Advice on cancellations. : I have a... - Crohn's and Colit...

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Advice on cancellations.

Skye22 profile image

I have a joint hospital team (NHS) who support me in managing my pain and symptoms. (colitis, Dysfunctional bowel).

Unfortunately since covid all my hospital appointments have been cancelled. New letter of yet another appointment to see my specialists arrived today dated May 2022!!!!!☹️

Was supposed to have seen specialsists August this year, have had 5prior appointments cancelled!!!

I feel I have been abandoned and not coping with endless flares and pain. I'm taking all my meds but endless pain is getting tough to cope with.

Another day in bed can't move due to endless bowel spasms. Just wanted to reach out and ask how others are coping through this pandemic.

9 Replies

Do you have access to an IBD nurse ? there's no reason why you can't be offered a telephone consultation either with the IBD nurse or your consultant.I've had several phone appts and was offered a face to face one at my clinic last month so sounds like you are being fobbed off !

Give the clinic a call.

Skye22 profile image
Skye22 in reply to bantam12

I have contacted consultants secretary numerous times informing me she will email consultant. Not one reply.I'm going to send letters to secretary and consultant, asking for phone consultations.

I'm always thinking others are in a worse state than me, but it's got so bad I have no choice but to ask for help.

Thank you so much for your response. Knowing that we are all a txt away gives me comfort. Stay well.

My symptoms have been fairly minimal during the lockdowns, luckily, but I have had two phone consultations with my consultant and been told to contact the Gastro dept via the IBD nurse if I have any problems. You clearly need help if you are in such pain. Call your nurse or consultant's secretary or if desperate, A&E!

Skye22 profile image
Skye22 in reply to Valbaty54

Thank you for your response I'm going to contact medical team and ask for phone consultations I'm really at the stage where I just can't cope.

Yes as Valbaty54 says, contact your consultant via their secretary. In the past I've had some success by emailing the secretary explaining the appointment situation, enclosing a letter for my consultant describing my symptoms, and asking that the secretary lets me know that the consultant has received it. Then start nagging.

My experience of IBD nurse helplines has been a bit disappointing; they do respond, but don't seem to be able to suggest something new that might have helped me. But certainly try yours if you have one. I've even written to both consultant and IBD helpline at the same time.

In the end I've found I need to research my symptoms online -- forums like this are helpful -- and know in advance what I want to try next.

So if you don't mind me asking, what medications are you on?

Skye22 profile image
Skye22 in reply to bresbo

I'm taking antispasmodics, tramadol, and solifenacin for bladder. Due to 13surgeries I have adhesions on bladder, Bowel, abdomen and pelvis. I have a severely compromised bowel and have to do daily trans-anal irrigation and manual extraction. My Bowel "locks" in endless spasms and can last for days.Recently my pain is off the scale, I just know that something has changed inside.

I'm going to contact medical team to see if I can even get a phone call with consultant. Thank you so much for your reply.

I'm so sorry. If something has changed, I'd go to A&E.

Skye22 profile image
Skye22 in reply to bresbo

It's something I really need to consider if these symptoms persist. Thank you so much for your reply. 😀

So sorry to hear how unwell you have been feeling. As others have said I don't see why you can't have a telephone consultation. My appointment at hospital was cancelled but my Consultant rang me on the appointment day and I'm sure if you emphasize how unwell you are feeling the doctor would at least ring you but you must not be fobbed off and really insist on being seen if you think it's necessary, none of us like to complain but if you feel that bad you need to be seen, wouldn't your GP ring your Consultant on your behalf or at least write to him telling him if your situation.Good luck.

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