Patients Ulcerative colitis
Topic of the discussion
Posted on 20/04/2020 08:24
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
Beginning of the discussion - 20/04/2020My treatment has been delayed because of the Coronavirus - What can I do? https://www.carenity.co.uk/forum/ulcerative-colitis/living-with-ulcerative-colitis/colitis-3219
Posted on 20/04/2020 15:53
@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
Posted on 20/04/2020 16:02
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
Posted on 20/04/2020 17:14
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 😢
Posted on 20/04/2020 21:57
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
Posted on 20/04/2020 22:34
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
Posted on 21/04/2020 07:56
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
Posted on 23/04/2020 10:21
@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!
Posted on 18/05/2020 18:15
@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
Posted on 18/05/2020 19:18
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