Also new to the forum

Hi all, I'm also new. I found this on the web and read a bit before joining. I'm really impressed with the depth of discussion here!
I was diagnosed with UP 26 years ago and UC 23 years ago. (I'm now 53.) At that point I was hospitalized twice in several months, sent home on a lot of prednisone which I was on for about 1 1/2 years (had trouble tapering off the last little bit) and alzufidine..... Disease was all left-sided.
For the past maybe 12 years I've often had two flares a year, not horrible - late summer and midwinter. I don't if that's because those are stressful times in my job or what....(I work part-time.) I've continued Asacol, have sometimes used Canasa suppositories and Rowasa enemas with varied results, but what has always really helped me is Cortenemas.
My Doc has spoken to me for years about trying 6MP, but I've not wanted to go there. However, this past year the inflammation has been in the transverse, so my trusty Cortenemas (my husband and I call them "Charlie") have not worked as well. My doc ended up leaving the country suddenly and I was on the Cortenemas for months. Tapered down after 3 months and flared again due to travel - and am just now down to one per week, but things aren't perfect in there.
Four months ago I started VSL, and it's not a miracle but it seems to have helped some.....Last week I bought Ultimate Flora Critical Care and I thought things were going great until today (though maybe it was something I ate...? I'll see how tomorrow is.....)

What a great group, I'm happy to be part of it!

I take:
Asacol -16 pills a day
Metamucil - 2 doses a day
Calcium and D (for my bones)
Multivitamin (just for good measure)
Cortenemas, hopefully not for long
Canasa suppositories on the other nights
Wondering if Flax Seed Oil would do any good...?

Hi and welcome! I can't comment too much on the 6MP because I haven't been on it. I didn't know you could go up to 16 Asacol/day!

Yes, I was on oral prednisone for almost 2 years - gained a bunch of weight, got stretch marks, had the mood swings, etc - I would like to avoid that if I could.

I've just recently learned about it and I am so excited there's an oral steroid with less side effects! There are so many more things available now than when I was first diagnosed!
I start with a new GI in 2 weeks and expect I'll have my annual scoping (it'll actually be my 26th, argh) in the next month or so - so we'll see! I'm hoping the probiotics, etc. will clear me up by then. I'm ever the optimist, which sure helps in this illness!

Laura - Yes, I'm nervous because of the immune modulating thing. I'm nervous about germs anyway, and I work with the public a lot and kids a lot. But, if this doesn't clear up, I may just have to try it - as you said, it's better than living in a flare-state! It's just taken me awhile to get my head around the whole thing.

Hi songlady! Welcome to HealingWell!

I was nervous about starting Imuran a few years ago. I ended up doing lots of research and finally decided to go for it! I have found that I actually get sick LESS often or for a shorter duration than others because my guts (the main defense in your body besides your skin) were functioning better. I do also make sure to wash my hands very well and stay clear of people who are sick.

My doctor monitors my blood work - which I have done every three months - for any abnormalities. I feel that I am better looked after than many "well" people.

I also like probiotics and do best on Culturelle or Florastor. My doc mentioned taking them about a year ago and I was able to say "I've been taking them for a long time."

I hope you find something to get you into remission! Good luck with the new GI :)

Hi songlady,

Cortifoam is the only rectal med that does anything for me and many GI's over my 18 yrs of having IBD have reassured me that it's perfectly fine to take long term when necessary (I've been on it for as long as a yr before tapering off of it with no issues), because very little actually goes into the blood stream compared to taking oral pred, there are virtually little to no side effects using the cortisteroid foam (I've never had a single side effect when using it).

Just thought I'd also mention that probiotics can also be beneficial, there are many many threads about probiotics here, you should go through some of them and see what others are saying about them.

Great that you take fibre supplements daily, I have been for the last 5ish yrs as recommended by my GI (best advice I've ever gotten from a GI actually).

:)

Your history sounds like mine!

I was tired of it, did some looking online and found this site...and learned about Remicade.
I am doing fabulously on Remicade. I am around the public a lot too (I work in a place that has as many tourists as professionals) and so far am fine. I am not around kids that much.