Hi Guys,

Not been here for a while as been doing very well.

I am now back with my loop ileostomy for 2 years due to continued pouchitis problems.

Over the last week I have been passing much more mucous than normal & it now has some blood in it. There is a definite need to dash to the toilet every 30 mins or so.

I am getting married next week, so any advice as to how I could imrove things would be greatly received. Wont have time to see my consultant, between now & the wedding, but could see my own doctor if any medication is indicated?

Thanks

Ben

This is normal and I'm not sure there is anything you can take or do to prevent it.

Sue

i'm sorry i don't know what to tell you just wanted to say happy wedding! sorry you are having to deal with this. i would call my doc... good luck!

Perhaps you may want to use Depends or something similar that day so you avoid any accidents (or at least ones that could be visible).

I suspect the problem is likely fairly normal it's just the timing that is lousy!

Hope the day goes well!

Lew

Thanks for taking the time to reply guys I really appreciate it.

Only a week to go now, so hoping things will settle down for the big day

you could have diversion pouchtis. And there are things you can do about. small chain fatty acid enemas... though that ddin't work for me. or rowasa enemas daily.. that one helps. If you can get the rowasa right away a few days of it might help you.

I haven't used them in years (and they didn't work too well for me during a flare) but what about steroid suppositories? They might make things better quickly.

Happy Wedding!
Erin

Frequent cleaning of illeostomy bag should help too...

Frequent cleaning of ileostomy bag should help? What does that have to do with anything he's saying?

I've had my end ileo now for about 12 months and I was doing perfect until a few weeks ago when I started getting a LOT of yellowish discharge from my rectum with some blood as well.

What ended up working for you? They're talking about small chain fatty acid enemas as well .. not sure if that's the correct route to go or not.

In response to UCfree, had a lot of problems with discharge in between steps, with urgency to run to the bathroom at times. While some mucous discharge from the rectum is normal, I also had bleeding and quite a bit of mucous, which ranged from pinkish to yellow/white. Turns out that UC never went into remission in the rectum the entire time I had the end ileo. In that case, if you're getting bloody discharge, it's very possible you're having a flare in what is left of your rectum. My surgeon prescribed cortifoam to try to calm things down, and I noticed an improvement within a couple of days. An alternative is entocort enemas, but cortifoam stays in place better and is much less messy.

Spooky,

You are probably on the money with that. My UC was always more prominent in the retum area and when I had my reversal, I had a LOT of problems with the JPouch and I was constantly on antibiotics to battle pouchitis. I always thought it was more than just pouchitis that was the issue.
Now that I am off the meds and diverted, it seems to be back and it's VERY painful when it's flared up. Luckily I don't have to worry about rushing to the bathroom because of my ileostomy but it is running me down and I am tired and lethargic all the time .. just like the UC days.

I'll see if the doc wants to do the cortifoam enemas and give that a shot .. any more suggestions would be welcomed.

thank you

ucfree,

Do you know how much of your rectum is left? Even just a little bit of rectum can cause trouble. In my case, my surgeon told me I had only about 6-8 inches remaining, but it was enough to cause me big problems as it was in constant flare (lethargic, eye problems, mouth ulcers, anemia, etc). The cortifoam helped mute the symptoms but I never entirely went into remission, and wasn't free of issues until the surgeon removed the final part of my rectum during step 2.

I would definitely ask about the cortifoam. I would think that perhaps Canasa suppositories might be another option, and of course prednisone, but obviously you'll want to avoid the latter if you can. But the cortifoam did give me the relief I needed. I didn't have to use it constantly, either. As per my surgeon, I used it daily for 3 weeks, and thereafter only when the symptoms flared up again.

Not sure how much of my rectum is left
I'm not gonna go the prednisone route ... took too long to get to this point .... to get off the steroids
Tried Canasa, and putting them in is so painful!! then they don't stay in ... and I start bleeding. Any suggestions?

You may already by trying this, but a dab of KY jelly (or some similar lubricant) makes a world of difference in inserting canasa.

If your remaining cuff seems to be the whole issue, has your Doctor talked to you about a mucusectomy?

This is where they scrape the remaining cuff to remove any living tissue, thereby removing the old uc. They usually remove as much cuff as possible and advance your pouch connection lower and hand sew it. I had this done due to rectal cancer but have heard it is done to relieve cuffitis.