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  • My treatment has been delayed because of the Coronavirus - What can I do?
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Living with ulcerative colitis

My treatment has been delayed because of the Coronavirus - What can I do?

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avatar CEASER06

CEASER06

20/04/2020 at 08:24

avatar CEASER06

CEASER06

Last activity on 20/04/2023 at 20:04

Joined in 2020


4 comments posted | 4 in the Living with ulcerative colitis group


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Hi thanx for letting me join the group.

Can someone give me some advice   just before the coronavirus outbreak  I was told by my doctor that the cause of all my pain and gastric problems was probably caused by ulcerative colitis.

I was due to have a colonoscopy  but this was cancelled due to the coronavirus.

My doctor says there is nothing they can do as the nhs are very busy.   Which I completely understand    thing is I am in so much pain  I've lost 5 stone  and can only drink food supplements  as food makes my pain worse.

I've been on every painkiller   tramadol  nefopam  gabapentin  pregabalin and morphine  but nothing worked for the pain.

I'm scared and worried that this ulcerative colitis will get worse without any medication.   But until I've had my colonoscopy my doctor wont prescribe anything. 

Can anyone give me some advice please

Thankyou

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avatar Courtney_J

Courtney_J

Community manager
20/04/2020 at 15:53

Good advisor

avatar Courtney_J

Courtney_J

Community manager

Last activity on 13/10/2022 at 16:47

Joined in 2020


1,279 comments posted | 21 in the Living with ulcerative colitis group

11 of their responses were helpful to members


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@CEASER06‍  Hello Ceaser06, thank you for starting this discussion. I'm sorry you're in so much pain. I think you may not be alone in having your procedure postponed. Let me tag some members who may be able to share their experience or advice with you.

Hello members, I hope you don't mind I've tagged you here. How are you doing in this difficult period? Has the lockdown affected your treatment? Have you had any appointments or treatments postponed? Do you have any advice or recommendations for Ceaser06 to ease their pain or worries?

@Fleur23‍ @LizzieM‍ @Clairelouise2‍ @Hazel56‍ @Lindsey‍ @Sharonwray12‍ @Lisa53‍ @MaggieScott‍ @Kath30‍ @ChelseaB‍ @Dawnbea‍ @Sonnyb12‍ @Jub123‍ @Diannereap‍ @Deefarmer‍ @mv.neacsu‍ @Jackie47‍ @ALISONF‍ @Looby_Lou‍ 

Take care,

Courtney 

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Courtney_J, Community Manager, Carenity UK


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-04-20 15:53:43

avatar Clairelouise2

Clairelouise2

20/04/2020 at 16:02

avatar Clairelouise2

Clairelouise2

Last activity on 05/03/2021 at 20:49

Joined in 2020


1 comment posted | 1 in the Living with ulcerative colitis group


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Have you done a faecal calprotectin test to see how inflamed your bowel is ?  It can detect IBS or IBD .  My doctor put me straight on steroids as mine was high without having a camera test done first as well as octasa and pentasa suppositories 


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-04-20 16:02:01

avatar CEASER06

CEASER06

20/04/2020 at 17:14

avatar CEASER06

CEASER06

Last activity on 20/04/2023 at 20:04

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4 comments posted | 4 in the Living with ulcerative colitis group


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 Thanx clare louise for your reply.

Yes done 2 poo samples both came back with high inflammation levels  but my doctor said she wasnt worried about it .

Feels like I'm being fobbed off 😢

 

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A Hesketh


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-04-20 17:14:55

avatar Lindsey

Lindsey

20/04/2020 at 21:57

avatar Lindsey

Lindsey

Last activity on 26/07/2020 at 14:57

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1 comment posted | 1 in the Living with ulcerative colitis group


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Hi, when I was diagnosed with UC before I had my intestine removed the only thing that came anywhere near helping with the pain was a small amount of whisky, I know not ideal but it worked for me, hope you find something that works for you x


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-04-20 21:57:55

avatar Shazhollingsworth

Shazhollingsworth

20/04/2020 at 22:34

avatar Shazhollingsworth

Shazhollingsworth

Last activity on 14/06/2025 at 08:40

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1 comment posted | 1 in the Living with ulcerative colitis group


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Hi sweetheart, your story is so much like mine.I have also lost over 5 stone in weight,im in severe daily pain like yourself. Tramadol, patches,gambabatine you name it usless.Im on liquid or food supplements too started just over 12 months ago! Mine started upper gastic,diagnosed with gastritis,esophagitis,severe acid reflux with a sliding hietal hernia! So much more problems inbetween,constant throat,chest,stomache and vaginal infections.im a walking antibiotic! Never had as many in my life time as i have this past 12 month.Im.43 life as i knew and enjoyed has gone!.Kidney stones,diverticulitis  you honestly couldn't write it, Got a second camera to the bowel in January, this time report said mildy active ischemic colitis and diverticula.I was just beginning to dare to believe i was on the path of getting better and some longed foe treatment.Then the unfortunate corona virus took hold.I got discharged and booked past yet again to gp for usless pain management and referral back if needed.I cant function with it,im tired,feel sick all the time.I feel like im ROTTING inside.can you relate? Sharp,searing burning,stabbing pains travels around my large intestine and tummy,straight through to the back.Severe back inflammation and joint pains.I feel like an old.lady nothing like the old.me just over a year ago.The impact on my life has been immense,It is like a disability you cant see it from the outside. I break my heart i struggle cleaning, cooking, Im not able to do a quater of what i was capable of.I feel a burden on my husband, family and grown up kids.Im about to be a nanny in 4 weeks for the first time. This whole thing has consumed everything and as a.mum i cant tell you how much i feel i have let.my adult children down,my daughter with this being her first baby.It should be the happiest time of our lives! My family are good they know ME and this isnt me atal,they understand im very poorly inside.But it doesn't stop me feeling immense guilt.I have always been a person who never sits still, always on the go and always working and taking care of my family.Its been a life changer, my mental health has been hugely impacted .Who would know how debilitating  chronic insane  pain could effect you like this.Im no stranger to depression and anxiety i sufferd for 10 years horrendously after having my children.Until a full hysterectomy and hrt was what i had to do the get well again. A rare thing to cure hormonal depression at age 30.Never once in all that time though did i experience pain like this.I have given birth, broke my elbow and fractured my neck,surgery to rip.out all my reproductive system.I would take all that any day than this right now.That stuff come to an end and it feels like forever if ever i get out of this pain and feeling half dead inside. I know its very heavy  and dramtic to read this.My mind goes on overtime because the pain can go.under.my ribs on the right hand side, under my shoulder.I cant make head nor tail of it all.Im trying hard to think better days will come again.SICK to the back teeth of worrying because of how ill i feel and the pain,effects my hips and back even ribs.I have had cr scans xrays,yeah they have found a few issues but nothing sinister.Seems my whole mid section is severly inflammed.I have tried so so hard to fix this, vitamins, chiropractor, yoga,probiotics  diet changes.well when i could manage normal food.I miss my energetic happy self,i was bigger but by god i would take that any day than being this  way.Size 8 from an 18.People comment on how good i look,i dont feel good.I wish i knew how to help you love because i could do with some myself.Hope to god we get better sooner than later lots of love to you  x x x x  x


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-04-20 22:34:34

avatar CEASER06

CEASER06

21/04/2020 at 07:56

avatar CEASER06

CEASER06

Last activity on 20/04/2023 at 20:04

Joined in 2020


4 comments posted | 4 in the Living with ulcerative colitis group


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Thanx shazhollingsworth for your reply   this is exactly how I feel   your story is exactly the same as mine...I too used to be active and outgoing  i already have 3 grandchildren  but cant do the things with them that i used to do  because this pain totally consumes my life.

I dread getting up every day as i know i will be in constant pain.    No amount of painkiller helps and I've tried them all.

I even asked my doctor to open me up and take away the bowel  dramatic I know  but that's how much I want this pain to go away...she just said I was being silly   she clearly has no idea what this pain is like.

I too feel like my insides are septic and inflamed but until this coronavirus is over no hospital will even look at me.....I sometimes think will I be able to hold on that long.

Sorry for the rant  it's good to know that someone else knows exactly how I'm feeling x

 

 

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A Hesketh


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-04-21 07:56:50

avatar MissFibro

MissFibro

23/04/2020 at 10:21

Good advisor

avatar MissFibro

MissFibro

Last activity on 10/07/2020 at 15:55

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19 comments posted | 3 in the Living with ulcerative colitis group


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@CEASER06 @Shazhollingsworth Hello to you both, I completely understand what you've been through, UC is so debilitating both physically and mentally. I feel like the doctors just don't understand what we're going through and sometimes don't take us seriously. Stay strong, you will get through this! Hopefully this coronavirus will calm down soon so we can all get back to normal and you can get your diagnosis! Stay safe! emoticon heart


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-04-23 10:21:22

avatar lightsout

lightsout

18/05/2020 at 18:15

avatar lightsout

lightsout

Last activity on 20/10/2020 at 13:56

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10 comments posted | 9 in the Living with ulcerative colitis group


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@CEASER06 Hi Ceaser, did you ever get in for your colonscopy or has it still be postponed? I know what a relief it is to have a diagnosis so I can understand the frustration you must be going through if you're still waiting


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-05-18 18:15:13

avatar CEASER06

CEASER06

18/05/2020 at 19:18

avatar CEASER06

CEASER06

Last activity on 20/04/2023 at 20:04

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4 comments posted | 4 in the Living with ulcerative colitis group


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Hi thanx for your reply  still not had my colonoscopy 😢 because of the coronavirus I think I'll be waiting a while.

I've been ringing the doctors nearly everyday because the pain is unbearable   all they say is we cant treat you until you have your camera.

I've even considered going to a & e  but I dont want to mither the nhs or catch this virus myself

It's a horrible situation x

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A Hesketh


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-05-18 19:18:41

avatar keithjohn

keithjohn

Edited on 01/06/2020 at 20:04

avatar keithjohn

keithjohn

Last activity on 06/05/2022 at 00:24

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3 comments posted | 3 in the Living with ulcerative colitis group


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I went to my gp the start of may.i had MRI.ct and magic eye done within three weeks.it was a emergency as I had lost a lot of blood.as I had left it to long.i was diagnosed on Friday 29th of may.go to your gp and ask them for a CT scan if your having that many problems.then they will send you for magic eye.they are only performing the procedure for emergency only at the moment


My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/other-discussions/living-with-ulcerative-colitis/colitis-3219 2020-06-01 18:39:31

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