Oh Noooo! Sympathy and suggestions please. - LUPUS UK

LUPUS UK

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Oh Noooo! Sympathy and suggestions please.

Lupiknits profile image
37 Replies

I’m due to have a colonoscopy on Tuesday and am not looking forward to the prep for it.

Yesterday I had an incredibly swollen stomach: 6 month preggers size. I had a suspicion what might happen. As the evening went on I was uncontrollably dribbling watery poo, which has never happened before. Yay for the hugely absorbent Tena Ladies prescribed for urinary urgency.

During the night ( it’s always during the night) I woke up in a small lake of diarrhoea. It was too much for the Tena and the incontinence pad I lie on if suspicious, as I was last night. Soaked through one of the single duvets I lie on for comfort.

Raynaud’s and washing myself off when the heating isn’t on is jolly unpleasant.

Now the washing machine will be on all day, and I still have the prep to start on Monday.

My nether regions are very, very, sore. I used some very gentle baby wipes, but the diarrhoea seemed quite acidic which is extra unpleasant. I’ve slapped on every mum’s standby of Sudocrem.

Any other suggestions? Just a shedload of sympathy will do x

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Lupiknits
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37 Replies
Barnclown profile image
Barnclown

😟 Oh Lk....really no fun at all‼️. Wish i could’ve been there to help‼️ Glad you posted...when we first have to cope with this sort of thing it can be so confusing and horrifying, and if there was more sharing maybe it’d be less traumatic...sometimes i feel like i’m looking after a messy BIG baby, ie ME and i’m not v quick at figuring out how to cope cause have not been able to have offspring, so no experience ...finally i’ve got into a drill, Involving the sort of thing you’re describing: ARGH🤦🏼‍♀️

Anyway, am asking myself the same questions re bowel prep for endoscopy clinic, cause that’s in store for me too, yet again...so will be following your thread. For protection during previous bowel preps my main defense has been LOADS of vaseline & LOTS of towels, nappies etc + bidet bathing in Emulsiderm emollient solution + Anulsol products A Go Go 💃💃💃💃🤪

Take care & good luck 🍀❤️🍀❤️🍀❤️ Coco

Lupiknits profile image
Lupiknits in reply to Barnclown

Phew! Got all that! Yes, it’s like being a big baby, but I do know the drill by now. One thing it makes me realise is that colonoscopy is a blooming good idea. Bad things going on down there. If not constipated like a rock, then this.

Hahaha now following dear old dad’s advice never to trust a f**t 😂

Barnclown profile image
Barnclown in reply to Lupiknits

🤣🤣🤣🤣👍👍👍👍👏👏👏👏😘🤞✊✌️🍀

PMRpro profile image
PMRpro in reply to Lupiknits

That at least made me laugh. Otherwise - big virtual hugs.

honeybug profile image
honeybug in reply to Barnclown

Great reply Coco

Love you sweetie 🤗♥️🥰🙏

Barnclown profile image
Barnclown in reply to honeybug

😍🌟💐🍀❤️

honeybug profile image
honeybug in reply to Barnclown

xx

suzannah16 profile image
suzannah16

bepanthnen [or something similar] it's for nappy rash and gets rid of the stinging pain almost immediately. sudocrem is just slimy. 30 years of colitis experience :) I have a stoma now but can sympathise with 2am showers with no heating, I still get bag leaks now and then at night.

Lupiknits profile image
Lupiknits in reply to suzannah16

That’s sent for on Amazon ( paying for Prime is well worth it when you can’t get out of the house)

My mum had a colostomy so I know how that can be x

honeybug profile image
honeybug

Sooo sorry Lupi

🤗🤗💗💗😘😘🙏🙏😊🌿🌸🦋

Krazykat26 profile image
Krazykat26

U have my sympathy LK sounds like you're really going through it n this investigation needs to be done!! I will be thinking of u on Tuesday n I'll be holding your hand 🤝🤗xx

Shed loads of sympathy from me LK.

Mind that you insist on max pain relief to be given well in time and also for sedation to be given in time if you’re having it. I was given minimum allowance of pain relief and the sedation only kicked in afterwards.

My friend with Addisons and Sjögren’s just had one and had to stay in overnight before due to Addisons.

She said the Kleen Prep only worked half way through the night so night spent it in a hospital toilet. Then she had same experience with minimal pain relief to mine. She says she wished she had listened to the wise one (me) now instead of telling me how very brave she was lol!

That said I’d still have another colonoscopy over the gastroscopy I’m to have on Valentines Day! Xx

PS re poo in bed - not great I admit. But - given it was your own fecal matter - still marginally better than waking to find the dog has puked all over the duvet as mine did the other night!?

Lupiknits profile image
Lupiknits in reply to

Well, yes, the bonus is it all belonged to me!

My experience with my first endoscopy was that they either forgot the sedation ( no painkillers, they said you can’t feel biopsies, but I beg to differ when ulcers are there) or the sedation was simply not enough.

On Tues I’m opting for gas and air so that I don’t have the faff of someone in the house with me for 24hrs. However, they are ready with the painkillers and sedation if you change your mind after 5 mins. Should that happen, I hope it works better than before.

I’m sort of hoping my BuTrans may help with pain.

I’m expecting the prep to work through the night. Bound to!

in reply to Lupiknits

I really hope it’s a very tolerable investigation for you LK and that all the worrying (based on past experience) proves unnecessary. My Spanish hero Gastro has promised me the max sedation and pain relief he’s allowed to administer. He’s doing it himself so 🤞🏽🤞🏽🤞🏽

Downside of being upside is that entinox not an option but for the bum end it’s a great idea! X

Lupiknits profile image
Lupiknits in reply to

At least I can try the entonox then scream for everything else if needs be!

in reply to Lupiknits

Hopefuly you won’t need to but good to have all eventualities covered at least 🤞😏😎

HazelW profile image
HazelW

Never mind shedloads - I'm sending you mansionloads of sympathy !! I had a similar diarrhoea experience once but that was down to a bug I picked up from one of my grandchildren. Otherwise I've been quite lucky compared to some of you on here. Do hope things improve very very soon ! Loads of sympathy winging your way !!! 😣😓

panda2 profile image
panda2

Much sympathy and empathy for that colonoscopy Lupiknits. I had one last year, opted for the sedation and still needed the gas and air. There can be some tight nooks and crannies. The prep is awful, as all report. But it's doable, though, boy I can imagine how it might feel more intimidating after a night like you had last night. Ugg... So sorry. My sister sent me something called 'Tuks' from Canada, which are little cooling pads of witch hazel. Not sure if there's such a thing here, but glad you've had lots of other suggestions. Do tell them on the day that you've got piles/are very sore. They gave me a topical Instillagel with lidiocane to numb the area. That made the beginning painless.

Fingers crossed for you. Panda x

Lupiknits profile image
Lupiknits in reply to panda2

Thanks for the numbing idea. I’m sure they’ll have people very sore in that area. I don’t think I have piles. At least, I didn’t before this.

If pethedine is on offer you’ll hear me cheer. My first labour was long and complicated but one shot of pethedine had me giggling for 17 hrs! I could feel the pain but didn’t care. Midwives were actually popping their heads around the door to see the “pethedine lady”. I looked forward to it with my second labour but number two son shot out too fast for anything.

SLEepyhead123 profile image
SLEepyhead123

I prepared with babywipes, sudocrem used before things started happening. I had my tablet and kindle and basically spent the day on the loo. For the night and trip to the hospital i wore adult nappies in case of an accident. I had gastroscopy then colonoscopy. Was given popofol so no memory of the first procedure but when topped up with more sedative my oxygen levels dropped so i was awake. As a nurse i found it fascinating to watch on the screen my own insides. Some people choose not to have a sedative at all, it was mildly uncomfortable when the gas was puffed in but not unbearable.

All my results were normal apart from chronic gastritis as i have GERD.

Wishing you lots of luck and please let us know how you get on. Last thing to say if i had to have it done again i wouldn't be worried at all. 💜💜💜

Lupiknits profile image
Lupiknits in reply to SLEepyhead123

Very reassuring reply x

panda2 profile image
panda2

Ha ha! Here's to pethedine then. Surely a colonoscopy is much easier than birth.. You've already endured much worse, I'm certain. p x

Lupiknits profile image
Lupiknits in reply to panda2

Haha, when asked where I am on the pain scale I generally say “As bad as/not as bad as / nothing like having a large-headed 9 and a half pound baby without so much as a paracetamol”

Asked what the worst pain I’ve ever had is, the answer is that baby! So maybe I’ll be OK

panda2 profile image
panda2 in reply to Lupiknits

: ))

eekt profile image
eekt

Wish we could have sent a squad round for the clean-up LK, bad enough having the kind of thing you really want to serve up to some doctors...even worse dealing with consequences 😙...immense sympathy, I'm in the elasticated-waistband trousers squad...if Blue's in retirement, how about training up an alert hound? 🐺 Will be thinking of you Tuesday xxx

Lupiknits profile image
Lupiknits in reply to eekt

Love the idea of some sort of hound that somehow indicates urgent action needed.

Elastic waistbands for me - or the jeans I’ve undergrown. I don’t need to bother with the button and zip on those. 😂

eekt profile image
eekt in reply to Lupiknits

Medical detection dog* applications far outnumber available hounds at the mo, but any four-legged friend can learn to be a first responder...my silent sighthound would bark at me if I was behaving oddly eg sitting down to eat her Gravybones when hydroxychloroquine gave me a hypo, and she ran to get help when she lost me one time 🐺 ❤️‍

Well, looking at the positives, at least the prep won't have so much to do...here's hoping they have pethedine for you 😙 xxx

* medicaldetectiondogs.org.uk...

Lupiknits profile image
Lupiknits in reply to eekt

What a hound you have!

eekt profile image
eekt in reply to Lupiknits

She left for the happy hunting ground, but her spirit has stayed with me! 🐺 ❤️‍ xxx

Lupiknits profile image
Lupiknits in reply to eekt

They always do ❤️ x

Shorthouse profile image
Shorthouse

Just what you need a tummy bug before a colonoscopy .make sure you tell them .you have probably already cleared it all out?sorry don’t joke .x you are going to be really tired.maybe change the day good luck and lots of sympathy

Lupiknits profile image
Lupiknits in reply to Shorthouse

Not a bug I’m afraid - just one of the reasons they want a good look x

DRunnerchick profile image
DRunnerchick

Lupiknits, I had a colonoscopy and the prep went splendidly (as much as it can). I used A & D ointment from the $1 store. It was cheap and easy. Kept my bum from catching 🔥and kept it in good shape pre scope. I wish you well!

D🏃🏽‍♀️

Lupiknits profile image
Lupiknits in reply to DRunnerchick

Thank you !

wallock profile image
wallock

I was diagnosed with microscopic colitis two years ago. They have to take biopsies as you cant see it with the naked eye. Was given Budesonide which was great and gradually my bowel has settled down on its,own although I take a gastrostop every three days or so when things get too loose. The colitis was triggered by Leflunomide and finished off by Lansaprazole. I have lupus and now on Methotrexate and Xeljanz whichis working well. I hope they find something treatable and you can have a better quality of life. I had one horrendous night waking up in bed in pools of poo and can still hear my poor husband retching as he helped clean up. At that point I was admitted and old the surgeon there was no point in sending me home once again till they found out the problem. Things moved on then. My advice is keep at the doctors, it’s what they’re there for. Good luck tomorrow.

Lupiknits profile image
Lupiknits in reply to wallock

Thank you so much x

Angelann69 profile image
Angelann69

Take some pancreatic enzymes. This will help. If your doctor won't prescribe them then they do carry smaller doses in health food stores. I use them because I have EPI Exocrine Pancreas Insufficiency and if I don't take them then I have a terrible time getting the poops under control. Good luck with this. I believe it will help you.

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