Anyone with Advice?

I was in your exact position two weeks ago.

1. I saw my doctor and "demanded" they start me on cortisone enemas
2. I started taking probiotics
3. I started taking psyllium husk powder
4. I kept taking the Asacol

I am 90% better now. Everything is coming out...normal!

Forget the clinical study. That's only for their benefit. You know what works, you've done it in the past. I wouldn't take the risk of getting worse for a study.

Good luck,
John

Wow, I wouldn't try anything different before you go overseas. Are you needing inoculations as well?

Use what works for now, apply to be in the study after you return and add fibre supplements, probiotics and Vitamin D to your intake.

Welcome to the forumn!

quincy

Yeah, now might not be the time, if you have any anxiety about traveling.
Have you considered Remicade? I'm expecting no more flares again, ever! After 25 years of juggling the same as you...

I participated in the 5-ASA study (asacol) more than 20 years ago. I think I did more than just the docs good with that.

It's a suggestion, sheesh....

I changed my siggie just for you 

q

Thank you all for your helpful advice. It seems the re-sounding advice is not to go for this clinical trial which, to be quite honest is what my gut feel is telling me! I will definitely be cancelling my appointment on Thursday!!

Gee, I am so happy I've found this forum. I was 22 years old when I got diagnosed with UC and I have spent the last 18 years feeling very alone with this, at times, debilitating disease. Unfortunately, I am a very private person when it comes to things like going to the toilet etc. so I try to keep a lot to myself. Even when I'm having a flare-up, I will do my utmost (and use all the tricks I know) to hide the fact. Nobody, not even my husband, understands the full implication of this problem. It is therefore such a relief to be able to discuss and learn from other people's experiences who are suffering from the same condition. So, thank you once again!

Just as a matter of interest, I have heard that cayenne pepper enema's are quite beneficial to stop bleeding. Has anyone ever tried this? I'm too scared to try at this stage because Cayenne Pepper sounds like it could sting like crazy!!! I see a lot of people on this forum take quite a few natural supplements which is not something I have ever done. What would you suggest the most essential supplements should be. I am not very good at remembering to take loads of tablets but maybe I'll be fine with one or two essential ones.

I second (third? fourth? lol) the suggestion for the 5-ASA retention enemas!
I think my most important supplement would be probiotics. There are lots out there and different ones work for different folks. I am coming out of a year-long mild-to-moderate flare (long story and a change in docs is why it lasted so long) and basically have no blood, but if I have a day seeing blood I double the probiotics and that seems to make the bleeding stop.
I also make my own "24 hour yogurt" - I leave it to brew 24 hours to increase the bacteria and kill the lactose - and if I eat more of that, it helps. I find it quite tasty, even unsweetened. I've also used commercial kefir some. It tastes similar to my homemade yogurt but a bit more tart. You might be able to get that oversees....

A pepper enema sounds really, really crazy to me.
Please don't try it. Imagine the damage it could do it you have bad information.

I think probiotics make the most sense, among the supplements. Get the good, refrigerated ones.

(can you go into your profile and do a signature that shows what you take now?)

Ha, ha - yes, I agree - sticking cayenne on an already inflamed area does sound rather damaging! I won't be trying it but I'm glad I have other people's viewpoints. I think it's a case of desperation - one is willing to try anything if it works - although in saying that this whole fecal transplant stuff that I've recently been reading about really turns my stomach. When I first read about it, I thought the guy needs his head read!!! But now I see it appears to be quite common. Ughhh - somehow the thought of scooping a bit of my hubbies poop into a bottle and reinserting it up my bottom is just taboo for me.

Thanks Peety I'll be looking into those refrigerated Probiotics you suggested. I've finally managed to fill in my profile regarding my meds. Ha, ha - I was wondering how everyone did it - sorry, I'm new to this forum so am not too clued up on how everything works.

     Cayenne pepper???  Why not just stick a red hot chili pepper up there...hehehehe