Not again!

Hi there guys.

I was posting about 2 years ago. Sadly I'm back!

Long story - short.

Diagnosed at age 18 with UC - history toilet problems but I never knew what was normal until seeing a Doctor. Treated with Sulfasalazine and took three years (ups and downs) to resolve - finally with cortifoam. Moderate to 25cm.

Asymptomatic for 10 years (no meds) and a life as a professional and athlete.

Flare 4 years ago deemed as severe to 25cm. Treated with Sulfasalazine and 2g mesalamine enemas - also oral steroids initially. Took 2.5 years to resolve.

Mostly symptom free for 18 months (maintenance sulfasalazine). I say mostly because I had some symptoms similar but after a colonoscopy was told I had no indications of UC so it must be IBS. I have now learnt to discern the two somewhat (I've always assumed the IBS symptoms were UC).

Now in a nasty flare - identical feeling to 4 years ago. Prescribed 4g mesalazine enemas. No improvement so just recently steroid enemas as well (trying to do mesal at night and steroid in morning).

Have a doctor who is trying to treat more holistically with diet and naturopath - have read Russell Mariani and Adam (ihaveUc.com) books. Not getting anywhere fast and extremely frustrated.

I am happy to say that I'm lucky enough to be seeing Prof Borody (CDD Sydney for consult/colonoscopy in first week of May), so I'm trying my best to survive until then. Very interested about his thoughts and successes with FMT treatment. Along those lines I am receiving the first of the VSL#3 probiotics today (hard to get in Australia).

Really struggling with the mental aspect of this at the moment. It's all consuming and I find it hard to come to terms with - again.

May I ask those experienced a couple of questions please?

1) Is a need to have colon somewhat healed before they will do a Colonoscopy ? (ie tearing of tissue possible?)

2) How to best take VSL#3 ?

3) Has anyone here had Prof Borody treat them?

Thanks as always. I acknowledge there's always someone worse off than yourself, but I'm grateful for people's advice and always happy to hear the story of someone who travels/has travelled the same road we all do - I think its this kindred spirit that allows us all to communicate and this website is a wonderful support.

I think your GI doctor would know if your colon is able to be inspected. I had a bad flare up and was able to be scoped, they just need you to be emptied out of any food/liquid by the time you get the procedure.

VSL #3 is one of those things that works differently for different people. I personally prefer the tablets, but have heard the solution is stronger and would not hesitate to try and see if it works better for me the next time around. It is the strongest probiotic, though, so it should be pretty powerful and (hopefully) helpful no matter how you take it.

I would just like to say that if you get it in remission again make sure you always take meds, even if it is a lesser dose. Future flares always seem to get harder and harder to treat so the goal is to never have another flare. I would also like to say that I don't believe in IBS. That did that crap to me and I just don't believe it. You have UC, you get a clear scope with no inflammation but you still have symptoms then all of sudden you don't have UC, you're dealing with IBS. Bullcrap. I believe when this happens you still have UC, not IBS, it is just at such a low level that it can't be detected.