How can I help my dad with his ulcerative colitis?

[minimini358]

Just need some advice as I feel like I'm really helpless at the minute and need to do something

My dad has had ulcerative colitis for 5 years but the last year has just been unbearable for him. He's tried so many treatments such as steroids/weekly injections and now infusions, but it is now the worst it's ever been. He is sick 10+ times a day and has bowel movements 10+ times a day and just doesn't want to eat because he knows it will make him sick. He doesn't leave the house, just sits in the chair getting thinner and thinner and says he doesn't see the point of living anymore because he is just existing. I have a little girl who is his first grandchild and it's just breaking my heart seeing him give up and suffer so much.

He has an appointment with his consultant next week face to face after 3 years of them being over the phone due to covid and I wanted to be able to go with him so that I can convey just how much he is suffering and how he's giving up on living (My dad is the old school type of man who doesn't want to trouble anyone and won't push for anything) but I'm unable to go in with him due to restrictions only allowing the patient in.

Does anyone know how I could possibly speak to the doctor or even the secretary to give them some information on just how much he's not coping? I feel utterly helpless and it's breaking my heart 🥺

Are you sure that’s the case? Even in you are his carer? This doesn’t need to funded caring.

My dad is in exactly the same position, the infusions are the last attempt before surgery - which he has already said he won't consider.

It's so awful.to see isn't it ? 😢

Can you push for a blood test to check anemia ? Dad has just had a transfusion which has been amazing, they missed the fact he was very anemic which was making everything worse. It was incredible it wasn't picked up, it's been over a year of him becoming so breathless he can barely walk.

Go in as a carer with your dad,insist on it. It's just not good enough to keep family away.

Good luck 🤞

@MrsPelligrinoPetrichor I'm so sorry to hear that your dad is in the same situation, it's just utterly Heartbreaking isn't it 🙁 apparently because I'm not registered as his carer I'm unable to go in with him which is terrible.

My dad has also said the same about surgery, that he would rather be dead but I honestly have read so many stories about how it has changed people's lives and I just wish that the consultant could put that forward to him and potentially talk him round.

Thanks so much for replying x

I would challenge that decision. Registered as a carer? How does that work then, do you have to whip out proof or something?

Don't know if this will help but my Dad had UC when I was very young. He was very sick with it. He was hospitalised for months. At some point he was given something for his nerves. I assume valium or maybe antidepressants. You didn't talk about it in those days. Anyway after that he seemed to recover. Didn't get any symptoms for the next 30years or so.

Apparently you register with the GP as a carer. Not sure what proof you'd get in an unpaid role so I would just sat yo anyone who asks you are his carer OP.

Do you know why he is so opposed to surgery? Is it a fear of the surgery itself or the stigma of "having a bag".

I have an ileostomy due to UC. It has improved my quality of life immesurably. The surgery now can normally be done keyhole with just a few small incisions and you can be home in a few days. No one (non medical) need know about it if you don't want to share - they are surprising discreet.

UC is a terrible disease - I'm not surprised he feels like giving up. I was terrified of surgery and was in an awful place mentally while I was waiting. Life after surgery isn't perfect but it is a hell of an improvement and I've never regretted the decision.

My mum had a course of chemo after a severe bout, followed by steroids and it radically improved symptoms for several years. When she had a reoccurrence of symptoms steroids then helped.

I'd bit heard of chemo as a treatment so was surprised but it certainly helped

Dad tried the chemo but it made him much worse sadly. Glad it worked for your mum,I've read when it works it works really well for some people.