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Reply to "Really need some advice"

Hi all,

Thank you SO much for your replies, I've been reading every one and apologise for taking time to respond. Honestly, last few days I've been too tired to write and have been focusing my energy on following up on some of the advice here.

At the beginning of the week I spoke to the colorectal nursing team at the hospital who agreed a gastro appointment was needed and were please I had a dietician apt. I emailed my surgeon to request a referral and am waiting to hear back.

Have just had my dietician apt and wanted to reply to you all while feeling alert and the plan is fresh in my head. She thinks my diet is well balanced, especially given the low fibre diet I'm on, and wants to focus on hydration to start with. I'm to have 5 sachets of rehydration salts a day - not even going to pretend not to grumble about this - I thought 1 a day would be bad enough, revolting stuff but I suppose a small price to pay!

I'm going to look up the other electrolyte supplements you've recommended so I can ask about trying them if I'm not getting on with the ones they want me to take.

I've also bought a load of supplements which I ran through with the dietician and she's happy I continue to try -these include a chewable probiotic.

I have spoken to the gp about the possibility of another autoimmune disorder but testing is coming back ok. Among the tests I've had this year theyve tested for coeliac disease and I specifically asked for a b12 check, which was OK. They've agreed to check for Lyme disease as well so I should get that done next week, although I've never had any reason to suspect this the Dr was really understanding about wanting to rule it out given its a simple test. I've not heard of autonomic dysfunction but shall look it up.

I had a pouchoscopy at the beginning of the year which should my j pouch was healthy, but I'm expecting that if I get the gastro referral the first thing they'll do is arrange an upper endo.

I am so grateful for you all taking the time to respond and offer advice and tips - I really can't tell you how much. I've felt so lost and frustrated this year, wish it had occurred to me to post here earlier. I'd also forgotten how good it is to speak with people who know and understand what living with bowel surgery is like!

Also - I did request they check my electrolytes earlier this summer because I once got really unwell with an imbalance when I had a stoma. That blood test came back OK, so I thought this train of thought was a dead end. It was only a random comment a couple of weeks ago which reignited it and speaking with you and the colorectal nurses I feel more sure than ever there's a strong bowel link at play.

...which is wonderful because for the first time in months I feel hopeful and positive that the fatigue can be treated, rather than clutching at straws.

I shall pop back later and make sure I've not missed replying to other points you've raised but thank you so, so much for your help so far.

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