Extent and severity of inflammation increasing in 3 year flare saga - where to go from here?

I'm constantly trawling through this forum and thought it might be a good place to get some experience-based recommendations on my current predicament.

I was diagnosed with ulcerative proctitis in 2012 and prescribed mesalamine suppositories which helped for a while. Flash forward to late 2014 when symptoms started up again - just a bit of bleeding and mucous at first - but progressed to severe pain, no formed stools, etc by 2015. Since then, I've tried a few different things: a 4-week prednisone plan that was stopped early due to hypomania (fun!), cortifoam + 1x mezavant daily, 4x mezavant daily, then 4x mezavant + 1x cortiment daily (my current regime). There have been breaks in my care due to moving, needing new referrals for another gastro, etc.

I started the current mezavant and cortiment regime in November and have seen little improvement: still have 4-6 bms daily (never ever formed), blood and mucuous, some pain, difficulty with a lot of foods. A colonoscopy just before Christmas revealed I have gone from 10cm of mild inflammation in February 2017 to 25cm of moderate-severe inflammation now. My gastro said he needed to "wait for some results" of the colonoscopy before discussing next steps, though he did mention the possibility of my being treatment-refractory. I was prepping a stool sample the other day and discovered the (very expensive) cortiment was barely dissolved in my stool - possibly why it hasn't been working?!

I'm currently in a panic spiral about what's next, at my wit's end with this never ending flare, totally freaked out about the possibility I'll never respond to any med. That said, I'm really worried about trying biologics because of the short and long-term side effects and, given my last prednisone experience, think I'd have to try and get some sort of work leave to be able to handle pred without totally embarrassing myself at work (the last time was truly awful).

Are those my only options? Are there other things to try before pred or biologics? Does leaving the inflammation happen (while trialing 'weaker' treatment options) just leave me worse off in the long run? Thanks for any advice, tips, anything you can offer!

I was at the point you are some years back, RX was just not controlling my symptoms and inflammation and I did not want to go to biologics. So I returned to diet modification very seriously (after getting slim results from it previously, nothing that said "this is IT").

I also tried virtually all the supplements and different treatments people mentioned here, some had small benefits, other stuff had none or negative. Still have quite a few bottle of stuff in cabinet and currently take no supplements for UC but still take Balsalazide.

Diet took me a long time to sort out but it has had more benefit than anything else and keeps my symptoms very low. Bleeding stopped a long time ago.

Should you give diet a try? Your choice. Try doing a few things and see if 30 days later you have fewer symptoms. Remove most fiber including fiber-heavy veggies, remove grains including wheat, corn, rice, etc, remove dairy. This will be a very hard 30 days of diet mod but IMO you will get answers.

Try not to "substitute" with other foods you may not know your gut likes. Don't add in almond milk for dairy, for example. Don't eat coconut ice cream instead of regular.

You can always quit this test at any time if you get worse or nothing changes at all. Up to you.
You could even start off with "low residue" to give your gut a rest and then decide what to do next. At least the holidays are over, makes things easier.

Good luck. Don't expect your GI to give any support. GI's dispense RX not diet.
The knowledge you gain, even to know diet is not affecting you, is valuable and you won't regret future RX decisions.

iPoop said...
What helped me was looking into the odds of risks versus benefits. The Crohn's and Colitis Foundation of America has a good risks versus benefits discussion that looks into the actual side effect odds.
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Thanks so much for sharing this. I find my gastro is often not very thorough in discussing these issues with me and I do want to be able to make an informed decision myself, based on evidence rather than fear (of the extreme/scary cases google can turn up sometimes). May I ask whether you've been able to achieve remission over your 5 years on Remicade? And is there anything you wish you'd known or would have been helpful to know before getting on it?

no one can tell you with any amount of certainty what will happen next - the only way for you to know is to just do it -

i chose a similar path to Imagardner when my UC quit responding to the treament i was using at the time - i honestly don't recall when i took my last med, but somewhere around mid 2013 - since that time, my UC has been very well controllled almost exclusively by the food choices i make -

will changing your diet be the answer for you ? i sure hope so !