I haven't used these boards in years but I really need some advice and experience from others with j pouches.
Please excuse a bit of history! I've been quite unwell with awful fatigue for a long time and wondering if it there might be a gastro cause.
My pouch is about 20 yo, I had it done in my early teens following severe u/c. Between now and then I had some early episodes of pouchitis and surgery to divide troublesome adhesions but my pouch has otherwise been tremendously successful.
Since beginning of 2017 I've been on a low-residue diet due to a stricture-like kink caused by adhesions, which prior to adopting the diet was causing frequent severe obstructions. My surgeon has said it will be a very risky op to attempt to fix the kink.
In 2018 I was signed off work with severe depression and burn out. It took a while to recover and then I hit nhs delays due to pandemic etc. Mh is now pretty good but I still struggle with crushing fatigue, which is what we can't get to the bottom of. I'm not able to work at all.
My gp has now referred me to an ME/CFS specialist for diagnosis but while my fatigue fits a CFS pattern I'm not convinced it's the cause. I can't help but think that this may all stem back to bowel issues.
My bms are usually v watery these days, I definitely struggle to keep adequately hydrated but chug isotonics and have recently started liquid loperamide as I can take it a much lower dose. Very sensitive to standard loperamide these days and seemed to be contributing to stoppages.
It's not pouchitis. I've had a little cuffitis in the last few years and its probably worth checking if this is at play again - can it cause such severe fatigue?
I have an upcoming dietician apt because I think I might need ongoing nutritional support but when my bloods are coming back OK it's hard to know what to ask for.
I want to approach my hosp team for a referral to a gastro but would really like to know what to ask for when I get it.
Does anyone have any similar experiences? Any advice?
I've wondered about microbiome issues - lots of interesting research coming out, does anyone know if its being utilised in j pouch care at all?
Would asking about prebiotic treatment get me anywhere?
Sorry for such a long post - getting desperate!