LUPUS UK
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Gastroenterologist Appointment Review

Evening everyone,

The wait is finally over, I’m seeing my once private consultant tomorrow. (NHS) hoping to have an update on my dreaded colonoscopy, & results to previous tests. My dad is going in with me so hopefully we can get the ball rolling together. We need some answers, this has been going on for such a long time, I haven’t seen doctor S for a long while now & things have got much worse in regards to not being able to digest food.

Extreme weight loss, pain, & unable to eat has become a worry, mashed potatoes with soft carrots sit well.

I LOVE potato skins! Haven’t eaten them in a while, tried to eat the skin from my baked potato last night & I was in a lot of pain afterwards... I’m not sure what that means but I won’t be having them in a hurry.

I’ve got questions to ask, & I WILL be leaving his office with some kind of understanding & plan of action, I’ve been left in the dark for too long & I need to gain some sort of control in regards to my care. A lot has happened since I saw him last & I think tomorrow is a chance to start discussing a new direction as I haven’t got from A2B. I’m stuck..

Roll on 9.15am wish me luck 👌😀

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God luck Laura. Be thinking of you x

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Thank you Ludo X

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Good not God sorry

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Good luck laura. You sound very positive so im sure you'll get all the answers you need. Glad your dad's going with you. it's easy to forget something so it's good you have someone to help.

Just a thought but was wondering if it's the fibre in the potato skin that upsets your system. It can be hard to digest so its possible maybe?

Anyway best of luck today X

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Thanks so much Georgie-girl, Appointment went wonderfully I’ve updated below x

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Good luck I hope you get some answers x

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Aww thanks Looploo43 xx

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Good luck for today, I'm waiting on results as well, also waiting to get colonoscopy, dreading it, how did you find it. I'm dreading taking the kleen prep (vanilla), I hate vanilla. But if it finds out what is wrong I will give it a go. Keep us posted x

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Hey Lizard28, thank you for your message, I really do hope you get your results soon, the waiting game is wicked, I know.. 🤢 the prep is the only thing I’m scared about ! Yes your right, we have to go through it to find out, how are you feeling ? What sort of symptoms have you been having ? Xx

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Hi, my symptoms were being sick or nauseous all the time, constipation and diarrhea, fatigue, I just didn't know what I could eat, it started with prawns then all fish, I thought it was an allergy but after blood tests, they were all negative. I have lost around 2 stones now, but strangely I had a gfr of 53 which is still getting monitored, doc put me on vitamin d and calcium, b12 and folic acid as they were all low but considering my diet I wasn't surprised. Been on them a few weeks now and I have hunger pangs again and feel quite good, gastro doc checking that my body is absorbing these vitamins, I hope the next gfr test is up a bit or I could have stage 3a ckd. I'm just glad my gp noticed this as the rheumy doc didn't. I think at this stage it could be helped. Still ill at the thought of the dreaded hospital appointment popping thru door. I must stop reading the horror stories about colonoscopies, I'm on the verge of cancelling it, I am so uptight about it.

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Your symptoms sound very similar, I’ve always had GERD & excessive reflux, but the Scotch bonnet chilli has caused my motility disorder! & damage to my gut.

I can relate to loosing weight. I’ve lost 3 stone in the last 9 months.

Being deficient makes you feel so exhausted... I have serum folate deficiency anemia. Levels were 2.2. (Malnutrition) it’s very hard to eat. I was put on folic acid but didn’t feel any benefit my levels are still the same. Vitamin D & Vitamin B12 borderline. I suppose with not eating properly our bodies run on empty & everything seems to deteriorate.

I’m sorry to hear you have been suffering so much, it’s awful. I’m glad to hear that your body is absorbing all the vitamins.. I really wish my body would (dam thing lol)

I’ve had the basic kidney blood tests but not a GFR... jeez I really hope your lab results come back ok... 3a ckd.. (scary) !

Sounds like you have a good GP, & thankfully they noticed it. Things can be overlooked & forgotten sometimes which causes unnecessary trauma & suffering. Only takes a second to have a good look eh..

I’m going in on Monday 12th Feb for oral surgery. My facial surgeon has thankfully agreed to do the surgery under GA as there is ALOT to get through. I’m bricking 💩 I mean 💩 bricks 🤪I’m phobic & terrified!! I put up a post about what I’m having done so I won’t bore you with it but I can’t put it off as I have abnormal findings & the quicker I get it done the better..

but a colonoscopy is obviously 🙄 completely different I’m just speaking from a FEAR prospective. I’m going to hate both! I am dreading both! But.. big BUT hopefully in a months time I can look back & be proud of myself that despite being literally petrified to death I can live to tell the tale..

I’ve been in the unknown for such a long time, it will be refreshing to know what else is going on within me. My list is exhaustive & id like the opportunity to eliminate all causes & find a safe place to land.

It’s a struggle but we’re get there. Have you got a good support system? Family/friends? If you ever need to talk you can always message me. As you can see I can talk for England 🤓

Take care & keep me posted x

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Omg, I hope you get on ok with surgery, it's the getting me in the place that's the problem, my lovely hubby is supportive and makes me go, I've had a lot of procedures but I'm bricking this one. Post been, I can relax for today. All the best for Monday , will think about you, take care xx

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I’m sure I’ll be ok, I’ll be asleep which is always good in my books 😋. I’m a little worried about the aftermath but I’m praying it all goes to plan.

Lovely to hear that your hubby is supportive! Have a nice cuppa & a long exhale 😎let me know when the postman’s been... eeeek.

You seem like a strong soul to of endured many past procedures. Just remember your not alone we’re all in this together.

Take care of u too xx

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Be good to know how you get on.

I have this problem and have to tweak my diet regularly only eating easily absorbable foods for the last 18 odd years.

I suspect I have low gut bacteria and enzymes for a start and inflammation in the gut. I have had little help because I cannot take more trauma and invasive treatment and colonoscopies don't evaluate the gut flora and fauna - conventional system is rubbish at this problem.

I went to naturopaths and nutritionists, but hope you get somewhere with the NHS. I was only telling the lady on the end of the standard stool test line, that it is about time they tested the stools for other than just blood and polyps.

There are loads of indicators for IBD and possible other serious diseases e.g. calprotectin levels, eosinophil protein X, etc. She agreed, but sadly that is all they do and we get nowhere!

A colonoscopy is traumatic and picolax toxic. I do not wish to put my body through all that on top of what I have to deal with; I am sure it would set off a flare at the very least.

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Hey Cann,

Thanks for your message, I have update below. Finally have a long awaited diagnosis!

18 years !!!! 😱 excuse my shock face. How have you managed all these years ? Well done though! I’ve struggled to get anywhere with the NHS. My home towns system is somewhat negligent. My consultant said my CT scan was clear of IBD. But still have to have the colonoscopy for complete piece of mind.

My stools had a small rate of inflammation but he said it wasn’t anything to worry about. He only noticed the fecal impaction because my dad asked to see some of the 920 slices from the CT. he hadn’t looked at it but trusted the radiologists, if we didn’t ask we wouldn’t of known...

Ive read about Picolax 🤭 isn’t there anything less invasive like senakot? Or a gentler laxative. I’m not sure if I will be able to consume it as I’m nauseous most or all of time. (Emetophobia) the word traumatic < is somewhat terrifying! I asked if it would cause me more problems as drinking all that & having tubes up the.... 😵

Would surely irritate it more ?!

But I suppose In my case It has to be done to rule out anything else.

I mentioned the ANCA blood test that I tested positive for 7 months (negative) now. It’s seems to be only present in vasculitis & IBD.

my consultant explained there is 2 different types & another type that could indicate an underlying disease that’s causing these antibodies in my blood. Confusing I know...

I’m rambling... please let me know when you get your results. Which conditions have you been diagnosed with ? If you don’t mind me asking... Sometimes there is a link.. well that’s what I’ve been told. Thing is I have a few missing links to my chain, and I’m none the wiser.. I hope mine turn up soon.. ⌚️

Take care hun 🌠

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The diagnosis should not take so long to get with an efficient health service, but sadly that is not what we have here. I was appalled at the service I got and I went privately for my diagnosis because at that time I was still working and had money available.

I wasn't going to have picolax put into my system and the gastro-enterologist said he was willing to do it with a colon lavage if I could find a naturopath willing to do it. I found a good one, but he said he wouldn't risk using it on me and he advised me not to have a colonoscopy - that is how ill I was - 5stone 10lbs with no hair - like someone out of a concentration camp merely a skeleton. He said he felt I would not survive it, but I wanted to live. The colon has to be completely cleaned out and I don't know of another way.

I certainly felt picolax and the whole process could finish me off - it is traumatic and every trauma is recorded in the body - I found this out when I had shiatsu session and all past traumas came flooding out!

My doctor said he could not rule out Lupus, but the bloods weren't showing it at the moment.

I was diagnosed with thrombocytosis, anaemia, hypothyroidism which actually it is Hashimoto's thyroidism from another doctor diagnosing it and levothyroxine could have done more harm that good for me.

The private results were IBD; dysbiosis; allergies-rare Charcot-Leyden crystals found; high sensitivity to all yeasts and additional bacteria including citrobacter diversus, a potential pathogen; neoplastic risk - high LCA/DCA ratio associated with increased risk of colorectal cancer and more, but it was a thorough analysis in comparison with the NHS, who appear from the doctors I saw to not understand fully how our bodies work, but just diagnose to suit the drugs they have on offer - many of which cause horrendous side effects to me.

I now manage it all myself. If I do see someone, I go to complementary practitioners, but they charge so much and they haven't really been able to solve the gut problem.

As I said in another instance, I asked the lady on the NHS stool analysis phone line why they only test for blood in the faeces and polyps when calprotectin levels; eosinophyll protein X levels and LCA/DCA levels would be far more helpful for most of the population or those with inflammation at least. She couldn't tell me why, but I know why it is obvious - they don't like to heal you, just keep you on drugs - its all about money and power/control!

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Hi Laura been thinking of you and wondering how it went yesterday. Hope it was a positive consultation. X

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Hey Ludo, aww that’s lovely, thank you 🙏🏼💜

Yes a very positive appointment. It’s a bit of a late update but I’ve posted it below. I’ve not been well & have been eager to shout the good news from the rooftop.

Yay ! X

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My Very Best to you..I do hope that you will have some solid answers...good that your dad will be with you xo

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Thank you Leslieliesel

That’s a lovely message, I appreciate your kindness your words bought a smile to my face. X

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