stressed I don't want to go on pred but if I do have to, I'd want the enema. He completely agreed that it's always better to treat topically whenever possible, which was very refreshing to hear.

So all in all, nothing has changed except I'll wait to see what the stool sample shows. I'll take the vsl3/psyllium seed powder and I'm feeling better if I end up needing to take steroids because I can take it via enema - thanks to those that reminded me about them!

Dreadsteel said...

StarGirl10 said...

Dreadsteel said...
also switch to 4gm enema

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 foam enemas, but i presume it doesn't make a difference since your problem is in a small limited length.

if its not too expensive ask for a Faecal calprotectin test this will show if your D is from inflammation, or diet/stress/infection problem.

if i were you i would look into my diet the past days (i.e some refined sugars can do that to me), also imuran takes 3~4 months to "Start" to show improvement

Doc is doing faecal culture test so I do wonder whether this will test for faecal calprotein also.

My diet has been low residue, and very bland the last couple of weeks since I started experiencing the D.

I'm on imuran already, and have been since March 2012